The New Outlook

December 2003

Last Month's Meeting

We were very fortunate indeed to have as our featured speaker of the evening Dr. Alan Shapiro, a young gastroenterologist from Lutheran General Hospital.

Dr. Shapiro gave a very informational talk about the state-of-the-art in the diagnosis and treatments for inflammatory bowel diseases. Of particular note is that fact that probiotics—the administration of the beneficial bacteria that is normally found in our digestive tract—are improving the quality-of-life of patients during medical and surgical treatments for IBD.

Currently, medical science is experimenting with various “soups” of bacteria and their proportions for the different intestinal conditions. For instance, a recently published study noted that people who had j-pouch surgery—most of whom contract pouchitis—had none or reduced attacks when administered probiotics. The study said that probiotics dramatically improved a j-pouch patient’s quality-of-life.

The winners of our 50/50 were both first timers—Monika Schneider and Gordon Mehring. In addition, we were given a $50 Target gift certificate donated by Edgepark Medical Supply to raffle off, and our loyal welcoming person Helen Schneider won. We also wish to thank Joan Loyd, Jane Michnik and Vera Miller for contributing to our Hospitality Table.

Remember, there is no regular meeting in November and December, but we are having our Gala Holiday Party on December 10 (Read about the details in the following article). Be sure to come ... your always welcome. Happy Thanksgiving!

Note: We are still having problems with the post office. Last month’s newsletters were delivered up to 10 days late. We are trying our best to resolve this issue, but the post office is not very responsive.

President’s Message:

Hello Friends,

I am happy to report that our Visitor Training Session held at Hollister, Inc. on November 1 was a great success! We had a record attendance of over 35 people who were there to become certified, or re-certified visitors. A big thank you goes to our committee—Jeri Zaslavsky, Gerry Eiseman and Joan Loyd—and especially to Hollister, Inc, who provided us with a great location, wonderful food, and lots of support from their Customer Service Team.

Now that we have all these members ready to go out and provide support to new people with ostomies, we need your help. Medical care team members—doctors, ET’s, floor nurses, discharge planners and home health providers—need reminding that our trained visitors are a necessary part of their ostomy—or alternate procedure—patient’s surgical recovery. We have heard many stories of how just a thirty-minute visit from a trained visitor changed the complete outlook of many patients and helped their physical and emotional recovery tremendously.

Next time you talk or visit with any of your medical care team members, please remind them of the valuable service our organization provides ... free of charge. Let them know that we do pre-operative and post-operative visits, home visits, and phone visits, in case they are discharged from the hospital before they can contact us. If you would like, we have Chapter brochures available to explain our support services. Please use them.

Bring some with you to the doctor’s office next time you visit. Ask if you can leave them in the waiting room; or mail them to your health care providers; explain what a great benefit our organization has been to you. If we mailed them ourselves, doctors would probably just throw them out as just more junk mail. But if they come from you, their own patients, maybe they will look them over and give our organization a try.

On a lighter note, I would like to wish you all a very wonderful Thanksgiving Holiday. So, as you pass the turkey around the table, remember how much we all have to be thankful for!

Jane Michnik

Coming Events

November 19—Gladbagger’s Dinner. We are meeting for dinner at 7:00 p.m. at Lou Malnati’s Pizzeria at 85 S. Buffalo Grove Road in Buffalo Grove, 847-215-7100. We are the social subgroup of the Chapter. We meet to share stories of our trials, tribulations and triumphs of living with our ostomies—or any other subject that comes up.

December 10—The Gala Annual Holiday Party. Help us celebrate the holiday season with a pot luck dinner. Please call Sally Schinberg and let her know what delicious goodies you  can bring. This evening promises to be a good time for all.  Bring a gift to the party for the holiday gift exchange. Entertainment will be provided by our featured and talented Pianist Renard Narcaroti. Sing along and other events will be provided by Sally and her crew. (See the attached article.)

January 28—Panel discussion ... daily living with an ostomy. Plus, Sue Neu, RN/ET will be there presenting a short talk along with questions and answers. We will meet in room 1041W instead of the East Dining Room.

UOA Joins Amazon.com

Have you ever made a purchase through Amazon.com? Well, millions of people have, and now UOA has partnered with them. This means that UOA will receive a commission for ever purchase you make through Amazon.com .

We hope this will be a great fundraising tool for all of us. It will cost you nothing extra in order to participate.

To use simply go to the Chapter Internet site at uoachicago.org. Then go to Useful Links and click on UOA. Once there, click on the icon to Amazon.com . The computer will be able to track all your purchases. You can buy just about everything there, save the sales tax and receive the best prices around.

UOA has also partnered with other retailers. E.g., we also have a link to Alaska Smoke House. If a purchase is made through the link, UOA will receive 40% of the purchase. The retail price is not marked-up to accommodate us, this is just the standard salesperson’s commission that we will receive ... electronically.

So, if you purchase on-line, first go to our Chapter site, and link on from there. It costs you nothing to do this, but it may greatly benefit the Chapter and UOA.

Quality-of-Life Survey

Just to let you know, we had a great response to our request for members to participate in a quality-of-life survey. The survey was a sampling to fine tune a worldwide distribution of the most extensive quality-of-life survey on people with ostomies every endeavored.

Our sample had 50 questionnaires that we hoped our members would participate in completing. We had requests for all 50, plus we had over 40 returned by the deadline, close to a 90% return rate. Thank you so much for helping. The survey will enlighten the medical community of the true quality-of-life of people with ostomies with scientific accuracy.

Holiday Party Time

    Yes, it's that time of year again—time for our UOA Chapter to get together, have some fun and celebrate the Holiday Season! 

We'll have music, games, presents, and a sumptuous pot luck dinner.  It's being held on Wednesday, December 10, 2003, in the 10th floor cafeteria—our usual meeting place—at 7 p.m. Please bring some food, homemade or otherwise for us to share.  We need appetizers, main dishes, salads, side dishes, desserts ... even beverages.  Just call me at 847-364-0690, or email me at Sallyschinberg@aol.com, to let me know what you're bringing so we can ensure a balanced meal. And though we love them, all desserts really wouldn't be a good thing.

    If you want to play "Pick a Present" (our version of a grab bag), be sure you bring one to give—about a $10 value, preferably unisex.  We'll also play some games for prizes, enjoy Christmas and Hanukkah songs played on the piano by our own very talented Renard Narcaroti, and even have some sing-a-longs.

    New this year is our "Adopt a Table" project.  Lois Knaack always provides us with very beautiful centerpieces from her Hallmark Gift Shop.  It's a big job (lot's of packing and schlepping) and we think she deserves a break this year.  So, if you have a special holiday decoration or centerpiece at home that you would be willing to bring to adorn one of our tables, for just the evening, please let me know.

    So call me. Remember to bring food, a grab bag gift, a centerpiece, and, most of all, your Holiday Spirit!

Friends of Ostomates Worldwide

FOW is a completely volunteer group, organized by people with ostomies for the purpose
of sending supplies to other people with ostomies in countries where ostomy products are not readily available.

Last year, the FOW warehouse moved to 4304 Regency Drive, Glenview.  (Regency Drive is a block north of Central Road on the west side of Dearlove.)  Since we are completely volunteer, the warehouse has no telephone and does not have regular business hours.

Mario Pardo, a retired warehouse manager, volunteers there Monday, Wednesday and Friday from 9 a.m. until noon.  Joan Loyd tries to cover Thursdays, but cannot be there every week. Mike Cherry has organized a group of about 16 Hollister employees who come once a month on a Saturday morning. 

We always need help.  If you are interested—if you can come on a regular schedule or if you can give just a few hours once in a while—give Joan a ring at 847-724-7453.  She will send you a list of the jobs that need to be done.  You can see which ones appeal to you, and together we will arrange a time when you can come help!

Important...

All of you who renew membership in our Chapter during the “A” quarter are due. Our Chapter has 308 members.

National is still having billing problems. If you think you may have been removed from our membership list, please contact Frank Giorno—listed on page two.

Welcome New Members

Lorraine Berkowitz

Gayle Gilchrist

Helen Know

Monika Schneider

Lorraine Toton

Did You Know:  If you drop one or two sheets of toilet paper into the bowl before you empty your pouch, you will not splash!
A simple solution from Gerry Eiseman

Changed Address?

Please cut out his form and mail it to the address listed on page two. We don’t want to lose you if you move.

Name___________________________________

New Address_____________________________

________________________________________

New Phone_______________________________

Travel Resource

Contributed by Ellen Credille

Here’s a little known travel resource: The U.S. Department of Transportation’s toll free hotline for air travelers with disabilities. The hotline assists with both education and advocacy.

There are regulations that spell out what airlines must do to accommodate passengers with a chronic illness or other disability. Hotline officers are experts on these laws and can provide you with on-the-spot information. The officers can also advocate for you if you are actually at the airport and are not receiving cooperation from your air carrier.

Call to learn your rights. Contact the DOT’s toll free hotline from 7:00 a.m. to 11:00 p.m. EST at 1-800-778-4838.

Don’t Suffer in Silence

Forward by the Niagara Frontier Ostomy Association

Remember, a whole new world will open up to you by discussing your problems with others who have experienced these same doubts and reactions. We have all gone through this period of learning to live again and in many ways, even better than before.

Bring your fears and concerns out into the open. Take advantage of the friendships and knowledge of others by coming to a general meeting of your ostomy association. That is what we are here for.

A Urostomy Experience

By Becky Redmond, Coquitlam BC Chapter

It started when I noticed that the skin around my stoma was white and irritated. I tried several different things to clear it up. I changed to different brands of barriers, changed the barrier more often, drank more water, drank more cranberry juice and tried different powders. But nothing seemed to clear up my skin problem. I know that I should see a doctor, but was busy and put it off.

Then one day, when I went to empty my pouch, I noticed it was full of bright red blood and two small blood clots. This became worse over the next several days, and I ended up going to the emergency room.

A specialist came in and looked at my situation and quickly determined that because the skin around that stoma had such severe erosion, it caused a breakdown by the artery. The artery actually broke loose and was hemorrhaging. The doctor put in several stitches to close the artery.

I finally saw an ET nurse. She told me that she recommends that all her patients with urostomies wear a convex barrier. It keeps the urine from pooling around the stoma area to prevent skin breakdowns like I had.

So, I think it is better to see your doctor or ET nurse before erosion of the skin causes an artery to break. Don’t wait!

IBS in Children Under Five

Contributed By Dave Rudzin

A retrospective review of a database of all inflammatory bowel disease patients between 1977 and 2000 in a single institution found 82 patients who had onset of inflammatory bowel disease at 5 years of age or younger.

Initially, 44% had with ulcerative colitis, 33% Crohn’s disease, and 23% indeterminate colitis diagnosed. Only one of the patients below the age of 2 years with early-onset inflammatory bowel disease had ulcerative colitis diagnosed. Failure to thrive, perianal disease, and chronic fever were the distinguishing features for Crohn’s disease, whereas blood in the stool was the distinguishing feature for ulcerative colitis. In 15% of patients, the diagnosis was changed during the course of the illness.

Four of 36 children with ulcerative colitis and 4 of 19 children with indeterminate colitis eventually had Crohn’s disease diagnosed. The anatomic distribution of Crohn’s disease in this group of patients is different from that previously reported in older children and adolescents. Isolated small bowel disease was seen in only 11% of patients, isolated large bowel disease was seen in 30% of patients, and small and large bowel disease was seen in 59% of patients, resulting in a total of 89% of patients with large bowel involvement with Crohn’s.

This is the largest study of children aged 5 years and younger who have had early onset inflammatory bowel disease diagnosed. A high proportion of patients with Crohn’s disease had linear growth failure and large bowel disease in comparison with reports in older patients.—Richard R. Ricketts

Survive a Heart Attack ... Alone

By F. Daniel Rochman MD

Let's say it's 6:15 p.m. and you're driving home (alone of course), after an unusually hard day. You're really tired, upset and frustrated. Suddenly, you start experiencing severe pain in your chest that starts to radiate out into your arm and up into your jaw.

You are only about five miles from the hospital nearest your home; unfortunately, you don't know if you'll be able to make it that far. What can you do?

You've been trained in CPR but the guy that taught the course neglected to tell you how to perform it on yourself. Since many people are alone when they suffer a heart attack, this article seemed to be in order. Without help, the person whose heart stops beating properly and who begins to feel faint, has only about 10 seconds before losing consciousness. However, these victims can help themselves by coughing repeatedly and very vigorously.
A deep breath  should be taken before each cough, and the cough must be deep and prolonged, as when producing sputum from deep inside the chest, and a cough must be repeated about every two seconds without let up until help arrives, or until the heart is felt to be beating normally again.

Deep breaths get oxygen into the lungs and coughing movements squeeze the heart and keep the blood circulating. The squeezing pressure on the heart also helps it regain normal rhythm. In this way, heart attack victims can get to a hospital.

Tips for Urostomates

By Ben Hoover, Metro Maryland Ostomy Assn.

· Your equipment is not a handicap, it is a small nuisance. You can still do just about everything you ever did, although you might want to use an ostomy belt to hold your system is you are very active.

· Two or more pouch covers are one of the best comfort investments you can ever make. After all, that fluid is entering your pouch at 98.6°.

· People with a urostomy do not need to use stoma paste.

· The vinegar you use during the day in your night bag can ruin the plumbing in your home if it is not flushed or rinsed down with water.

· You are going to have some leaks. Do not worry about it. It happens to all of us. Just change your equipment and continue to march.

· Putting your night bag in a small plastic wash basin while in use will save on cleaning your rugs and floors.

· Some one-suit luggage will fit underneath an airline seat. A small plastic wash basin will fit in half of one side of the suitcase which will hold your supplies while traveling and is then available when you are using your night bag.

· Apply a little toilet paper to the drain on your pouch when you have drained the equipment to absorb the remainder of liquid residue out of the drain.

· Do not worry about your urostomy when traveling. You can go anywhere you want. You just have to take a few things you did not take previously.

· Take three times as many supplies as you think you will need when you travel ... just in case.

· If you have a leak in a pouch, put on a new pouch. If you have a leak in a barrier, put on a new barrier. Trying to use tape or fixing the leak will not work.

· There are many people out there that would love to trade their problems for what you and I will know only as an inconvenience.

Sexuality

By Pat Nishimot, RN, MPH Tulsa Newsletter

Sexuality is a subject that even most health care professionals are uncomfortable talking about. It is not surprising that couples dealing with trauma may have trouble communicating their needs and complaints in this area.

I think that sexual intercourse is only about 10% of sex. Kissing, hugging, talking, playing and doing special things together make up the majority of one’s sexual activity.

Other things that contribute to a healthy sexual climate include feeling comfortable with one’s self, the ability to respond, having effective relationships with both sexes, and a value system—knowing how one wants to act with others. It is important to remember that when dealing with a partner who is sick or recently post-operative, it can be hard to restart again in normal sexual activity.

Pain is a major turn-off. Sexual response is not always spontaneous, it is a learned behavior. Trying too hard can result in frustrations or failure to perform. This may lead to panic or desperation, and in an attempt to try even harder, an artificial and nervous response may result ... a sure way to fail again. Other things that thwart a good sexual response are fatigue and over-indulgence in alcohol or food.

Various medical reasons can result in an inability to perform sexually as well. Nerves damaged during surgery may prevent males from achieving an erection or an ejaculation. Retrograde ejaculation means that the sperm and/or semen is ejected backwards into the bladder. Orgasm is still possible with this condition, but it does feel a bit different.

After surgery, it can take up to one year to regenerate nerves. So one should not be too impatient in waiting for function to return. Give yourself plenty of time. Rarely, females may have a nerve cut that would decrease sensation in the genital area, but orgasm may still be possible if the woman is adequately stimulated.

Lubrication in a woman parallels an erection in a male as far as sexual response and readiness are concerned. A safe and practical lubricant that may be used is safflower oil. Stimulus and performance are also influenced by visual and mental involvement, as well as an acute awareness and knowledge of one’s self and one’s partner.

Some hints that may be helpful include: A sense of humor ... it is a great medicine. Talking things over with your partner. Accepting that a “home run” is not necessary every time.

To handle the possibility of a potential leak while in bed, a shower curtain is an inexpensive alternative to a plastic sheet—cover it with an old blanket for comfort. Then, do not worry about it. Even if a pouch should loosen, a change of linen, a change of appliance, an intimate shower, and an assurance that love is still there can mend a potentially negative emotional response. If you are worried about the consequences of eating inhibiting sexual activity, avoid gaseous foods and eat earlier. But do not let that be a deciding factor.

Opt for sexual activity ... no matter when, either spontaneously or planned. Laugh at the minor challenges that arise. Emptying the pouch before any sexual activity will lessen any problems as well as be more attractive. Some people use pouch covers, mini-pouches, fancy undies and pouches rolled up and taped in order to make them smaller. Some of the new opaque pouches even have a sporty look to them.

Take care of odor like any prudent person with good hygiene. Once in a while plan a special intimate appointment if your schedule is apparently too busy for this important time—do not put off intimacy. Work together to find time. The reward is worth the effort.

If the partner of a person with an ostomy is overwhelmed by the ostomy surgery, talking about feelings and sharing concerns with each other and at activities of your local UOA chapter, usually solve the problem. Do not spring the ostomy on a new sexual partner without preambles.

Do not worry about hurting the stoma. It’s tougher than you think. Go to a meeting of your local ostomy association. They are filled with people who have gone through the same issues as you are going through now. The main reason for this article is to motivate you to action ... go for it. Try out and do not have too high of expectations, at first. Do it over and over again, and before long you’ll be enjoying yourself sexually just like before your surgery.

Carcinoid Tumors

Macclesfield District General Hospital, Macclesfield, UK.

Carcinoid tumors are often difficult to diagnose because of obscure or non-specific symptoms. Two cases of ileal carcinoid are reported in whom the diagnosis was delayed as the symptoms and small-bowel series were thought to be consistent with Crohn’s disease.

This report emphasizes the difficulties of diagnosing carcinoid by conventional radiological
methods. Ileal carcinoid should be considered in the differential diagnosis of Crohn’s disease, particularly in elderly patients presenting with chronic recurrent symptoms.

The Best Ostomy Hints

The Green Bay News Review

· Don’t behave as if having an ostomy makes you less of a person or some freak of nature. There are lots of us and most of us are glad to the surgery kept us alive.

· Build a support system of people to answer questions when you have a problem. Consider your ET, or the ones’ that support our Chapter as well as our other members as people who will be there for you.

· Don’t play the dangerous game of making your appliance last as long as possible by over taping or putting off a change. There aren’t any prizes given for the longest wear time ... except accidentally.

· Don’t wait until you see the bottom of your supply box before ordering more. Always count on delays in shipping, holidays, etc. when calculating.

· Zip-lock sandwich bags are useful and odor proof for disposal of used ostomy pouches.

· Don’t get hung up on odors. There are some great sprays and some internal deodorants. Remember, everybody creates some odors in the bathroom. Don’t feel you are an exception.

· Hydration and electrolyte balance is of vital importance. Be sure to drink enough fluids to maintain good hydration.

· Read and learn all you can about ostomies. You never know when you may find an opportunity to educate someone about the life saving surgery that has extended so many lives. Learn to be matter of fact about this and never embarrassed. Few folks get out of this life without some medical problem.

· After surgery, almost everyone experiences some depression. You are certainly not alone. But it need not be a lasting condition. Seek help from other people. There is support out there for you.

· The bottom line is that we are alive and have been given a new life. Not long ago, this would not have been the case—successful ostomy surgery techniques were only perfected after WWII. Before this, people died. Ostomy surgery in the 1930’s was horrible with few survivors.

· Medicine and surgical techniques have given us an opportunity to experience this “second chance”. It is certainly an opportunity worth accepting and exploring. The most important part of you as a human being has not changed. You are still the same you. Never forget to actively celebrate life and all it has to offer.

Colostomy and Constipation

Vancouver Ostomy High Life

Way back before surgery, did you go to the bathroom after a hot cup of coffee, milk, cold juice, whiskey or beer? Well, whatever made you feel that need then, can make you feel the need now. Check it out.

See if your irrigation can be helped by some of the things you used to do. Of course, if you have had your colostomy for a number of years, your previous habits may not be the same now. Your body can, however, be trained as it was before, and you can adapt yourself to certain habits which can help you to be in control.

A glass of hot water or juice, or a cup of coffee before a morning irrigation may initiate gut reaction. Also, a glass or two of water, after the water return starts, is usually helpful. If you irrigate before going to bed, a glass of ice water or a cup of hot coffee should get you started. If you have not drank much water during the day, it would be wise to drink an extra glass or two to make sure your tissues will not absorb so much, or you may be left with little or no return.

But what if you don’t irrigate? Part of the difficulty in elimination of waste matter experienced by colostomates is due to lack of bulk in the diet. Consumption of white bread, pastry and highly refined foods does not provide the roughage and bulk necessary for proper evacuation of the colon. The deficiency can be overcome in part by the simple addition of bran to the diet.

Bran can be made into muffins adding raisins and molasses to taste. Diet ... there is no such thing as a colostomy diet. A colostomy is not an illness, so try to eat the same foods you have eaten and enjoyed in the past. If you are on a diet for a condition such as diabetes or high blood pressure, of course you should stay on that diet.

Foods can be acidic or alkaline, bland or spicy, laxative-like or constipating. Individuals react differently to food. Try to return to your former, normal diet. Those foods which disagreed with you in the past may still do so. Chew well and see the effect of each food on your colostomy output.

To maintain good health, the body requires carbohydrates, proteins, fat, minerals and vitamins. Water is not nutritious but is absolutely necessary. Having a balanced diet is a fitting way to maintain good nutrition and keep bowel activity normal. Every day your body needs meats or fish, dairy foods, vegetables and fruits, cereals and bread, and liquids. And always, talk to your physician or ET nurse if you have problems.

How Fiber Affects an Ileostomy

By Kay L. Peck, Registered Dietitian, Napa Valley, CA

Whether or not to include fiber, and to what extent, should be based on the any person’s tolerance of foods. The small intestine has a remarkable capacity to adapt.

Matter/digested food in the small intestine is quite watery, and after it moves into the large intestine, a good portion of the water is reabsorbed into the body. Most fiber is indigestible material from plants that acts like a sponge, soaking up water and increasing the bulk of the intestinal contents—making matter move through the system more quickly.

In a person with a colon, fiber is essential to preventing constipation and keeping a person “regular.” This is the main function of fiber. Another theory about fiber is that it promotes mucosal growth, thus keeping intestines healthier, promoting gut function. Usually, a person without a colon; i.e., with an ileostomy, doesn’t have a problem with constipation—in fact it is virtually impossible, and may have mostly watery stools or diarrhea.

Again, over time, a person may adapt, especially if the last section of the small bowel—the ileum—is still intact. Consuming too much fiber, or too much insoluble fiber may aggravate a person’s diarrhea or watery stools. If this is the case for you, limiting insoluble fiber, such as: bran, popcorn hulls, seeds, nuts, skin, seeds, stringy membrane parts of the fruits and vegetables may be helpful. However, another type of fiber—soluble—may be beneficial to someone with an ileostomy.

The function of soluble fiber is to make intestinal contents thicker and can actually prevent diarrhea. This fiber is found in oatmeal, barley, dried beans, peas, Metamucil and in the pulp of fruits and vegetables. Most foods have a combination of both types of fiber, but the above examples show the differences.

Just as a side note, I worked with a lady years ago who had short bowel syndrome. All of her colon and a significant part of the small bowel had been removed. She found that adding pectin—Certo, which is used to make jam and jelly—to her daily diet helped to minimize diarrhea. She added a little to some applesauce every day.

The New Ostomy

By Mark Shaffer, Metro Denver Ostomy Newsletter

At a recent chapter meeting, a subject came up that I found intriguing. One of the participants in the rap session stated that he found himself depressed and withdrawn even though it has been a year since his surgery.

He wondered how long he could expect that feeling to last and, I think, whether it would go on for the rest of his life. Some people with ostomies adjust almost immediately. These folks see an ostomy as a cure for an illness that threatened their lives or restricted their activities. Others take a few months, generally feeling better about the situation as soon as they master the fine art of pouch changing and maintenance.

For many, ostomy surgery begins a process that appears, and is, very close to the grieving process, and like any grieving process, the amount of time needed to feel emotionally whole again will vary. It took me almost two years following my surgery before I felt like I had regained my former personality and was ready to move on with my life.  So there is no magic amount of time needed to adjust to your new ostomy. Allow yourself the time you need and realize that the feelings of depression and isolation will eventually go away.

If the depression is severe, don’t be afraid to seek professional help. If your isolation is caused by a lack of confidence in your appliance, seek help from an ET nurse and come to a chapter meeting. There are people there who have been through all that you are going through and have succeeded in achieving an excellent quality-of-life. If your appliance is working fine but you still feel separated from others, come to a chapter meeting and fellowship with other people with ostomies. Come to a UOA meeting and meet others in the same situation. If you don’t already have one, call your local chapter and ask for an ostomy visitor who can talk to you about how they managed their post-operative emotions. But above all, give yourself time to adjust ... and be happy, you have been given a new life.

The Driver

Humor Contributed By Jane Michnik

This driver goes to pick up the Pope at the  airport, loads his luggage and gets  in to leave. He notices that the Pope is standing on the curb.

"Excuse me, Your Eminence," says the driver,  "Would you please take your seat so we can  leave?" "Well, to tell you the truth," says the  Pope, "They never let me drive at the Vatican,  and I'd really like to drive today."

"I don’t know if I should do that”, the driver thinks to himself. But it’s the Pope, and the driver reluctantly agrees. The driver quickly regrets his decision when the Supreme Pontiff floors it  accelerating the limo to 105 mph.

"Please slow down, Your Holiness!" pleads the worried driver, but the Pope speeds along until they hear sirens. The Pope pulls over and rolls down the window as the patrolman approaches, but the cop takes one look at him, goes back to his motorcycle, and gets on the radio. "I need to talk to the Chief," he says to the dispatcher.

The Chief gets on the radio and the cop tells him that he's stopped a limo going a 105 mph. "So bust him," said the Chief. "I don't think we want to do that--he's really important," said the cop.

"All the more reason."

"No, I mean really important," said the cop.

"Who’d you got there, the Mayor?"

"Bigger."

"The Governor?"

"Bigger."

"Well, who is it?"

"I think it's God!"  "What makes you think it's God?" "Well, He's got the Pope driving for Him!"

Visitor Training

On the 1^st of November, the Chapter sponsored our bi-annual Visitors Training Session. The Visiting Program fulfills one of the primary missions of UOA. This service offers person-to-person support to those people who have undergone ostomy or related surgery, so that they may achieve optimal physical and social rehabilitation. Visitor Training is the periodic training class held to instruct and qualify ostomy association members for certification as ostomy visitors.

Visiting Program Guidelines are provided to assist with the education to ensure the highest quality Visitor Program. We want to demonstrate the benefit of a visitor and to strengthen the credibility of this UOA service to the healthcare community.

The Visitor is an experienced, well-adjusted, trained person who has been determined to be qualified—both knowledgably and emotionally—to visit; who participates in recertification training every two years; and maintains membership in the United Ostomy Association through his/her local chapter. It is someone who has been there, done that, and now visits the new ostomate to offer his/her experience and training as a lay mentor.

Hollister, Inc. very graciously offered to host this event on the Hollister Libertyville Campus in the John Dickinson Schneider Conference Room. A continental breakfast was served, a hot lunch was provided at the mid-day break with coffee and cookies offered at the completion of the training. Plus, Mike Cherry videotaped the entire session with the professional quality AV equipment used by Hollister, Inc. They treated us royally. Hollister, Inc. made us feel like important guests at their facility.

The agenda included our capable and dedicated Visiting Coordinator, Jeri Zaslavsky, who discussed basic visiting principles along with administrative procedures and shared the leadership developing the days activities with our President, Jane Michnik.

Sue Neu, RN/ET from Northwestern Hospital, presented the anatomy and physiology of the ostomy. We always learn something new from this capable and experienced ET.

A Chapter member and a professional clinician, Sheri Rupert, provided us one of the best sessions we had ever seen on active listening skills.

Peggy Christ, RN/ET from Omaha, Nebraska, discussed “the visit” and adaptation after surgery. Peggy is co-author of the Visitor Training Guide published by National UOA, and also writes The Nutrition Column in the Ostomy Quarterly.

Special guest speakers also included UOA National Secretary, Ginnie Kasten and a hilarious tummy-grabbing skit on the wrong way to visit by Gary Ponti, a Chapter member who has been in the ostomy supply business helping people with ostomies for years.

Participants received certification in the National UOA Visitor Program. This was a first-class event that left all the participants inspired more than expected. We sincerely thank all of you including chapters from across the state who took part.

October 2003

Last Month's Meeting

Our Annual Product Fair and Bake Sale was a great success. We saw plenty of new products, talked to the vendors face-to-face and had some fun too.

The following vendors came in person to set up a booth and talk to us about our ostomy concerns:

Coloplast

ConvaTec

Hollister

Mark Drugs Medical Supply

Walgreen Home Medical Center

Some vendors unable to attend nevertheless sent free samples and information for us to enjoy:

American Ostomy Supply

Calmoseptine

Convenience Bag

Cook’s VPI Non-Adhesive Systems

EdgePark Surgical Supply Company

Fox Healthcare Supply Company

KEM (Osto-EZ-Vent)

Liberty

MC Home Healthcare (Na ‘Scent)

Osmore

Ostofresh

Stoma Care Laboratories

Undercover Cover Company

We wish to sincerely thank all the manufacturers and suppliers who voluntarily took time out of their lives to spend it with us or to send us valuable information about their products and services.

We also wish to thank all of you who participated in our Bake Sale—both those of you who brought some treat for us to sell and those of you who bought them. Sally came early to set up shop in the back of the room, worked the entire meeting managing the sale and completely sold out by the end of the evening. Thank you, Sally, for doing such a good job for us. This was one of our best Bake Sales ever, and the funds earned will help support the good work of our Chapter.

The lucky winner of the 50/50 was Tim Traznik with the consolation prize going to Josh from Hollister. Next month our program features Dr. Alan Shapiro, a gastroenterologist from Lutheran General and Sue Neu RN/ET. Be sure to be here!

Note: Last month’s newsletter was mishandled by the regional post office. The Palatine Distribution Center received them from our printer on September 11. They placed the ones being sent to Metro Chicago in a stack of bulk mail and forgot about them. The newsletters were finally delivered ... three weeks late! We have expressed our displeasure with the postal service and they have assured us this was a one-time mistake.

President’s Message:

Hello Friends,

Included in this newsletter is information on our upcoming Visitor’s Training Session to be held on Saturday, November 1 at Hollister, Inc. in Libertyville. Our Chapter only offers this training session every two years, and you must attend a training session at least once every two years to remain certified.

If you have had your ostomy (or alternate procedure) for at least one year, and feel you are well adjusted to living with it, please consider becoming a trained visitor. Being a trained visitor is the most fulfilling experience I have ever felt. If you had an ostomy visitor when you went through your surgery, you know how much it helped knowing that you were not the only person alive who had an ostomy, and that you could go on with your life. If you did not have a visitor, wouldn’t it have been wonderful to talk to or see someone who was just like you and that would be there to answer all your questions?

You can make the difference in someone else’s life, by becoming a trained visitor! The visitor’s we send to talk to new ostomates must be properly trained. We want to make sure that the correct information is given to these people, and that we present the right attitude at this very impressionable time in someone’s life. This is why we hold these training sessions every two years, so you can learn the correct way to offer support, and to remain skilled in these techniques.

Some of you who have already attended a training session and become certified, but have never been called to do a visit, may wonder why you should bother going through another training. Especially if you have not gone on a visit recently, you have probably forgotten the Do’s and Don’ts of making a proper visit. You never know when you may get that call to go on a visit, so you need this refresher training session. If you are a current visitor who is making many visits, you still need this session, since your visits may be getting stale and boring to you, and you need some new ideas to keep your approach fresh and upbeat. If you have not yet had your ostomy or alternate procedure for a year, but intend to become a visitor, you may still attend and become certified at the end of your waiting period.

Becoming a visitor is always a win-win situation. The person you visit is appreciative that you have taken the time to lend them your support and help, and you feel good about yourself because you were able to help someone else. Many close friendships have been formed during visits. It’s amazing how many things you may find you have in common ... other than your ostomies.

We will have some very special presenters for this training session. Among them are: Peggy Christ, a RN/ET from Omaha, Nebraska, who co-wrote this Training Session for National; Sue Neu, a RN/ET from Northwest Community Hospital; Ginny Kasten, a member of the National UOA Board of Directors, from the DuPage County Chapter, Sheri Rupert, a chaplain (and ostomate) from Northwest Community Hospital, and our own Gary Ponti, from Fairhaven Pharmacy.

So, please plan on attending this very important training session. It is only a few hours out of your time, but could mean the world to someone else when you make that next visit! See you at the next meeting on October 22 and at the Visitor’s Training Session on November 1 at Hollister, Inc.!

Jane Michnik

Coming Events

October 22—Come hear  gastroenterologist Dr Alan Shapiro, an attending physician at Lutheran General Hospital. Sue Neu will also be here to offer her insights and advise.

November 1—Our Biannual Visitor’s Training Workshop. We are holding this on a Saturday morning from 9:00 a.m. till 2:00 p.m. at the world headquarters of Hollister, Inc. in Libertyville on Milwaukee Ave. just north of Rt. 22. This is a session you don’t want to miss. We will have chapters from Illinois, Indiana and Wisconsin that will participate. If you want to be a Certified Ostomy Visitor, you can receive basic training and certification here. See the article in this newsletter for details.

November 8—CCFA’s annual conference at the Rosemont Convention Center. We’ll be there from 9:00 a.m. until 4:00 p.m. talking to people about our new life after ostomy surgery.

November 19—Gladbagger’s Dinner. We are planning to meet for dinner in Buffalo Grove. Please call Jane Michnik for details.

December 10—The Gala Annual Holiday Party. Help us celebrate the holiday season with a pot luck dinner. Please let Sally Schinberg know what delicious goodies you  can bring. This evening promises to be a good time for all.  Bring a gift to the party for the holiday gift exchange. Entertainment will be provided by our featured and talented Pianist Renard Narcaroti. Sing along and other events will be provided by Sally and her crew.

January 28—Panel discussion. We will meet in room 1041W instead of the East Dining Room.

Friends of Ostomates Worldwide

FOW is a completely volunteer group, organized by people with ostomies for the purpose of sending supplies to other people with ostomies in countries where ostomy products are not readily available.

Last year, the FOW warehouse moved to 4304 Regency Drive, Glenview.  (Regency Drive is a block north of Central Road on the west side
of Dearlove.)  Since we are completely volunteer, the warehouse has no telephone and does not have regular business hours.

Mario Pardo, a retired warehouse manager, volunteers there Monday, Wednesday and Friday from 9 a.m. until noon.  Marilyn Mau is there (from April through October) on the first and second Tuesday.  Joan Loyd tries to cover Thursdays, but cannot be there every week. Mike Cherry has organized a group of about 16 Hollister employees who come once a month on a Saturday morning.  Their next date is October 18, from 9:00 a.m. until 12:00 p.m..

We always need help.  If you are interested—if you can come on a regular schedule or if you can give just a few hours once in a while—give Joan a ring at 847-724-7453.  She will send you a list of the jobs that need to be done.  You can see which ones appeal to you, and together we will arrange a time when you can come help!

Last month, we re-packed the most supplies ever! Thank you to all our volunteers who worked so hard in preparing these most valuable donations. We had nine pallets ready for shipment in September—an average pallets contains a value of about $25,000 in retail ostomy equipment. These will be immediately delivered to people with ostomies living in third world countries in desperate need of supplies with little other means of obtaining them.

Welcome New Members

Patricia Edwards

Kathleen Fires

Sheryl Jones

Opportunity to Lead

We have openings on committees and one as Chapter Secretary on our board of directors. If you would like to serve our Chapter in this special way, please contact Jane Michnik.

Changed Address?

Please cut out his form and mail it to the address listed on page two. We don’t want to lose you if you move.

Name___________________________________

New Address_____________________________

________________________________________

New Phone_______________________________

Hints for Good Visiting

Published By The Evansville, IN Chapter of UOA

Be well groomed and dress attractively, you are being observed. Be sensitive to the patient’s needs; be cordial and friendly—speak softly.

Assure privacy if the patient is not in a single room. Ask if he/she would like to have the curtain drawn. Sit where the patient can see you easily without turning his/her head. When facing each other, communication may come more easily. Attend to the patient. Look at him/her, listen to what he/she is saying and “hear” also what he/she is not saying.

Respond simply and to the point. Encourage the patient to ask questions. Answer tactfully and honestly. If you do not know the answer to a question, say so and offer to find the answer. Briefly discuss the normal life you lead with your ostomy. Don’t dwell on your surgery and medical history. Remember that this visit belongs to the patient. Respond factually to any questions about sex after surgery, if these questions are asked.

If the patient does not want to talk about sex, do not press the issue. Accept emotional responses. If the person is angry or feels like crying, don’t stop him/her. Accepting feelings usually will make you both feel closer. Remember that non-verbal communication is meaningful. A touch, a smile, or just being there may show you care more than does the spoken word.

Questions on care should be directed to the ET nurse. When asked about ostomy management techniques, stress the fact that every ostomy is as individual as the person. Be helpful without pushing your own techniques. Say nothing that will detract from the doctor-patient or nurse-patient relationship. Do not practice medicine or give medical advice. The patient may wish to show you his stoma or ask your opinion of his surgery, so be prepared. Do not pass judgment on the surgery or criticize a physician, even by implication.

If the patients requests, show a sample of your ostomy system. Be considerate of the patient. If there are signs of fatigue, try to conclude the visit and suggest that you could return another day. Assume the responsibility for continuing contact—a follow-up telephone call, a note, another visit or an invitation to a chapter meeting.

When bringing the patient—and possibly also the family—to a chapter meeting, make arrangements to assure that the patient receives a warm reception. Above all, be yourself, use your own good judgment, use common sense ... you have been there.

Important: Your Help to Complete an Ostomy Health and Life Assessment Survey Request

The rapidly changing fabric of health care in North American and world societies makes a comprehensive knowledge of a person with an ostomy a necessity for health care providers and manufacturers of health care devices. In order to maintain a dynamic understanding of the ostomy population, a statistically and scientifically rigorous quality of life, health, and health assisting needs survey of North American ostomates is in its initial phase.

The sponsors of the survey, Hollister Inc., introduced the survey at the August meeting of our Chapter. The sponsors would now like to extend the ability to participate in the survey to all our members.

This investigation recognizes that the ostomy population is a multi-faceted, highly variable population with special needs and requirements. The investigation is seeking ostomates willing to complete an Ostomy Comprehensive Health and Life Assessment Questionnaire. The survey investigates various aspects of the life and health status of the ostomate, as well as the needs of the ostomate in regard to stoma and health care products. By taking part in this study, you will insure that your status as a person with an ostomy is represented, and you will be helping the global ostomy community by providing insight into the quality of life, health, and special needs of the ostomate population.

Please call Renard Narcaroti at 630-850-7125 to obtain a copy of the survey. We would like you to complete it and mail it back to Renard in an attached post-paid envelope. We want to guarantee that your personal information is keep private. Therefore, a trusted member of the Chapter is handling the distribution of the survey.

There is no compensation for participation, we want people to fill out the survey to not only help themselves but also to help people with ostomies ... everywhere. This study will terminate on November 1, 2003. Please participate. We need your input.

Common Questions Asked of ET’s

Ostomy Insights—American Ostomy Supply

Question: Do you think it is a good idea to rinse out my colostomy pouch when I empty it?

Answer: I usually teach my patients the proper procedure for rinsing the pouch when emptying it, but leave it up to them if they want to continue to rinse or not. By proper procedure, I mean rinsing the pouch up to the level of the bottom of the stoma.

I find sometimes people rinse the pouch too vigorously and cause the adhesive seal around the stoma to loosen from the inside of the pouch and introduce water at the seal. Some people feel more comfortable using an opaque colored pouch and not worry about rinsing it at all.

Again, I think it is a personal preference with what you are most comfortable using. Many people get along just fine without ever rinsing the pouch.

Question: I have a urostomy, and my urine always looks cloudy. Is this anything to be concerned about?

Answer: If you have in ileal conduit or a colon conduit, remember—our urine will have mucus from the piece of intestine used to create the stoma. Sometimes this causes the urine to look cloudy. This is perfectly normal.

As an aside, if your adhesive is breaking down faster than usual, or your urine has a strong odor not caused from any foods which create their own special odors, you may have an infection. If you have a suspect an infection, you need to see your regular doctor—who may refer you to a urologist. A urine culture sample will then be taken to verify if an infection in present.

Question: What can you suggest for a deodorant to use inside the pouch?

Answer: Usually, ileostomy or urostomy output does not have much odor. For a colostomy, one might want to use a deodorant. There are many commercial deodorants available for use in the pouch or taken internally. They are available in liquid or tablet form. Years ago, aspirin was recommended to use as a deodorant in the pouch. Aspirin is not recommended any longer. It was found that it causes pinpoint bleeding of the stoma if it washes up onto it. Plus, it has not been shown to be effective in odor control. Probably, using a good room spray before opening the pouch could be partially effective. Remember, everyone with or without an ostomy has odor in their stools.

What’s Normal for Your Stoma

Coos Bay Ostomy Association

What is normal for my stoma? This is a frequently asked question. Here are some answers from your stoma to you:

My color should be a healthy red I am the same color as the inside of your intestine. If my color darkens, the blood supply might be pinched off. First make sure your pouch is not too tight. It should fit 1/ 16 to 1/8 inch from the base of the stoma—although the new extended wear barriers like the Hollister Flextend and the ConvaTec Durahesive may touch the stoma. If I should turn black—very unlikely but it does happen occasionally—seek treatment at once. Go to your local hospital emergency room if you cannot readily locate your doctor. Be sure to remove the pouch for them to examine the stoma and peristomal skin. Always take at least one extra change of system along.

I might bleed a little when cleaned. This is to be expected. Do not be alarmed. And please, just be gentle when you handle me. If I am an ileostomy, I will run intermittently just about all the time and stool will be liquid to semi-solid.

If you should notice that I am not functioning after several hours and if you develop pain, I might be clogged. Try sipping warm tea or taking a little mineral oil and then try walking or getting into a knee-chest position on the floor. Sometimes a hot shower with your barrier removed will relax you enough to loosen the obstruction. If I do not begin to function after about an hour of this, call your physician. If you cannot locate him/her, go to the emergency room. In the meantime, I might have begun to swell. Remove your barrier and put on one with a bigger opening.

If I am a colostomy located in the descending or sigmoid colon, I should function according to what your bowel habits were before surgery. I can be controlled in some cases with diet and/or irrigation. This is a personal choice. There is no right or wrong to it, as long as I am working well, my stool will be fairly solid.

If I am a urinary diversion, I should work constantly. My urine should be yellow, adequate in amount and will contain some mucous. If my mucous is very much more excessive than usual, I might have an infection. I will probably also have an odor and possibly a fever. Consult your physician if that is the case. If at any time, you doubt that your stoma is functioning normally, please seek help ... call your ET. The cause needs to be evaluated. If your problem is a serious one, it needs correction. If it is not, you will be relieved to know your stoma is alive and well.

Note: If you do not have an ET, find one before you ever need help. Have his/her phone number in your wallet at all times—just in case. In addition, you should see your ET every year or two or three to have your stoma examined.

Measuring Your Stoma

By Alice Bowman and Bob Baumel

We recently visited a patient with a two-year old colostomy, suffering from severe skin irritation caused by using an appliance with a pre-cut stoma opening the same size as originally measured in the hospital after surgery. Immediately after surgery, the stoma is quite swollen; it then shrinks for about the next six months — sometimes a year or longer.

During the initial period, while the stoma is shrinking, it is best to use a cut to-fit appliance and measure your stoma every time you change the barrier. Once your stoma has stabilized, you may wish to switch to a pre-cut appliance. However, you should continue to measure your stoma occasionally to see if you should switch to a different size and type of ostomy system.

If you fail to adjust your barrier opening as your stoma shrinks, you will eventually be using a barrier with an opening much bigger than your stoma. This leaves a large area of unprotected skin around your stoma, making you a prime candidate for skin irritation.

How big should the appliance opening be? For most types of barriers/face-plates/flanges, the opening should provide clearance of a millimeter or two all around the stoma (about 1/16^th of an inch). On one hand, one should minimize the area of unprotected skin around the stoma; on the other hand, some clearance is usually necessary because many barriers contain hard materials—including plastic films—that can damage the stoma if they come in contact with it. Paste or a one of the new barrier strips may be used to fill in the gap between the flange and stoma.

The new extended wear barriers; such as, ConvaTec’s Durahesive or Hollister’s Flextend barriers, are engineered to be sized so that they actually touch the edge of the stoma. Your ostomy supply dealer and your ET nurse can keep you informed of the new products on the market and alternative options for using them. 

Britain NHS Death Rates High

By Jo Revill, The Observer

Waiting lists and shortage of doctors blamed for grim mortality figures. Patients who have major surgery in Britain are four times more likely to die than those in America, according to a major new study.

The comparison of care, which reveals a sevenfold difference in mortality rates in one set of patients, concludes that hospital waiting lists, a shortage of specialists and competition for intensive care beds are to blame.

Fresh evidence of a stark contrast between the fate of patients on either side of the Atlantic will re-open the debate over whether NHS reforms are having any impact on survival rates.

Mounting evidence suggests that patients who are most at risk of complications after an operation are not being seen by specialists, and are not reaching intensive care units in time to save them.

This week health Ministers will present the latest figures showing another yearly rise in the number of intensive care beds for those who are critically ill. But Britain lags far behind America in its critical care facilities. An authoritative study to be published later this year will demonstrate that the chances of survival after undergoing a major operation are far greater in an American hospital.

The authors conclude that NHS waiting lists, the lack of specialist-led care and the fact that many patients do not go routinely to intensive care contribute largely to the difference.

The results, which surprised even the researchers, showed that just 2.5% of the American patients died in hospital after major surgery, compared with a whopping 10% of British patients. They found that there was a sevenfold difference in mortality rates when a subgroup of patients—the most seriously ill—were compared.

It is believed that the queue for treatment in the NHS would inevitably mean that British patients were more at risk. Diseases are more advanced in the UK, simply because the waiting lists are longer. It does seem to show a difference in the systems of care, rather than a reflection of some other factor. The provision of intensive-care beds is obviously one of the differences. In America, everyone would go into a critical care bed—they go into a highly monitored environment. That doesn't happen routinely in the UK. Each year, more than three million operations are carried out on the NHS. Around 350,000 of these are emergencies, which carry a higher risk of complications, but there is no routine triage system in Britain for picking out patients before surgery, to determine who is most at risk.

Previous reports looking at deaths that occur within 28 days of surgery have shown that 36 per cent occurred in patients who went directly into ICU after surgery. But a higher mortality rate—42 per cent—is seen among patients who had first been sent to a ward, got into difficulties and then had to be transferred to intensive care. There are substantial number of patients each year who die, who might otherwise have survived had they got the appropriate kind of care after surgery.

There's a crucial six- to eight-hour period when some people need their cardiac output [the amount of blood the heart pumps out each minute] boosted. Even 80-year-olds undergoing heart surgery are far more likely to survive when they receive that care.

Good Mental Health

UOA is offering free telephone psycho-social consulting for people with ostomies and
their families through the services of Dr. Ron Burton, Ph.D., Social Policy.

Dr. Burton, a urostomate from Philadelphia, will provide pro bono advice for those in a crisis situation and can refer callers to local resources or continuing help. For assistance, call the UOA office at 1-800-826-0826 to be referred to Dr. Burton.

Do You Have One Yet?

We mean an ostomy identification card. Are you aware that you can be the rightful owner of an Ostomy Traveler ID Card if you are a UOA member?

This little card—just one benefit of UOA membership—explains the need for discreet personal and luggage examination and the rationale for carrying necessary supplies. It is intended to alert the necessary personnel at airports or other travel venues and could be vitally important to you if you were in an accident or temporarily unable to communicate.

Ostomy Patients

Fieldwork Chicago is a market research company located in Skokie just west of the Old Orchard Shopping Mall. We are putting together some market research focus groups in October for people who have a colostomy or an ileostomy; i.e., anyone who has a permanent fecal ostomy, or who recently had one reversed or is planning on a reversal.

We would like these people to participate in a focus group to discuss the impact an ostomy has had on their lives, as well as the products and services they use to manage their ostomy. No one will try to sell the participants anything. We are only interested in your opinions. You will receive a cash honorarium for your involvement.

To participate in the study, please call Nancy at 847-583-2911, Monday through Thursday, 9:00 a.m. until 9:00 p.m., or Friday 9:00 a.m. until 4:30 p.m., or Sunday 12:00 p.m. until 4:00 p.m.

Visitor’s Training Session

Date: Saturday, November 1, 2003

Time: 9:00 am (Registration) till 2:00 pm

Place: Hollister Inc.

2000 Hollister Drive (Located on Milwaukee Avenue just about a mile north

Libertyville, IL 60048 of Route 22. They are just north of the Vernon Hills Shopping Mall)

Please come join us for an exciting and informative day!

Peggy Christ, RNET from Omaha, Nebraska will lead the session. Peggy is co-author of the Visitor Training Guide published by our National UOA, and also writes the Nutrition column in the Ostomy Quarterly. She is enthusiastic, energetic and very knowledgeable. This will be an outstanding training session that you won’t want to miss!

Topics to be covered are: Anatomy and Physiology, Adaptation after Surgery, “The Visit”, Administrative Procedures, and Questions and Answers. Participants will receive certification in the National UOA Visitor Program, but check with your chapter on its own visitor policies.

We are is grateful to Hollister Inc., who is hosting this session and will be providing a continental breakfast during registration, lunch and refreshments.

====================================================================

Registration Form

Please Return Form by October 20, 2003 to:

Jane Michnik

9254 N. Washington

Niles, IL 60714

Name:

Address:

Phone: e-mail:

Chapter: Type of Ostomy:

Are you currently a Certified Visitor? Medical Professional?

September 2003

Last Month's Meeting

So much to do with so little time to do it. We filled up our meeting with just a part of all the information and activities we had planned.

Many of us that went to the national convention will be writing articles about all the new and exciting products and services we saw offered. In addition, there is new medical information that is sure to be of interest to our members. You will see this information communicated to you in future issues of The New Outlook.

We were fortunate to have a repeat speaker at our meeting. Bari Stiehr, RN/ET who told us how to recognize and treat skin issues related to hot weather. She said that candida—a fungal infection—will grow on most people with an ostomy at some time or another under the barrier or the pouch. Treating the area with a good micro-granulated anti-fungal powder is usually the best solution. A cream is usually too greasy for use under the barrier, although it may be fine for other areas of the body.

Just in case you use any type of barrier wipe, it is best to put the powder on your skin first, and then dab the wipe on your skin. This action will help seal the powder directly onto your skin thus allowing you to obtain the best results.

Hollister Inc. had a special guest presenter. Thom Nichols, senior principal clinical research statistician, along with a marketing team have been working on a worldwide quality-of-life study. This study will be largest and most complete of any research ever done on how well we live.

They needed some help from us. We partook in a test of the survey at our meeting with members answering a scientifically prepared questionnaire. The results from the final survey will be published in medical journals. We are always happy to be able to contribute to works that further the cause of improving the quality-of-life of people with ostomies.

We wish to thank all those who brought goods for our Hospitality Table: Joan Loyd, Jane Michnik, Sally Schinberg and Helen Schneider. Remember: Next month is our annual Bake Sale and Product Fair. Bring treats for us to sell and be prepared to buy some goods at our sale. Our Hospitality Table will only have coffee and tea for our September Meeting. We hope to have a well attended Product Fair. See you there.

President’s Message:

Hello Friends,

While attending the UOA Annual Conference in Las Vegas, I attended a session on Chapter Revitalization. It was interesting to hear how other chapters operate. Much of it is based on the size of the chapter and their geographic area. If they are more rural and a smaller chapter, they usually operate much differently than our Chapter which is urban and has many members. I learned that these smaller chapters seem to get a great deal accomplished with fewer members than ours because everyone participates in chapter business.

I believe that many of our members seem to think that since we have over 300 members ... someone else will do the job, and so, they are not needed. That is not the case. Even though our membership number is large, most of our members do not attend meetings; most of them do not serve on a committee; and most of them are not active in the Chapter. Bigger isn’t always better!

We need more participation in our Chapter from every member, even if you are not able to attend meetings. We have jobs available that need to be done that may be accomplished in only a few minutes a month ... even from home. We need people who are willing to help make phone calls a few times a month. We need people to make visits to new ostomates, which may only take an hour once in a while. And we need people to help serve on committees at our meetings, such as the Library, Hospitality, Appliance Board, and others. If we can get a few people to share a job, then it does not become a burden for anyone.

I know that you like being a member of this Chapter. You enjoy reading the newsletter, or the web site, or attending our meetings once a month. But without people helping to run the group and doing all the “behind the scenes” jobs, this Chapter would cease to exist, even with over 300 members!

In order for that not to happen, we need your help, and your input ... now. So, how can you help? Start by letting us know what you think. What do you like about our Chapter? What don’t you like about our Chapter? What changes would you like to see? Do you want meetings held during the daytime? How about weekends? Do you want more social activities? Do you want more speakers at meetings, or fewer speakers and more Rap Sessions?

Start to help our Chapter by just making suggestions or offering to help serve on a committee. Those of us that are currently on the Board will soon “burn out” if we do not get assistance. But this won’t happen if each of you help, just a little, to make our jobs easier. We want to make this large chapter operate more like a small chapter by getting everyone involved. Isn’t life better when you get involved?

Now that I have you ready to say, “Yes, I’ll help. What do you want me to do?” Call me at 847-966-8639, or e-mail me at n9yha@hotmail.com. Please do it right now while you are thinking of it—except if your reading this in the middle of the night. I will find just the right job for you. If you want to offer suggestions, please write me a note to the address on page two. I hope that I will hear from many of you soon!

Jane Michnik

Mark Drug Home Health

Mark Drug Home Health is happy to announce that they have added Coloplast products to their already extensive selection of ostomy supplies.

Because of the preferred pricing they have been able to attain, Mark Drug Home Health can now accept Medicare assignment on Coloplast ostomy products. This way you may try these unique products by not having to purchase them upfront and then wait for Medicare reimbursement.

Plus, Mark Drug Home Health is holding a Free Ostomy Patient Clinic Day on Wednesday, October 15, 2003 at their 1457 W. Schaumburg Road location . You will have an opportunity to consult with a medical professional about your current ostomy usage. To register just call them at 847-895-0011.

With their existing generous inventory of brands such as ConvaTec and Hollister, your options for comfortable and effective ostomy products has never been better. For questions or for Coloplast samples, just call them.

Coming Events

September 24—The Chapter will be holding our Annual Bake Sale in conjunction with our Product Fair. Come meet the venders of companies that make and provide ostomy equipment. Feel free to speak to vendors and take samples.

Great raffle prizes will be provided by Vendors. Sally Schinberg is looking for people that like to bake—or bakery—and would be willing to bring items that we can sell at the Bake Sale. Individual portioned treats as well as entire cakes and pies would be greatly appreciated. See the article in this month’s newsletter.

October 22—Come hear  Gastroenterologist Dr Alan Shapiro, Attending Physician Lutheran General Hospital.

November 1—We are working to put together our Biannual Visitor’s Training Workshop. The details are still being worked out. But, it is planned that our friends at Hollister, Inc. will assist with their professional resources to host this important training at their facility in Libertyville. We will have chapters from Illinois, Indiana and Wisconsin participating. If you want to be a certified ostomy visitor, you can become certified here. Specific details will follow in next month’s newsletter.

December 10—The Gala Annual Holiday Party. Help us celebrate the holiday season with a pot luck dinner. Please let Sally Schinberg know what delicious goodies you  can bring. This evening promises to be a good time for all.  Bring a gift to the party. A holiday gift exchange will also take place this evening. Entertainment will be provided by our featured and talented Pianist Renard Narcaroti. Sing along and other events will be provided by Sally Schinberg and her crew

Friends of Ostomates Worldwide

FOW is a completely volunteer group, organized by people with ostomies for the purpose
of sending supplies to other people with ostomies in countries where ostomy products are not readily available.

Last year, the FOW warehouse moved to 4304 Regency Drive, Glenview.  (Regency Drive is a block north of Central Road on the west side of Dearlove.)  Since we are completely volunteer, the warehouse has no telephone and does not have regular business hours.

Mario Pardo, a retired warehouse manager, volunteers there Monday, Wednesday and Friday from 9 a.m. until noon.  Marilyn Mau is there (from April through October) on the first and second Tuesday.  Joan Loyd tries to cover Thursdays, but cannot be there every week. Mike Cherry has organized a group of about 16 Hollister employees who come once a month on a Saturday morning.  Their next date is September 20, from 8:30 a.m. until 11:30 a.m.

We always need help.  If you are interested—if you can come on a regular schedule or if you can give just a few hours once in a while—give Joan a ring at 847-724-7453.  She will send you a list of the jobs that need to be done.  You can see which ones appeal to you, and together we will arrange a time when you can come help!

In fiscal year 2002-03 (August 02 through July 03), FOW shipped 7,072 pounds of ostomy supplies from the Glenview warehouse.  Four pallets (1,874 pounds) of ostomy supplies went to Uzbekistan in August, 2003.

Joan Loyd has been presented with the highest honor from FOW Worldwide for 2003. To her surprise, at the national convention in Las Vegas in August it was announced that Joan has won the FOW Service Award. This is quite an accomplishment for Joan as well as the entire team of volunteers that work with her. This impressive recognition was presented to Joan, but as she said in her impromptu acceptance speech, this success was only made possible by all those here in Chicago that have worked so hard this past year to make the warehouse operate.

Important...

All of you who renew membership in our Chapter during the “D” quarter are due. Our Chapter has 301 members.

National is still having billing problems. If you think you may have been removed from our membership list, please contact Frank Giorno—listed on page two. We are very concerned about losing some of our valuable members because of this administrative issue.

Welcome New Members

Reuben A. Erickson

Larry Litwack

Opportunity to Lead

We have openings on committees and one as Chapter Secretary on our board of directors. If you would like to serve our Chapter in this special way, please contact Jane Michnik.

Changed Address?

Please cut out his form and mail it to the address listed on page two. We don’t want to lose you if you move.

Name_____________________________________________________________________________

New Address_______________________________________________________________________

__________________________________________________________________________________

New Phone_________________________________________________________________________

Membership Renewals

Over the past month or two, it has come to our attention that the membership renewals—sent out by our national office—have had the wrong return address on them.

This means that if you were to renew recently, we may not have received your request. At best, you would have received your check back from the Post Office and called Frank Giorno—our Chapter’s dedicated membership chairperson—to find out why. At worst, your renewal membership was lost and you were inadvertently taken off our membership list.

If you find that you are not receiving The New Outlook or Ostomy Quarterly in the next few months or that your check was not cashed, give Frank a call. We do not want to lose even one person because of a clerical error.

We value each of our Chapter’s members, and want to make it easy for you to renew this important membership. Our membership accounting has been an increasingly difficult challenge for us as the national office works through their political issues.

Bone Facts for Women

Contributed By Jane Michnik

What you don't know about your bones can hurt you. Bone-thinning osteoporosis is responsible for fractures in one in two women past age 50, yet in many cases, it can be prevented, scientists say. "Many people are surprisingly misinformed or uninformed about how to build healthy bones."

Here are some bone facts you should know. Your calcium needs vary with age: 500 milligrams for ages 1-3; 800 mg for 4-8; 1,300 mg for 9-18; 1,000-1,200 mg for pregnant and lactating women; 1,000 mg for adult women; 1,200 mg for post-menopausal women taking hormones and 1,500 mg for those not on hormone treatment.

Your body cannot absorb more than 500 milligrams at a time, so wait four to six hours between doses or dairy servings. Cottage cheese is a poor source of calcium. Good sources include non-fat yogurt and such hard cheeses as Parmigiano and Swiss. Low-fat dairy products are higher in calcium than whole-milk products.

Foods and beverages that interfere with calcium absorption include heavily salted foods such as bacon, salami, smoked salmon, prepared soups and salty snacks, colas, drinks with caffeine and an excess of alcohol. About 15 minutes of daily sunlight without sunscreen will produce all the Vitamin D you need. Osteoporosis begins in the teen years.

Beginning at age 9, children (particularly girls) perhaps should include calcium in their diet. Cardiovascular exercise such as biking or swimming is better for the heart than for the bones. Engage in weight-bearing exercises such as running, jumping and lifting. When older women lose height, suffer back pain or develop a protruding abdomen or "dowager's hump" on their back, chances are "that's a sign of a vertebral fracture of the spine." Early menopause, amenorrhea (loss of your period, sometimes as a result of too much exercise), estrogen inhibiting birth-control drugs such as Depo-Provera, late puberty, irregular periods or other menstrual disorders put women at higher risk of developing osteoporosis.

Medications that can reduce bone mass include glucocorticoids used to control arthritis and asthma, some anti-seizure drugs, certain sleeping pills, some hormones used to treat endometriosis and certain cancer drugs.

Medicare Cuts

Washington—unless Congress intervenes, doctors will see a 4.2 percent cut in their Medicare payments beginning next year. In a proposed rule, the cut is needed under the existing Medicare law.

Many doctors and some members of Congress disagree. The cuts could affect 40 million elderly and disabled Americans. Medicare officials say Congress could avert the cut as part of legislation to add drug benefits to Medicare. But there is no guarantee that Congress will finish work on the legislation before January 1, when the cut is to take effect.

Administration officials said the cut in Medicare payments to doctors may not harm beneficiaries or hurt their ability to obtain care. But doctors said the new cut, after a 5.4 percent cut last year, would give them a fresh incentive to limit the number of elderly patients.

What Goes Around...

His name was Fleming, and he was a poor Scottish farmer. One day, while trying to make a living for his family, he heard a cry for help coming from a nearby bog. He dropped his tools and ran to the bog. There, mired to his waist in black muck, was a terrified boy, screaming and struggling to free himself. Farmer Fleming saved the lad from what could have been a slow and terrifying death.

The next day, a fancy carriage pulled up to the Scotsman's sparse surroundings. An elegantly dressed nobleman stepped out and introduced himself as the father of the boy Farmer Fleming had saved. "I want to repay you," said the nobleman. "You saved my son's life.

"No, I can't accept payment for what I did," the Scottish farmer replied, waving off the offer. At that moment, the farmer's own son came to the door of the family hovel. "Is that your son?" the nobleman asked. “Yes," the farmer replied proudly. "I'll make you a deal. Let me provide him with the level of education my own son will enjoy. If the lad is anything like his father, he'll no doubt grow to be a man we both will be proud of." And that he did.

Farmer Fleming's son attended the very best schools and in time, he graduated from St. Mary's Hospital Medical School in London, and went on to become known throughout the world as the noted Sir Alexander Fleming, the discoverer of Penicillin.

Years afterward, the same nobleman's son who was saved from the bog was stricken with pneumonia. What saved his life this time? Penicillin. The name of the nobleman? Lord Randolph Churchill. His son's name? Sir Winston Churchill.

Someone once said: What goes around comes around. Work like you don't need the money. Love like you've never been hurt. Dance like nobody's watching. Sing like nobody's listening. Live like it's Heaven on Earth.

How Long Will You Live

By L. Wruble, M.D

Well, prepare, for good news! There have been only a few long-term studies of the postoperative life of people with an ostomy. The findings that have been made known were mainly done since the 1990’s. What do you think is the ultimate outcome? What may a person with an ostomy expect in terms of health and life expectancy?

The studies that have been done indicate that the health of a person with an ostomy is exactly the same as that of anyone else. And, of more importance, there is no difference in their life expectancy from the general population. Every part of the intestinal tract works in harmony, so it might be expected that the removal of one part, such as the colon, might affect the rest. But the studies reveal no indication of this. Diseases of the intestinal tract such as gallstones and peptic ulcers are not found to be in higher incidence after ostomy surgery. There is, however, an increase in the formation of kidney stones in the ileostomate, possibly because of the increase in the absorption of certain chemicals that stimulate the formation of stones.

There is an enormous amount of data, which indicates that women with ostomies have no more problems with their pregnancies than women without ostomies. The gastroenterologist's major thrust in therapy has always been through the patient's diet. In recent years, however, it has been found that diet really has small value in most gastrointestinal conditions.

According to dietary studies, there is no one food that affects a person with an ostomy out of proportion to other foods. To sum up, I would say that the diet of the person with an ostomy should be a normal diet and that the outlook for his of her health is on a par with that of the population as a whole.

Temporary Ostomies

Nancy Brede, RN/ ET

Temporary ostomies are surgically created with the intent of reconnecting in the future. The anatomy of the gastrointestinal system or urinary system is left intact.

Permanent ostomies are created with the intent that the ostomy surgery will not be reversed: usually the anatomy in the gastrointestinal or urinary system has been removed. Permanent ostomy surgery is usually performed when disease or injury prevents maintaining the anatomical structures needed for reversal.

A large number of temporary ostomies involving the colon are done on an emergency basis. The colon becomes obstructed or blocked, and stool cannot pass through. Because of the emergency nature of the surgery, the bowel cannot be cleaned and prepped ahead of time. Reversals—re-anastomosis or hooking the normal anatomy back up—then can be done later, when infection is not as likely and proper healing can take place.

The most common situations and diseases requiring a temporary ostomy are:

Cancer of the colon with obstruction—or other abdominal cancer affecting the colon.

Hirschsprung’s Disease, a disorder or malfunction in infants that prevents passage of stool. Due to lack of nerve cells in certain areas of the large intestine, stool is not moved through, and an ostomy is necessary.

Diverticulitis, small out-pouching in the wail of the intestine, called diverticula, become infected. The diverticula may rupture or cause obstruction.

Crohn's Disease may necessitate a temporary ostomy to allow the diseased bowel to heal.

Persons with temporary ostomies face many of the same problems permanent ostomates have. It’s just as important for them to have support, reassurance, and teaching as it is for persons with permanent ostomies. They must learn proper skin care, stoma care, and pouching techniques. Often, stomas are not ideally situated on the abdomen, because of the urgency of the surgery. Thus, pouching and skin care can pose difficult problems.

Following temporary surgery, measures need to be taken to improve the patient’s health. He/she must be in the best condition physically to undergo the major surgery for reconnection. There is also a time for the patient to deal psychologically with past surgery, upcoming surgery, and possibly a newly diagnosed disease. It may be a difficult time with all the changes and new challenges. Often, there are many fears and unanswered questions. Other people with ostomies and ET nurses may provide reassurance and the answers to many questions.

Chapter Recognition Program

Our Chapter has been recognized by the United Ostomy Association as one of the top three winners in the nationwide Chapter Recognition Program.

Of the over 300 chapters of UOA in the country, we were chosen as a first place winner for our Chapter’s Internet Site. I guess we can now say our award winning site.

Ron Gould and his son originally dreamed of a ubiquitous site where people anywhere in the world would be able to obtain extensive ostomy information...at no cost. Their dream is a reality.

We would like to gratefully thank all of you who have contributed articles, notes and letter to our site as well as our many loyal supporters. It turns out that we have one of the largest and most comprehensive Internet sites for ostomy information anywhere in the world. Chapters regularly use our site for a resource for their own chapter’s newsletter.

We hope to continue the good work produced by our site. New articles appear every month, and many of our new members find our Chapter by searching the Web for ostomy...and reach us.

The Heart Doctor’s Funeral

A cardiologist died and was given an elaborate funeral. A “huge heart” covered in flowers stood behind the casket during the service. Following the eulogy, the huge heart opened, and the cardiologists' casket rolled inside. The heart then closed...sealing the cardiologist within the beautiful heart forever.

At that point, one of the mourners burst into laughter. When confronted, he said: "I'm sorry, I was just thinking of my own funeral—I’m a gynecologist." At that point, the proctologist fainted.

In Memory of...

In memory of their daughter Susan, Mr. and Mrs. Lewis Katz have donated a large number of ostomy supplies to our Chapter.  Her parents feel she would want others to benefit from the use of these supplies and honor her memory with their gift.

Susan was the recording secretary for our Chapter at the time of her sudden death.  Susan was a vivacious, loving and giving person.  Her presence among us certainly benefited our Chapter.  She is greatly missed and will be long remembered.

September Meeting Bake Sale

Muffins and cookies and cupcakes—oh my!  Yes, September 24th is that time again.  In conjunction with the annual Product Fair, where vendors display their latest wares and hand out free stuff, you can show off your baking skills (or those of your local bakery), at our UOA Bake Sale.  It's a Fun(d) Raiser, so come hungry and with a few dollars in your pocket.  Cakes and pies will be left whole; single-serve items will be plated in small quantities and wrapped.  You don't need to RSVP; just come to the meeting at 7:00 P.M. and bring some goodies.  If you have any questions, call Sally Schinberg at 847-364-0690.

The Ostomate’s Bill of Rights

It is the declared objective of the International Ostomy Association that all ostomates shall have the right to a satisfactory quality-of-life after
their surgery and that this charter shall be realized in all countries of the world.

A Person With An Ostomy Shall:

Receive preoperative counseling to ensure that they are fully aware of the benefits of the operation and the essential facts about living with a stoma.

Have a well-constructed stoma placed at an appropriate site, and with full and proper consideration to the comfort of the patient.

Receive experienced and professional medical support and stoma nursing care in the preoperative and postoperative period both in hospital and in their community.

Receive full and impartial information about all relevant supplies and products available in their country.

Have the opportunity to choose from the available variety of ostomy management products without prejudice or constraint

Be given information about their National Ostomy Association and the services and support which can be provided.

Receive support and information for the benefit of the family, personal care givers, and friends to increase their understanding of the conditions and adjustments, which are necessary for achieving a satisfactory standard of life with a stoma.

Receive assurance that personal information regarding ostomy surgery will be treated with discretion and confidentiality to maintain privacy.

Issued by the IOA coordination committee June 1997.

Golf Ball Story of Life

A professor stood before his Philosophy 101 class and had some items in front of him. When the class began, wordlessly, he picked up a very large and empty mayonnaise jar and proceeded to fill it with golf balls.

He then asked the students if the jar was full? They agreed that it was. So the professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles, of course, rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed that it was. The professor picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He then asked once more if the jar was full. The students responded with a unanimous—yes. The professor then produced two cans of beer from under the table and proceeded to pour the entire contents into the jar, effectively filling the empty space between the grains of sand. The students laughed.

"Now," said the professor, as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things—your family, your partner, your health, your children, your friends, your favorite passions—things that if everything else was lost and only they remained, your life would still be full."

"The pebbles are the other things that matter like your job, your house, your car. The sand is everything else—the small stuff." "If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for your life. If you spend all your time and energy on the small stuff, you will never have room for the things that are important to you.

Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your partner out dancing. Play another 18. There will always be time to go to work, clean the house, give a dinner party and fix the disposal." "Take care of the golf balls first—the things that really matter. Set your priorities. The rest is just sand."

One of the students raised her hand and inquired what the beer represented? The professor smiled. "I'm glad you asked. It just goes to show you that no matter how full your life may seem, there's always room for a couple of beers.

August 2003

Last Month's Meeting

Talk, talk and more talk—that was the focus of our meeting. Discussion groups made up of colostomy, ileostomy, urostomy, spouses and alternate procedures were formed from the approximately fifty participants. Special guests from Hollister—Rose Marie Tobin a biomedical safety specialist and Mike Cherry from engineering—joined the panels, and Mike helped provide these minutes.

Each panel had a moderator that led a roundtable discussion of topics. As you can imagine, there were different answers for each question. Here are some highlights, of course, respecting the privacy of all individuals involved:

Q When is the best time to consult an ET nurse?
A Generally, when you are having a problem or concern and want the advice of a trained, ostomy medical professional.

Q What tip would you pass on to someone who just had ostomy surgery?

A As difficult as it may be for us to believe, people really struggle to find authoritative sources of information. One person with an ileostomy asked shyly if others experienced discharge of effluent while they were sleeping. When assured by the rest of the table that this was normal she was visibly relieved that she was “normal”. The kicker is that she has had her ostomy for seven years and this discussion group was her first time to do a reality check!

Q What do you like about the products that you use or what would you suggest?
A Generally, we mostly use the products that we were introduced to at the hospital.

Q How do you know when to empty your pouch?

A This may seem a silly question to someone without an ostomy—as in when its full! Duh! But given there is no sensory feedback with an ostomy other indicators are required. Many times a “gentle hand pat” in the vicinity of the pouch was the tactile feed-back used. But, also others were anticipatory and emptied by schedule rather than need.

Q Do you feel a need to tell people that you have an ostomy? Why? Or, why not?
A Generally the answer was no, but in special situations; such as, when one person who regularly uses a Turkish bath where the clothing option leaves little doubt.

Q What emergency ostomy supplies do you carry and where do you carry them?

A This was a most interesting question because the answer has been affected by post 9/11. That is, we generally carry an emergency kit small enough to fit into a purse, pocket or satchel. This may have, at one time, included a pair of scissors. Now, this will cause trouble at every security screening...particularly airports. One potential remedy—which will not work at airports—is carrying a UOA issued card that identifies us as having an ostomy.  One person showed us their Hollister issued “Stoma Card” of a ten-year vintage for that same purpose...to identify the card carrier as having an ostomy, and doing so in a dozen different languages.

Q What was your most embarrassing ostomy moment?

A You guessed it...there were many interesting stories! Picking one, an obviously dignified woman was surprised at her granddaughter‘s parent-teachers conference because her granddaughter had used her ostomy pouch for show-and-tell...complete with graphical demonstration.

The lucky winner of our 50/50 was first timer Rich Ostry. Gerri Hesselberg won the consolation prize. We wish to thank all of you who brought treats to our Hospitality Table: Gerry Eiseman, William Konopacz, Sara Marnstein, Jane Michnik, Vera Miller, Renard Narcaroti and Helen Schneider.

President’s Message:

Dear Friends:

As I am writing this, it is now only a few days before seven members of your Board of Directors leave for Las Vegas and our National Conference. This will be my fifth Conference, and I am still excited about going. You might think that “if you’ve been to one UOA Conference, you’ve been to them all”, but I heartily disagree with that statement. Even though each conference is basically the same format, they are all very different:

· Every conference has an opening session, but all the speakers have been very distinctive and extremely inspirational in their own way.

· Every conference has almost the same medical update sessions, but we have all learned something new at each one we have attended.

· Every conference always has an ice cream social evening and a Banquet/Dinner Dance, but each one has had a special and festive theme and is always loads of fun.

· Every conference has an Exhibit Hall, but each one always had new exhibitors and many new products on display.

· Every conference has training sessions for chapter officers, but we always come away with new ideas for our Chapter.

· Every conference has a luncheon to honor exemplary chapters and volunteers, and each time our Chapter has been recognized.

· Every conference has a stoma clinic, and even though I’ve never taken advantage of it, I am sure many participants have come away with great suggestions for their ostomy management. (This year, I intend to sign up because I can always learn something new!)

And, the best part of attending these conferences is meeting other ostomates. No matter how many people you see there that you have met at prior conferences, you always meet new people with whom you form an immediate bond. There is nothing better than being able to talk to others about your concerns and know that they understand your feelings, and can relate to you on a very personal level. The camaraderie you may experience when you attend one of our Chapter meetings is multiplied by the hundreds when you attend a National Conference.

So, yes, I am really looking forward to attending my fifth conference and learning lots of new things and meeting many new people. By the time you read this, it will be too late for you to share in the experience this year. But remember it, and plan on attending the conference in 2004 in Tennessee. Meanwhile, we will share our experiences with you from Las Vegas at our August meeting. See you there!!

Jane Michnik

Coming Events

August 27—Our special guest will be Bari Stiehr, RN/ET from Alexian Brothers Medical Center. The meeting will feature a general question and answer session regarding insurance issues led by Renard Narcaroti. In addition, our Chapter officers will present an overview of what happened at this year’s UOA Convention in Las Vegas.

September 7—Gladbagger’s pool party. Vicky Palermo will be hosting this event. (See the Gladbagger’s article for details.)

September 24—The Chapter will be holding our Annual Bake Sale in conjunction with our Product Fair. Co- Chairs Roger Lotnick and Sally Schinberg are looking for people that like to bake and would be willing to bring items that we can sell at the bake sale. Individual portioned items would be greatly appreciated. Please contact Roger Lotnick if you can bring an item to the sale.

October 22—One of our favorite programs will again be offered by Sue Neu, ET. Sue will present the physiology of the various types of ostomies.

November—We are working to put together our biannual visitor’s training workshop.

December 10—The Gala Annual Holiday Party. We all bring a dish to share which makes for a delicious dinner. Plus, we have songs of the season and other interesting activities.

Friends of Ostomates Worldwide

If you have new ostomy supplies that you will no longer need—like if you changed sizes, please bring them to a Chapter meeting and donate them to FOW.

FOW repackages ostomy supplies and sends them to the very needy people in Third World countries. All the supplies we receive are given out freely to needy ostomates. FOW is operated completely by volunteers, and its operating funds are used to pay for the shipping. There is no fee or any kind of reimbursement accepted by us or by the medical facility distributing the supplies.

We now have regular hours! Mario Pardo has generously accepted the responsibility of managing the warehouse every Monday, Wednesday and Friday morning from 9:00 a.m. to 12:00 p.m. Our other hours—and there are plenty—are on a rotating basis.

We invite you to join our group of about 25 here in Glenview. Some of us come for regular shifts while others just come occasionally. How about adding your name to our list of volunteers? Please call Joan Loyd—listed on page two.

Joan has had a very long hospital stay because of complications from her surgery, but she is now home and quickly on her way back to health. Please say a prayer that her recovery goes well. Joan works exceedingly hard helping others. She asks nothing in return, but her work has benefited thousands of the most needy people in the world.

Remember...

All of you who renew membership in our Chapter during the “D” quarter are due. Our Chapter has 308 members.

Contact Frank Giorno—listed on page two—for further information.

Welcome New Member

Sam Hesselberg

Time, Your Bank Account

Contributed By Gerry Eiseman

Imagine: There is a bank that credits your account with 86,400.  It carries over no balance from day to day.  Every evening the bank deletes whatever part of the balance you failed to use during the day.

What would you do?  Draw out all of it?  Of course!  Well, each of us has such a bank.  Its name is time. Every morning, the bank credits you with 86,400 seconds.  Every night it writes off, as lost, whatever of this you have failed to invest to good purpose.  The bank carries over no balance.  It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day's deposits, the loss is yours.

There is no going back—there is no drawing against the "tomorrow". You must live in the present—in today's deposits. Invest it so as to get from it the utmost in health, happiness and success.
The clock is running.  Make the most of today. Time waits for no one.  Yesterday is history.  Tomorrow is a mystery.  Today is a gift.  That's why it is called the present!

A Tribute to Alice Pullen

By Dick Dorman

Some people come into our lives and go out quickly, others stay for awhile and touch our hearts so deeply that we are never the same.

—Unknown

Alice Pullen passed away on July 2, 2003. I have met many people that have helped me live a great life since my cancer surgery in January 1983 that left me with a colostomy. I must say that I received much of my help from the many useful hints that Alice included in each issue of our Chapter newsletter. These hints allowed me to go on with my life by following their instructions without the need to ask others for much assistance.

When Alice took over our Chapter newsletter in the early days of our organization, she helped transform it to became a most respected publication. In my opinion, the value of this newsletter became one of the primary reasons our Chapter grew to become one of the largest in UOA. Everybody wants a copy of The New Outlook. I would read newsletters from other chapters and in their pages would be articles giving publishing credit to our Chapter.

As our Chapter grew larger and our newsletter added more content, other chapters requested copies; E.T. nurses requested copies; retailers requested copies. During the time I was Chapter President, our circulation had grown above 500 subscriptions each month. (We currently have over 700.) All of this was due to the leadership of mostly one person, Alice Pullen.

Alice had been a member of UOA for about 30 years and was one of the first members of our Chapter. She attended almost every meeting, made notes of talks and subjects of each meeting, and put all that plus much more into the next issue. Also, she was on the mailing list of many other chapter’s newsletters. Her research on ostomy articles filled a file cabinet. Plus, she was a good steward of managing the expenses toward publishing the newsletter. She did all of the layouts, took proofs to the printer, picked up the finished paper, and—along with the help of good friends like Joan Loyd and Mario Pardo—folded, sorted, addressed and stamped each copy before delivering them in special order to the Post Office.

In addition, Alice and her husband Jack after each general meeting would take our left over “goodies” from the Hospitality Table to some floor at Lutheran General where night nurses were on duty and leave it for them to enjoy. They always told them it came from our Chapter, and you had better believe we were well thought of by the nurses for this simple gesture.

We are a Chapter of volunteers. We try to serve in the best way we can. Thinking back over all that Alice and her husband Jack did, it shows the dedication it takes in a special way to accomplish as much as they did in the years they served our Chapter and UOA.

We also thank her daughter Penny, who took over many of Alice’s tasks as Alice became ill and could not do all of them any more. It speaks so highly of a family who supported Alice as she lived a good life with her colostomy and did all she could to make a good life for others through our newsletter.

Thank you Alice and Jack—and Penny. God bless you from the bottom of our hearts.

Membership Renewals

Over the past month or two, it has come to our attention that the membership renewals—sent out by our national office—have had the wrong return address on them.

This means that if you were to renew recently, we may not have received your request. At best, you would have received your check back from the Post Office and called Frank Giorno—our Chapter’s dedicated membership chairperson—to find out why. At worst, your renewal membership was lost and you were inadvertently taken off our membership list.

If you find that you are not receiving The New Outlook or Ostomy Quarterly in the next few months or that your check was not cashed, give Frank a call. We do not want to lose even one person because of a clerical error.

We value each of our Chapter’s members, and want to make it easy for you to renew this important membership. Our membership accounting has been an increasingly difficult challenge for us as the national office works through their political issues.

Gladbaggers

Last month we had a wonderful event at the home of Kathy Kenney. Her home compared to magazine models—each room decorated with exacting detail.

We had a beautiful summer’s day which we enjoyed on her deck talking about all kinds of things. The eats and drinks were delicious. We would like to thank everyone who participated in making this a successful day.

We just found out about our unexpected good luck. Vicky Palermo is hosting the next Gladbagger’s event on Sunday, September 7 at 2:00 p.m. It will be a pool party at her home—she has a beautiful pool in her backyard. All those on the Gladbagger’s mailing list will receive a personal invitation. Or, call Jane Michnik for details. It will be a great time!

Osteoporosis in Men?

Contributed By Jane Michnik

Men over 50 have a greater chance of having an osteoporosis-related fracture than developing prostate cancer. The bone disease, which makes bones brittle and more prone to breaking, is associated most commonly with women, but it is under-diagnosed in men. Some of the risk factors include alcohol, smoking and nutrition. Also, men are more likely to develop the disease if they have had a family history of osteoporosis, kidney stones, pituitary problems or treatment with glucocorticoids—cortisone or prednisone.

Men over 55 who have lost two or more inches in height be tested immediately for bone density. Treatment may include diet changes and other therapies.

Publishing Request

Hi, my name is Katie Chafin, and I am an editorial intern from Rodale—a publishing company that produces ConvaTec's Health & Vitality Magazine.

Even though it's just mid-summer, we're already working on our winter issue. We are checking in with people in a search for someone with an ostomy who is grateful for their medical procedure, and who feels positively about the holidays. If someone in you Chapter wouldn't mind taking the time to jot down just a brief paragraph or two about their situation and their
thoughts on the winter holidays, I would love to hear your story!

Thank you in advance for any help you can give.
Katie Chafin, Rodale Custom Publishing Intern

katie.chafin@rodale.com , Tel: (610) 967-7666

Hereditary Colon Cancer Study

Evanston Northwestern Healthcare in collaboration with the Jewish Federation of Metropolitan Chicago have established a study funded by the National Cancer Institute. The investigation is focused on a gene mutation associated with an increased risk of colon cancer among the Ashkenazi Jewish population. This research project aims to learn about the significance of the mutation to determine follow-up strategies for prevention of colon cancer in those who carry the gene.

If you have had colon cancer or if you have had a relative with colon cancer and you are interested in participating in this study, please call 800-977-5232.

July 2003

Last Month's Meeting

Outstanding. That’s the best way to describe our last meeting. We had very interesting information presented to us in a most exciting fashion.

To start, Jennifer Dore, ET, made a wonderful presentation on the most common questions she receives from patients after ostomy surgery. They included:

· Can I shower with or without a pouch?

· What type of activities can I do?

· What kind of clothes can I wear?

· What can I eat?

· What is a bowel obstruction?

The answers to these and other questions may be explored by going to our Internet site at www.uoachicago.org .

Our featured speaker for the evening was Dr. Jeanette Fefles specializing in chiropractic and acupuncture. She provided us with state-of-the-art information regarding alternative medical treatments for different types of pain; the history of chiropractic; a description of acupuncture as well as rebutting common myths.

Did you know that when you “crack” your joints, you are actually releasing gas bubbles in the joints? Chiropractic techniques are designed as a primary treatment for most ailments of the entire body. Chiropractors are primary physicians and most insurance companies now provide benefits for treatment. Chiropractic physicians commonly refer patients to medical physicians for conditions best served by conventional medicine.

Acupuncture uses stimulation in a series of patterns to treat conditions such as: pain, internal disorders and even infertility, etc. It is a successful technique that people are more frequently utilizing because of its effectiveness without using drugs or surgery.

Dr. Fefles has recently moved her practice to new offices at:

11555 S. Harlem Ave.

Worth, IL 60482

She is accepting new patients and may be reached by calling 708-671-1444.

Jo Meissner, ET, visiting us from Coloplast was the winner of our 50/50. This was her first meeting, and she brought some free samples of some of the new and innovative products offered by Coloplast. We also wish to thank Joan Loyd, Vera Miller and Renard Narcaroti for bringing treats for our Hospitality Table; and to our special friends from Hollister, Inc., who have been attending every meeting since last year offering us their support.

President’s Message:

Hello Friends,

I received some very sad news a few days ago, and it has had a very strong impact on me. Susan Katz, our newly installed Recording Secretary, passed away on June 9. When I received the news, I was in absolute shock. She had just been to a board meeting the week before and was doing well. Susan suffered from Fibromyalgia in addition to Crohn’s Disease—the reason for her ostomy. But, she had been feeling better recently and was ready to become active with our Chapter.

She was going to be my roommate for the conference in Las Vegas next month and was finalizing her travel plans. I had called her to find out what arrangements she had made but did not receive a call back. When I found out the news, I called her mother to ask what had happened. It seems that she had been with her family on Sunday evening and was fine. She went to sleep and just never woke up. As of today, there is still no cause of death.

I have had many people much closer to me that have passed away, but for some reason, this one really hit me hard. She was relatively young—in her 40’s—and was just beginning to enjoy life again after many years of medical problems. I could probably have understood it if she had died suddenly from an accident or had been recently ill and her body could no longer hold out...but that was not the case.

Most of us have been very close to death, but have lived to tell about it and to go on with our lives. Right after our surgeries, we decided to live life to the fullest every day, because we came so close to losing it. But, over the years, we fall back into our old habits and return to our “normal” and hurried lifestyles. This was the case for me—until four days ago.

The saying “Live your life each day as if it was your last” immediately sprang to my mind when I heard about what happened with Susan. I haven’t been able to get it out of my head. It is certainly good advise. I know that for at least a while, I will try and remember it each day when I wake up, and make the most of that day, just in case…

Jane Michnik

Coming Events

July 13—Gladbagger’s Barbeque. Kathy Kenney has graciously offered to host our next Gladbagger’s event at her home in Alsip at 12641 S. Mansfield Ave around 2:00 p.m. The cost is $10 per person to cover eats and drinks. Please RSVP to Kathy at 708-389-4987.

July 23—An open discussion about ostomy issues. Do you have questions that you have always wanted to ask about your ostomy? Who better to ask then someone who has the same type of ostomy? People that have had ostomies for a long time may help you find solutions to your issues or refer you to viable sources. Plus, people experienced with caring for their ostomy may learn of advances in equipment from those with new ostomies.

August 27—Our meeting will feature a general question and answer session regarding insurance issues lead by Renard Narcaroti.

September 24—The Chapter will be holding our Annual Bake Sale in conjunction with our Product Fair. Co- Chairs Roger Lotnick and Sally Schinberg are looking for people that like to bake and would be willing to bring items that we can sell at the bake sale. Individual portioned items would be greatly appreciated. Please contact Roger Lotnick if you can bring an item to the sale.

October 22—One of our favorite programs will again be offered by Sue Neu, ET. Sue will present the physiology of the various types of ostomies.

December 10—The Gala Annual Holiday Party. We all bring a dish to share which makes for a delicious dinner. Plus, we have songs of the season and other interesting activities.

Friends of Ostomates Worldwide

If you have new ostomy supplies that you will no longer need—like if you changed sizes, please bring them to a Chapter meeting and donate them to FOW.

FOW repackages supplies and sends them to the very needy people in Third World countries that desperately need ostomy supplies. This equipment is given out at no cost to these people. All the supplies we receive are given out freely to needy ostomates. FOW is operated completely by volunteers, and its operating funds are used to pay for the shipping. There is no fee or any kind of reimbursement accepted by us or by the medical facility distributing the supplies.

We invite you to join our group of about 25 at our warehouse here in Glenview. Some of us come on a regular basis while others come occasionally. How about adding your name to our list of volunteers? Please call Joan Loyd—listed on page two.

Remember...

All of you who renew membership in our Chapter during the “D” quarter are due. Our Chapter has 302 members.

Contact Frank Giorno—listed on page two—for further information.

Welcome New Member

Ellis Brown

Krispy Peanut Scotchies

Joan Loyd brought a special treat to our May meeting and many asked her to share with them the delicious recipe to which she graciously agreed.

One (12 ounce) package butterscotch chips

Two cup peanut butter

Four cups Rice Krispies

Makes five to six dozen treats

Put butterscotch chips and peanut butter in a two quart bowl or pitcher that will go in the microwave. Microwave on high for one minute, then stir. Repeat. Stir until smooth. (If additional heat is needed after two minutes, cook 15 to 20 seconds at a time. Do not over cook.) When mixture can be stirred smooth, carefully fold in Rice Krispies. Drop by teaspoons onto waxed paper lined cookie sheets. Chill until firm. Option: Gently press mixture into a buttered 9 x 13-inch pan. When chilled, cut into one-inch squares. No microwave? Use a double boiler. The chips scorch easily—very gentle heat is needed.

“I think the claim that these are ‘nutritious’ is totally wishful thinking.  Anything with that much fat and sugar is at the total top of the food pyramid—unless you believe the four basic food groups are sugar, fat, alcohol and chocolate!”... Joan Loyd

Town Meeting on Stigmas

Reported By Renard Narcaroti

On Friday, June 27, Dave Rudzin, Ginnie Kasten and myself took part in a seminar sponsored by the Simon Institute. We participated in a discussion on societies perceptions regarding people with medical conditions that have traditionally been viewed with stigmas or negative connotations—like ostomy surgery. The moderators were Martha Teichner of CBS News et al. The leaders of over two dozen support groups and medical agencies were in attendance as well as individuals who spoke about their respective physical challenges.

Dave spoke elegantly on the mission of UOA as well as physical and psychological issues all people with ostomies must overcome. He told of the change in his own self-image with having an ostomy over most of his lifetime. Ginnie talked warmly of our members personal commitments to the mission of UOA and to the goal we have of the elimination of prejudges in society by setting excellent personal examples.

Our objective was to meet with the media and other medical groups to achieve a greater exposure for UOA. We want people with ostomies to know that there is an organization with a mission specifically designed for them.

We are invited to speak to many different groups about ostomy issues. Our participation fulfills part of the advocacy mission for our UOA Chapter. We do not have a chairperson for advocacy in Chicago. If you would be interested, please tell an officer.

UOA Election Results

This past spring, the board of directors of the Chapter cast our votes to fill positions at national UOA. There were nine candidates running for three openings on the UOA board. Directors at UOA are elected for a two-year term with half the board up for election each year.

We are pleased to report that our past-president, Dave Rudzin, has been re-elected as a member of the UOA board of directors. Among his other responsibilities, Dave is the national coordinator of the 30 Plus Network.

What’s New at Hollister

A drainable pouch that doesn’t require a stiff, bulky clamp to close is the latest addition to the Hollister line of quality ostomy products, and it may well represent the wave of the future.

New Image Two-Piece Drainable Pouch with Lock ‘n Roll closure is a secure, comfortable and easy-to-use pouch, thanks to a proprietary closure material that eliminates the need for separate clamps. That’s right...no clip!

Lock n’ Roll closure features a revolutionary integral closure system that uses pioneering plastic fasteners to create a seal that remains secure. The innovative closure material is rinseable, making stains and foreign matter easy to remove; and it has been tested wet and dry with no loss of security.

Additionally, New Image pouches with Lock n’ Roll closure are so easy to use that people with new ostomies can wear them immediately upon discharge from the hospital.

You may do this with one hand, in the dark or half asleep. You cannot fold the pouch up wrong, and you can actually feel the seal being formed. There is a little mini-click felt with your fingers as each plastic fastener connects.

New Image drainable pouches with Lock ‘n Roll closure were first introduced in Europe to uniformly enthusiastic reviews. People who had difficulty with traditional clamps—including two blind women and a man with severe arthritis in his hands—are able to use Lock ‘n Roll pouches with ease.

In addition to the new fastening system, Lock ‘n Roll pouches have two flexible strips at the drainable end of the pouch to help hold the pouch open for cleaning. These pouches may be easier to open, easier to clean and easier to fold and close. They can be used with any of the New Image Skin Barriers.

The New Image Two-Piece Drainable Pouch with Lock ‘n Roll closure comes in several sizes, with or without an integrated filter, in beige or transparent. To try a free product sample, call Hollister Inc., at 1-800-323-4060.

June 2003

Last Month's Meeting

By Joan Boden

Congratulations to all the Chapter’s new officers! Plus, we want to thank all our guests for attending the Chapter’s “May Installation Ceremony”.

It was an evening with lit candles and friendships. Ginnie Kasten, UOA’s National Secretary, was so kind to be our delightful Master of Ceremonies and perform the installation of our new officers. For the first year, we presented our capable and dedicated committee people and officers with “Outstanding Volunteer Certificates”. The Chapter sincerely wants to thank you for all your good work.

The rest of the evening was spent in conversations. For our new visitors and guests, it was a pleasure to meet you and we invite you to keep coming back.

We are proud to announce the other recipient of the Al Sarno Award for 2003 as our extra-ordinary chairperson of the Visitor’s Committee, Jeri Zaslavsky. Last month, we also announced that Gerry Eiseman won the award for outstanding service to our Chapter.

We would like to recognize Hollister Intl. for attending our meeting and offering their support. Their team made the worldwide introduction of a new pouch system called, “Lock and Load Pouch”. This is an entirely unique drainable pouch that does not use a clip. We will have more details about this in the July edition of The New Outlook.

Our Hospitality Table was deliciously supplied by Frank Giorno, Joan Loyd, Renard Narcaroti, George Rasof and Sally Schinberg. Karen Budnik was the winner of the 50/50. Our four consolation prize winners took home an ostomy pouch cleaning system.

Since this will be my final article of “Last Month’s Meeting”, I would like to thank you for all the wonderful comments about this article and for supporting me and our Chapter. It’s been my sincere pleasure in serving you. Wishing you a summer full of sunshine! See you at June’s meeting.

President’s Message:

Hi Everyone!

Let me introduce myself. My name is Jane Michnik, and I am the newly elected President of this Chapter. My name may be new to some of you, but others may recall that I held the position of President back in 1989-1991. I have been an active member of our Chapter since approximately 1982, and received the Al Sarno Award in 1988.

I had my ileostomy in 1974 due to ulcerative colitis, after suffering for over four years. But a year after my surgery, I began having more problems, and I was re-diagnosed with Crohn’s Disease. I was lucky enough to have two visitors help me. One was before my surgery, and the other was about a week after it.

Since I was only in my twenties at the time, the group tried to find someone my age to send to me as a visitor. At the time, they didn’t have anyone available, so they sent a woman in her fifties...but she looked wonderful! She was certainly more active than I had ever been, and I could not see where the pouch was under her tight jeans! After the surgery, someone closer to my age came to see me, and that also helped my emotional recovery, since she was living a “normal” life away at college.

I felt so well adjusted that I did not think I needed a support group, and anyway, the one or two meetings I attended at another chapter did not meet my needs, so I went on with my life. A few years later, a good friend of mine also had to undergo ileostomy surgery, and she was the one who found out about The North Suburban Chapter and promptly dragged me to the meetings. We both became very active, since we were involved in helping to form, with other Chapter members, a “young adults” ostomy group. Throughout the years—as we all aged—that group evolved into the “younger adults” group and is currently the “Gladbaggers” group—for all “young-at-hearts” of any age.

I have stayed active in the Chapter because I know what it means to talk with someone who has “been there and done that”. Nothing is more important to a person than knowing you are not alone when you go through something as traumatic as changing your body image. Our Chapter would be nowhere if we did not have active members who are present at our meetings, or available as visitors, to talk to those who have recently gone through ostomy surgery. Over the years, we all pick-up various new hints and tips, and I feel really rewarded to be able to pass these on to someone, and know that it will make their life a little bit easier.

I hope that now that you know a little bit about me, you will share your own stories with the rest of our Chapter during rap sessions and member panels. If you have had your ostomy a while, we need you to be there at meetings to help the new people, and if you have just recently had surgery, please come to our meetings to get answers to your questions. Please get involved with our Chapter. We need all of you to be there to help others. Hope to see you at the next meeting!

Jane Michnik

Coming Events

June 25—A special presentation on reducing pain in your life after ostomy surgery. This is the first meeting of its kind offered at our Chapter. We are pleased that Dr. Jeanette Kyros, specializing in pain relief using acupuncture and chiropractic medicine, will be sharing her insights with us. Dr. Kyros has her practice located in Elmhurst. This is a meeting you don’t want to miss.

July 13—Gladbagger’s barbeque. Kathy Kenny has graciously offered to host our next Gladbagger’s event at her home in Alsip. For details, please call or e-mail Jane Michnik—phone listed on page two, or n9yha@hotmail.com .

Friends of Ostomates Worldwide

We have just received pictures from the clinic in Russia distributing the much needed ostomy supplies FOW sent there. This was a very difficult country for us to ship our donated ostomy supplies. It took us months to worm our way through their complex customs department. But, through perseverance and a dedicated team of volunteers here in America, we achieved success.

We have just sent over $250,000 worth of donated supplies to India. We are anxiously waiting to hear that they have arrived safely and are being given to poor ostomy patients.

Once again, we’d like to give a special thank you to Mario Pardo for the extra-ordinary service he is providing at the warehouse. Mario has volunteered to manage the warehouse every Monday, Wednesday and Friday. On May 17, we had the regular dedicated group from Hollister Intl. at the warehouse.

All our people are volunteer workers, and we invite you to join our group of about 25. Some of us come on a regular basis while others come occasionally. All the supplies we receive are given out freely to needy ostomates. There is no fee or any kind of reimbursement accepted by us or by the medical facility distributing the supplies.

How about adding your name to our list of volunteers? Please call Joan Loyd—listed on page two.

Welcome New Member

Carol Bush

Kenneth W. Gardner

Behind The Scenes

March 1–April 30, 2003: A brief overview description of some of the activities of your UOA leadership during this period.

Advocacy

In March and April, UOA members took part in two events in Washington, DC, both aimed at increasing the funds for two federal agencies:

o The National Institutes of Health for research into diseases that lead to an ostomy;

o The Centers for Disease Control & Prevention for activities to promote colon cancer screening.

Team visits were made to Congressional offices to educate Congressmen about the value of research.

UOA continued to follow developments in California and Oregon—both states may terminate access to ostomy supplies for their residents who rely on Medicaid.

Government Affairs Committee (GAC) Chair Linda Aukett and GAC member Vince Puma presented information about United Healthcare and Florida Medicaid to a meeting of the Florida Association of ET nurses on March 15 to alert them to progress made and build a basis for collaboration in the future.

GAC Chair Linda Aukett, Consultant Colin Cooke and others from the Coalition for Access to Medical Services, Equipment and Technology (CAMSET) met with General Accounting Office officials to discuss the problems inherent in competitive bidding, a mechanism that Congress seems intent on implementing in urban areas. Since then we have submitted additional background information.

On April 4–6, Ann Favreau was part of a panel and distributed UOA materials at the Colon Cancer Alliance Conference in Washington, D.C.

Field Service

To further spread the word about the exciting changes occurring in UOA, your UOA leadership team has embarked on a “Meet the Chapters” campaign. Last year, we met with chapters in the Dallas/Ft. Worth and Chicago areas.

UOA Networks

We now have four distinct youth and young adult networks. Each network will have its own specific programming track at the UOA Annual Conference; will have its own space on the newly designed UOA Web site; will have article space available in the Ostomy Quarterly; and will have its own message board and chat room on the UOA Web site. Our youth networks:

The Parents Network which serves parents of children up to 17-years-old with ostomies or related procedures. This year we are introducing our Parents Scholarship Program where we will be sending families to our Annual Conference in Las Vegas for the entire event.

The UOA Teen Network serves the 12–17 year-old segment and complements our annual Youth Rally. They will be introducing a mentoring program where we will be matching up teens with a same sex young adult with the same procedure, like the Big Brother, Big Sister program.

The Young Adult Network focuses on 18-30 year-olds. This year, we will be conducting the first Young Adult Conference specific to this group. This conference will be July 17–19 in St. Paul, Minnesota.

The 30 Plus Network is for those young professionals, singles, newly married ostomates, etc. between 30-50 years old.

Conferences and Events

We now are moving into the busiest time of the year for conferences and events. In the next three months, we’ve planned the following:

· UOA Youth Rally, July 12–16 in St. Paul, MN.

· UOA Young Adult Conference, July 17–19 in St. Paul, MN.

· UOA Annual Conference, August 10–13 in Las Vegas.

· UOA Canada Annual conference, August 14–17 in Saskatoon, Saskatchewan.

If you would like to come to an event, complete detailed information is available by calling UOA at 1-800-826-0826.

Thank You From Youth Rally

A note we received from UOA, June 2003

Thank you for your Chapter’s generous gift supporting UOA’s 2003 Youth Rally. Chicago’s North Suburban Chapter of UOA has a history of making a difference in the lives of ostomates and their families from across the nation and across the world.

Ever since our first Youth Rally in 1978, we have been dedicated to emotionally healing young lives affected by ostomy surgery, continent procedures and bowel and bladder medical conditions.

UOA’s mission is to provide education, support, advocacy and most importantly hope for people with diversionary surgery. UOA endeavors to make the best use of your donation and from the many young lives that your donation will touch, once again we say thank you. You have helped make it possible for our special kids to have a tangible legacy of love.

Parking for those attending meetings at Lutheran General is available in the hospital garage for $3.00. But, most of us use the free hospital lot on the west end of the hospital or street parking.

Persuasion

Contributed By Jane Michnik

Airman Jones was assigned to the induction center, where he advised new recruits about their government benefits, especially their GI insurance.  It wasn't long before Captain Smith noticed that Airman Jones had almost a 100% record for insurance sales, which had never happened before.

Rather than ask about this, the Captain stood in the back of the room and listened to Jones' sales pitch. Jones explained the basics of the GI Insurance to the new recruits and then said: "If you have GI Insurance and go into battle and are killed, the government has to pay $200,000 to your beneficiaries.  If you don't have GI insurance, and you go into battle and get killed, the government only has to pay $6,000."

"Now," he concluded," which bunch do you think they are going to send into battle FIRST?"

The Colossal Colon

Chicago was the latest stop on a multi-city presentation of The Colossal Colon, an interactive enlarged exhibit of the colon meant to educated visitors about common intestinal diseases. Some of us in the Chapter volunteered to help with the exhibit. Many thousands of people found the experience enlightening. You may too. Just go to www.colossalcolon.com to find out more.

New ConvaTec Products

Paste helps prevent leakage and skin irritation by filling in and protecting skin around the stoma of a fecal ostomy. ConvaTec is introducing a new easy-to-squeeze tube for Stomahesive paste. It will also sport a new easy-to-open cap that doubles as a stand.

Both ConvaTec and Hollister have introduced new easy squeeze tubes, but they have not changed either Stomahesive or Premium paste. They have just made new plastic tubes which are easier to squeeze in order to remove the paste.

ConvaTec will soon to begin offering a new barrier, the SUR-FIT Natura Durahesive Convex Moldable Skin Barrier with flange. This is their brand name for the skin barrier portion of this two-piece system. It is a skin barrier that you adjust with your thumbs and will offer a custom fit every time.

People with hard-to-fit stomas usually need cut-to-fit skin barriers to get a good seal. With this moldable skin barrier, you simply use your thumbs to roll the moldable starter hole to the shape of your stoma, then position and affix the border of the barrier as usual. It easily molds to the shape you need—no cutting required—and hugs the base of your stoma for added security. Hopefully, ConvaTec will expand this moldable product to include flat barriers and their one-piece system, ActiveLife. ConvaTec will begin offering the option of buying Nature Durahesive skin barriers in 10-packs and ActiveLife closed-end pouches in 60-packs.

Be sure to visit www.convatec.com. ConvaTec has completely reworked their Web site. There are over 2,500 pages of information available to the visitor plus audio and video demonstrations including the correct way to change an ostomy system, detailed descriptions on ConvaTec’s ostomy product offerings and additional tips and hints to enhance your quality of life.

Ileostomates and the Closed-End?

By The New Outlook

We have found more and more ileostomates using closed-end pouches. We would like to explore some of the reasons they are used because they may provide a viable alternative for you.

There is no doubt that drainable pouches require some effort. They usually have clips—which may be positive or negative. But, they also may be easily drained in all types of environments. Plus, an ileostomate has the option of using a one-piece system with a drainable pouch which offers a low profile, a low cost and easy maintenance.

A two-piece system using a closed-end pouch is a convenient option. If used as a full-time system, you could simply dispose of the old pouch and attach a new one whenever it gets full. Of course, you’d be spending $15 to $20 a day just on pouches which may not be prudent. There are also pouch liners—as advertised in The New Outlook—that only cost about $.30 each of which none simply flush down the toilet. You still must place the used liner into another plastic bag and then throw it out.

But, we found that most users just empty the closed-end pouch by removing it from the flange and dumping it out, rinsing the pouch and then snapping it back onto the flange. This does weaken the flange—snapping it on and off about six to twelve times a day for up to seven days. Wearing a belt might be prudent in these cases. This method is relatively simple to implement except that it may be more messy than drainable systems.

It is important to note that if you decide to try a closed-end pouch, make sure that it does not have a filter. Ileostomates generally have output that is too liquid for filtered pouches. That means the effluent may leak through the filter. In addition, pouches with filters can never be rinsed out. They are made to be used only one time—like the way a colostomate would use them.

A standard closed-end pouch is smaller than a drainable pouch but holds the same volume of effluent...more or less. They are easily concealed beneath your clothing or bathing suit, and they are more comfortable. They also come in mini sizes for special occasions—like intimate moments or short exercise routines.

The biggest reason for using a closed-end pouch is that it has no clip. Clips will, at one time or another, stab the user in the leg or poke him/her in private places best left un-poked. The clip on a drainable pouch tends to rub against one’s leg. This does not happen when using a closed-end pouch.

There is also another minor point. A closed-end pouch cannot have the clip fall off. If you are worried about this happening, a closed-end pouch is a solution. But note, modern clips rarely, if ever, fall off if used correctly. But, it only has to happen once to be apprehensive.

Remember: Because today’s pouches—both drainable and closed-ended—lie so flat and fit so well, chances are good that you’re the only person who knows that you have an ostomy. But, we do want you to know about lifestyle alternatives available to ostomates.

The Al Sarno Award

This is a very special year for us in that we are pleased to award the highest honor in our Chapter to two people this year. One, we were fortunate to announce in April, Gerry Eiseman. At our May meeting, we announced that our dedicated Visitor’s Chairperson, Jeri Zaslavsky was the other winner.

Jeri has been an active member of our Chapter ever since her ileostomy surgery. She has been managing our Visiting Program for over five years including the Bi-Annual Visitor’s Training Workshop. Jeri has a special gift for encouraging people which she puts to profitable use in our Chapter.

The Visitor’s Program is one of our Chapter’s most important works. It can become a full-time duty for not just one person but many. Our Chapter fields requests for visits from all across the Chicago area. The job coordinating can become overwhelming.

Despite these obstacles, Jeri has always tried to support and encourage every new ostomate. Thank you, Jeri, for not only accepting a challenging leadership position in our Chapter, but also for being a living example of the high quality-of-life possible after ostomy surgery.

To my UOA family,
I would like to let you all know how much the Al Sarno Award means to me.  As we all know, it is very difficult to accept the idea of having surgery and in a sense becoming different than the majority of our family and friends.  It has been my pleasure to assist others in becoming comfortable with their new self, and I thank all of you for your help as well.
            UOA has made my experiences positive, and without the hard work and compassion of my fellow members, my job would be impossible.  Please continue with your extra-ordinary dedication, as I will with mine.  I look forward to my future as the Visiting Chairperson and will strive toward the progress that I know our committee will continue to make.  Thank you all again, 
Jeri Zaslavsky

Genes and Colon Cancer

Researched By Dave Rudzin

Scientists who combed the newly published map of the human genome said they had found a collection of new genes involved in colon cancer and that new cancer drugs may be able to counteract them. The family of genes, when mutated, could be involved in 30 percent of colon cancer. "Our findings open the door to individualized analysis and treatment of colorectal cancer," said Dr. Victor Velculescu.
Colorectal cancer is the third most common cause of cancer death in the United States, after lung cancer and breast cancer, killing 57,000 people every year. Several gene mutations have been linked with the cancer, as have a diet rich in red meat and animal fat, a lack of exercise, and obesity. Scientists concur that a genetic predisposition probably exists and then diet and a lack of exercise, and perhaps other factors, act on the genes to cause the cancer.

"Tumors of the colon are a major health problem. More than half the population of the United States will develop at least one such tumor, and in one-tenth of these, the tumors progress to malignancy," Dr. Bert Vogelstein.

The same lab has found most of the known colon cancer gene mutations, but they are of a nature that makes it hard to correct them with drugs. "The good news is that many of the genes responsible for common cancers, like colon cancer, have been identified," said Vogelstein. "The bad news is that most of these genes are tumor suppressor genes, the metabolic brakes on cells. These suppressor genes are inactivated in tumors, and since cancer drugs work by reducing the activity of enzymes, they won't work on such suppressors because a drug can't inhibit a gene that is already inactivated."

The team looked for mutations in genes that control production of proteins called tyrosine kinases. These proteins help abnormal cells to self-destruct—preventing cancer—and also help cancerous cells invade healthy tissue. There are 138 different tyrosine kinase genes. Vogelstein said because these genes are activated in cancer, and not inactivated, they should make good drug targets.

These mutations might produce proteins that could be inactivated by drugs—perhaps even a pill. "We envision that in the future, there could be tailored cancer therapies," Vogelstein said. "For example, each patient with colon cancer could have a diagnostic analysis to determine which kinases are activated by mutation—an easy task once you know which ones to look for. Then, that patient could be treated with a drug that specifically targets that kinase."

Gel Packets

By Helen E. Baker

     I have been an ileostomate since l983 due to ulcerative colitis and discovered a new product that cuts down on sloshing and frequent trips to the bathroom.  It is a little packet of dry gelatin-like material that turns liquid stool into a gel.

More than one company makes them.  I use the one called Osto-Gel Plus, and I order them when I order my ostomy supplies from Northeast Express.  I hasten to add that I have no financial or other interest in this product, just want to share this with other ileostomates, as it has made my life much easier, believe me...

Note: This product is covered under the new Medicare guidelines for ostomy supplies.

May 2003

Last Month's Meeting

By Joan Boden

Happy 28^th Anniversary! What a turn out. Many thanks to everyone who came out to celebrate.