January 2007

 

Last Month’s Meeting

 

     What a beautiful day for us to have our annual Gala Holiday Party.  We had, as usual; many of our members come early to help with the decorations and preparations for the evening. 

     Our guests brought something to eat or drink for our buffet dinner selection . . . this year we had the best selection of dishes ever.  Mike Cherry from Hollister, Inc. donated a large stuffed snowman with his sled for us to raffle off.  Renard entertained us on the piano with songs of the holiday season.  We want to thank everyone for coming and especially those bringing the tasty dishes for us to share.

     Jerry and Sally Schinberg were the masters-of-ceremony.  They orchestrated bingo games—cleverly using participants’ names as squares—where the prizes ranged from new cars to exotic vacations.  The festive night would not be the same without singing carols.  We finished off the evening in our traditional manner by singing The Twelve Days of Christmas.  All had a joyous time!  From all of us here at our ostomy Association, we wish you and your families a happy, healthy and prosperous New Year! 

     According to our new bylaws, we will have our Association elections in January.  The slate of candidates includes:

Jane Michnik, President

Renard Narcaroti, Vice President

Tim Traznik, Treasurer

Joan Loyd, Director

Rhoda Gordon, Director

If you have a talent that you would like to share by participating in one of our many diverse committees, please let us know.  In addition, we have the Board position of Secretary open.  Some people invest as little as an hour a month outside of our General Meeting leading a committee.  If we all pitch in, it makes the burden lighter and enhances our creativity.

    

Coming Events  

January 24—We are fortunate to have the president of one of the leading ostomy supply  retailers in the world, Erik Kolacinski from Mark Drug Home Healthcare, accept our invitation to come and visit us to talk about, “How to Buy Ostomy Supplies . . . .”

February 28—A talented holistic nurse is coming to talk to us this evening about, “How to stay healthy with an Ostomy.”  This is a message we just cannot miss. 

March 28—Mary Jane Wolfe, past president of FOW and the Secretary of UOAA, will present a slide program showing the good work of the Youth Rally.  It is inspiring to see the dramatic changes a person can achieve with a little support.  This is a program especially designed for people of all ages who have gone through ostomy surgery.

April 25—Our Anniversary Meeting will feature another informative presentation by one of the leading researchers and practioners in the field of ostomy care . . . Jan Colwell, RN, MS, WOCN from the University of Chicago, and President Elect of the WOCN.

May 23—Our special friends from Hollister, Inc., specifically Mary Rome and a group of customer care specialists, are coming by to talk to us about the wonderful resources available to us, whenever we have ostomy issues we cannot solve ourselves.

June 27—Our “Welcome to Summer” meeting.

July 25—We are honored to have Madelene Grimm RN, MS, WOCN from Rush North Shore come to speak to us on the topic, “Do people with ostomies really have sex?”  This will be her first visit to our Association.

 

Lake County Ostomy Assn.

     You are welcome to join us on the third Saturday of every other month from 10:00 AM until 12:00 noon.  We hold our meetings in the cafeteria at the world headquarters of Hollister, Inc. in Libertyville. 

We need your participation in order to keep our group viable.  Contact any board member with questions or suggestions:  Barbara Canter, 847-394-1586; Barb Fiene, 847-740-5492; Carol Rhodes, 815-459-2691 or Judy Gaughan at judy.gaughan@hollister.com .

 

Southwest Suburban Chicago

 

     The Southwest Suburban Chicago Ostomy Support Group is an entirely volunteer ostomy association dedicated to the mutual aid, education and moral support of people with ostomies and their families.  Meetings are held at 7:30 PM on the third Monday of each month throughout the year, except July, August, December and January.

 

2007

February 19—Little Company of Mary Hospital

                                                                  Potter Pavilion

                                                                  2800 W. 95th St., Evergreen Park

March 19—St. Francis Hospital

                                                                  127th & Western Ave., Blue Island

April 16—Palos Community Hospital

May 21—Oak Lawn Library

June 18—Little Company of Mary Hospital

                                                                  Potter Pavilion

 

     For information regarding this special ostomy group serving Chicago’s greater southwest side, please call Edna Wooding, WOC nurse and association President, at 708-423-5641.                                                                              

 

 

Support Your Ostomy Association

 

     We are now offering free membership to our Association.  To provide for our few expenses (mainly the publishing of The New Outlook) we need your assistance.  Please send a contribution to help maintain our group’s viability.

 

Name & Address: ___________________________

__________________________________________

Send To:

Ostomy Association of Greater Chicago

Mr. Tim Traznik, Treasurer

40 Fallstone Drive, Streamwood, IL  60107-1079

 

Cancer Wellness Center

 

     The Cancer Wellness Center is an organization dedicated to helping anyone affected by cancer to lead a more fulfilling life through self-help and empowerment.  Staffed by clinical professionals, the Center offers a full range of free psychosocial support services, resources and educational opportunities made possible through private philanthropy.  There are many different programs on a variety of subjects running virtually every day of the year.  One of them will be:

Integrating Acupuncture and Herbal

Medicine with Conventional Cancer Care

Wednesday, January 24, 6:30 PM to 8:00 PM

Presenter: Stephen Bonzak, L.Ac., Dipl. C.H.

     Research has shown that acupuncture and herbal medicine improve the effectiveness of conventional treatment and improve quality of life.  This knowledge may provide people with cancer additional options during treatment.  Specific topics will include how acupuncture and herbal medicine can enhance the effects of conventional cancer treatment, improve psycho-neuro-immunological functioning, improve symptom management and improve psycho-spiritual wellbeing.  This program is offered at no charge.  RSVP 847-509-9595.  The Cancer Wellness Center is located at 215 Revere Drive in Northbrook.

    

Friends of Ostomates Worldwide

 

     FOW is a charity made up exclusively of caring volunteers for sending desperately needed ostomy and medical supplies to people with ostomies in countries where these products are not readily available.  We obtain these supplies by donations from individuals and groups who have brand-new unneeded ostomy equipment. 

     Our world headquarters is located right here at 4304 Regency Drive, Glenview.  It is staffed with dedicated people who volunteer their time and talent to help this most worthy cause.  Mario Pardo, a former warehouse superintendent, manages the facility Monday, Wednesday and Friday from 9 a.m. until noon.  Joan Loyd manages it on Tuesdays and Thursdays.  Mike Cherry manages a group of Hollister, Inc. employees who come on the third Saturday morning of each month. 

     We always need capable help.  When you are able to assist—if you can come on a regular schedule or if you can give just a few hours occasionally—give Joan a ring at 847-724-8002. 

 

IBD Patient Symposium

 

     On Saturday, March 10, we will once again participate, for the eighth year in a row, in the annual Crohn’s and Colitis Foundation of America’s IBD Patient and Family Symposium, “Knowledge is Power”.  We have been invited to set up a booth so that visitors at the show have the opportunity to talk directly to us that experienced inflammatory bowel diseases and have gone through ostomy surgery.  Especially relevant are those of us that are former ulcerative colitis patients and are now completely cured of that horrible and humiliating disease.  We not only talk to other people who now are going through the same trials as we did and communicate how ostomy surgery changed our lives; but actually seeing that we look like everyone else dramatizes the wonderful future they can choose.

     The Symposium starts about 8:00 AM and runs for most of the day.  It is held at the Donald E. Stephens Convention Center in Rosemont, IL.  Many of the leading physicians and practioners specializing in IBD from around the world will be there making presentations.  For more information about the Symposium, contact CCFA at 1-800-886-6664 or www.ccfa.org .

 

Safe Travel Tips

By Joseph Rundle, Aurora, IL Ostomy Support Group

 

     With the terrorist alert on high and many concerned about safe travel at this difficult time, I thought I would offer you some useful tips.

1.      Do not ride in an automobile.  Autos cause 20% of all fatal accidents.

2.      Do not stay home.  That is where 17% of all accidents occur.

3.      Do not walk across the street.  Pedestrians are victims of over 14% of all accidents.

4.      Do not travel by air, rail or water.  People have 16% of all accidental deaths because of these activities.

However, only .001% of all fatal accidents occur at your local ostomy support association’s meetings.  Moreover, virtually none of these happens during the business meetings.  Obviously, the safest place to be is at your local ostomy association meeting.  You have better go to the next one, just to play it safe.

 

Concerns with the J-pouch

By Dr. Tracy Hull, Cleveland Clinic

 

     Patients with ulcerative colitis (uc) who were treated surgically previously underwent a total proctocolectomy with permanent ileostomy.  However, in the late 1970s, when the pelvic pouch (J-pouch) procedure was first introduced, the surgical approach to uc was revolutionized.

     The pelvic pouch has now become the “gold standard” in surgical treatment.  Although the operation avoids a permanent stoma and usually improves the patient’s quality-of-life, it does not restore the bowel function to normal.

     Patients can expect to have many stools per day—as few as two or three for the fortunate few and as many as 40 for the less fortunate, with the average being around eight—and these stools are pasty to watery in consistency.  As with any bowel operation, patients experience many changes, both short- and long-term.  This article will discuss some of the potential long-term problems that patients with a pelvic pouch may experience.

     Diarrhea: The function of the pelvic pouch will change over the first year—improve as the pouch stretches and becomes larger after the ileostomy closure.  However, there are still some people who have 20 bowel movements or more, daily.  Dietary changes may help these people to decrease the number of bowel movements.  Foods, which have been found to help decrease the water content of the stool, may help to reduce the number of trips to the toilet.

     These foods include applesauce, bananas, rice, creamy peanut butter, potatoes, cheese, marshmallows, pretzels, toast, yogurt and tapioca pudding.  Bulking agents such as Metamucil, Citrucel, Fibercon or Konsyl also help thicken the stool.

     These products are ingested with little fluid to allow extra fluid in the gastrointestinal tract to be absorbed.  A doctor—to slow down stools—sometimes prescribes medications such as Lomotil or Imodium.  They should not be used without your doctor’s approval.  Limiting the intake of fried and fatty foods and milk products may decrease diarrhea.  Reaction to foods varies with each individual and other foods may be found to increase the amount of stool produced or change the consistency. 

     Bowel obstruction and emptying concerns: To construct the pelvic pouch, the small bowel is stretched, along with the blood vessels that provide blood to the pouch, in order to reach the anus.  This stretching may predispose you to bowel obstructions from scar tissue, twisting or kinking; surgical intervention may be required to relieve the obstruction.  Another reason, which may lead to problems with pouch emptying, is a narrowing or stricture at the pouch-anal joint (anastomosis).  This is diagnosed by an exam of the anal area.  Strictures may cause symptoms that result in a progressive need to strain more and more to move your bowels.  Usually, dilation solves the problem and rarely is an operation needed to correct the problem.

     Pouchitis: Pouchitis is a non-specific inflammatory condition of the pouch.  The cause is unknown, but it occurs more frequently in patients who have a J-pouch for IBD versus those who have one for familial polyposis (FAP).  Patients are at risk to develop pouchitis over their entire life, as long as they have a functioning pelvic pouch.  For some patients, pouchitis is an isolated event, but others can experience multiple episodes or even continuous “chronic pouchitis.”

     The symptoms are similar to a mini-attack of colitis.  Patients report increased bowel movements, pelvic pain, abdominal cramps, malaise, fevers or blood in their stools.  However, it is common for patients with a pelvic pouch to notice blood on the toilet paper with normal function of the pouch and yet not have pouchitis.  The most common treatment is Flagyl (metronidazole) 750 to 1500 mg daily for 7 to 14 days.  This is effective about 85% of the time.  Improvement is usually seen within 48 hours.

 

Emergency Card

Contributed By Fred Shulak

 

     In some recent correspondence from the UOAA, they suggested that people with ostomies carry medical information on their person in the event that they require emergency care.  In as much as so many of our members are seniors, however, an emergency can befall anyone at anytime and in a multitude of places, I thought you would like an outline of what they suggest. 

 

Emergency Room Information for Ostomates

 

1.      A brief medical history of when and why the ostomy was performed as well as any other important medical information

2.      List each of your doctor’s names, address’s and telephone numbers

3.      List the medications you take, their strength, dosage and reason you take them.  Note:  Most pills with an enteric coating will pass through the stomach and into the small intestine within 45 minutes.  They will end up in the ostomy pouch of a person with an ileostomy almost intact.

4.      List your allergies and the allergies you have to all know medications

5.      Provide your ostomy data, i.e., ostomy type, stoma size, supplies used

6.      Provide insurance data, i.e., your primary provider, certificate number and telephone number; supplemental coverage certificate or policy number

7.      In case of emergency notify:

 

The Fungus Among Us

By Kathy Dahn, RN, Riverside HealthCare Kankakee, IL


     My patients frequently tell me how good it feels when they remove their ostomy system and bathe the skin around the stoma with warm water.  A bit of itchiness at that point is normal.  What is not normal is to have severe itching under the skin barrier while you are still wearing it.

     There may be several reasons for this, but one of the most common is a fungal infection.  This is not a cause for panic.  Many people worry that having a fungal infection indicates they are not clean and that is simply not the case.  Fungus thrives where it is warm and dark and moist—a great description of the environment under a skin barrier.  The peristomal skin (the skin around the stoma) will usually be a hot pink or strawberry-red when a fungal infection is present.  The skin may be intact or there may be places where the top layer of skin is missing, leaving an open wound which is red and moist and tender. 

      The fungal infection can be treated in different ways with the main difference being the use of a powder versus a cream product.  Regardless of whether you use a powder or a cream, your skin barrier will probably not adhere for as long a period as you are accustomed to, so beware.  My sixth grade teacher used to say, “Fore-warned is fore-armed.” so consider yourself warned. 

     Nystatin (mycostatin) powder is a product that will combat the fungal infection.  Powder is especially helpful when there are many areas, which are open and moist.  To use the powder, clean and dry the peristomal skin well, then apply a light dusting of the powder to the affected areas.  You can place your skin barrier directly over the powder or you can apply skin prep over the powder to help achieve a tighter seal.  Remember: skin preps may only be used on standard wear barriers and never on extended wear. 

     Another method, which I frequently use, is to apply Lotrisone to the entire reddened area.  Lotrisone is a combination product with clotrimazole to fight the fungus and betamethasone, an artificial steroid like prednisone to decrease the itching.  By the time patients come to see us with a fungal infection, they are frequently so miserable with the constant itching that we elect to use the Lotrisone to provide immediate relief. 

     At this point, I am sure you are probably thinking . . . Lotrisone is a cream and the skin barrier will just slip right off, and your concern has some merit, although rubbing it in well and applying a powder over it usually provides a satisfactory base for the skin barrier to skin just fine.  To help achieve a tighter seal, especially for people with oily skin, we sometimes cover the Lotrisone with a second skin, Extra Thin Duoderm.  Extra Thin Duoderm is just what it says it is—it is very thin and it adheres to the skin when the body heat softens the Duoderm.  Skin prep can be applied over the Duoderm to increase adhesion, and then the skin barrier can be placed in the usual fashion.  The edges of the Duoderm may be secured with tape as needed.  One little hint about using the Extra Thin Duoderm: if you are cutting a hole in the center to accommodate your stoma, you will need to cut the hole smaller than usual, as the Duoderm tends to stretch somewhat when you remove the paper backing. 

     There is no specific amount of time you must use the antifungal products.  They should be discontinued once the peristomal skin looks and feels completely normal.  If you have had your ostomy for years and never had a fungal infection before, you may wonder, why now?  One reason is that our immune system becomes less efficient as we age.  In addition, increased use of antibiotics not only kills the bad germs, but wipes out our normal flora—the good germs that normally live in our body.  Our normal flora helps to keep the bad germs in check so when the normal flora is decreased; the fungus can take over—sort of a “when the cat is away, the mice will play” scenario.  And of course, summer heat can cause moisture under the skin barrier through perspiration.  I hope this helps to clarify some of the confusion about “the fungus among us.”

 

Medicare Scams

 

     Illinois Attorney General, Lisa Madigan, is warning Medicare beneficiaries that seniors have reported receiving telephone calls from highly aggressive individuals who claim to represent Medicare.

     Seniors report that these callers tell them that their Medicare account has been canceled, the card lost and benefits terminated.  Callers then instruct the seniors immediately to provide personal information including their Social Security number, bank account number, insurance information and date-of-birth. 

     In a recent press release, Madigan said, “These are fraudulent attempts to obtain personal information that could be used to financially exploit Medicare beneficiaries in various ways.”  Madigan urged Medicare beneficiaries not to divulge personal financial information over the phone to unsolicited callers.

  

Showing Scars to Save Lives

 

     For the third year in a row, young cancer survivors have bared their bellies in a calendar that brings attention to a deadly disease few want to talk about–colorectal cancer.  Bob Baker, 45, of Washington Depot, is Mr. December in the 2007 Colondar. 

     The 2007 Colondar was created to bring attention to the fact that 15,000 people every year will be diagnosed with colorectal cancer before the stereotypical age of 50.  It is not just a calendar with beautiful model-survivors revealing their surgical scars–it also educates about colorectal cancer by telling a small part of each of the models’ stories. 

     In addition to Bob, there are 24 other models who were diagnosed in their teens, 20s, 30s and 40s–the youngest at just 13, decades before most people even begin to think about getting screened.  The models include a 17-year survivor who was told he would only live a few months; sisters who were diagnosed just ten weeks apart; an Army officer who says having cancer was scarier than being in the Pentagon on September 11; a third grade teacher who was diagnosed while her mother was undergoing treatment for colon cancer; and a former NBA player who believed he was in excellent health.  They are all ordinary people who are sharing their extraordinary stories of surviving colorectal cancer to prove that anyone can get the disease at any age. 

     Bob’s story started at the age of 15, when he was diagnosed with an inflammatory disease of the colon called ulcerative colitis.  “Because of the colitis, I knew I was at high risk to get colon cancer, but I tried to put it out of my mind,” Said Baker.  “I’m a positive person and I just didn’t want to go there.  By age 40, I felt particularly sick and had difficulty working, and I knew something was wrong.  One day I finally found the courage to call my doctor and say, ‘I think something’s wrong.’”

     Bob’s doctor had him come in immediately for a colonoscopy, and he found a tumor about the size of a golf ball.  Bob had stage II colon cancer.  “It was right before Christmas and I had to wait for the holidays to have surgery,” said Bob.  “I didn’t tell anyone at first; I just went.  My surgeon gave me the option to have my entire colon removed, but I was not prepared to do that, so I just had part of my colon removed.  A year and a half later, the colitis came back with a vengeance and was worse than ever.  Before, the thought of getting my colon removed and having an ostomy had been unthinkable.  I literally never thought of it.  But this one particular day, I woke up with it fresh on my mind.  It was right, and I knew it.”

     Bob had his colon removed and got an ostomy, an opening in his abdomen where waste is discharged into a bag.  “My family missed out on a lot of me because I had colitis and couldn’t participate, so it was kind of normal for me not to be there.  When I got my ostomy, all of a sudden I was there and willing and able to do things with them, and they were thrilled.  They didn’t care about the bag; they had me back.”

     “Other than having children, getting an ostomy was probably the best thing I’ve done in my life.  It was also the hardest thing.  A chronic illness is a very insidious thing.  I was sick for 27 years, and I literally forgot what it was like to feel well.  The ostomy has given me my health, my freedom and it has given me purpose.  It has become my passion.”  Bob was recently named to the Board of Directors of the United Ostomy Associations of America (www.uoaa.org), he is the President of his local ostomy support group and he often volunteers to help others with ostomies.  “I’m really proud that I get to help people locally.  I think it is important to talk to people one-on-one as well as working on bigger projects.  I have been visiting people in nursing homes and in hospitals, and that is good.  I like it.  If I can make an impact that way, I’d be happy.” 

     This fall, Bob was honored as a recipient of one of five regional Great Comeback Awards, which recognize people living with colorectal cancer, an ostomy or irritable bowel disease (Crohn’s disease or ulcerative colitis).  The program was founded in 1984 by former San Diego Charger place-kicker Rolf Benirschke, also an ulcerative colitis patient who had his colon removed during his third season with the Chargers. 

     The price of the 2007 Colondar is $15.00 including shipping and handling within the United States.  It is available for purchase at www.COLONDAR.com and at selected locations across the country.  2007 Colondar sponsors include the Colon Cancer Alliance (CCA), Colorectal Cancer Coalition (C3), the Figg Tree Foundation, Glens Falls Hospital and Olympus America. 

     Sales of the 2007 Colondar benefit The Colon Club, a nonprofit organization dedicated to educating young people about colorectal cancer.  The Colon Club is best known for creating the Colossal Colon®, a 40-foot long replica of the human colon that has traveled across the country since 2002.  For the past three years, The Colon Club has produced the award-winning Colondar, which has won a 2005 American Graphic Design Award, a 2006 Albany Ad Club Nori Award and both 2005 and 2006 Communicator Awards of Distinction. 

     To read more about each of the models’ stories, visit www.colondar.com.  To request hi-resolution photographs of the Colondar or to set up interviews with models, please contact Molly McMaster via email at molly@colonclub.com or call (518) 879-9815.

About The Colondar

     Now in its third year, the Colondar is becoming increasingly well known throughout the colorectal cancer community and beyond.  Fifty-three models have posed for the Colondar, and over 20,000 Colondars are now in circulation all over the world.  The Colondar is dedicated to the life of 2007 co-cover model Erika Kratzer, who is the original inspiration for the Colondar.  Erika was diagnosed with stage IV colon cancer at the age of 22 and was given little hope of survival.  After three surgeries, two rounds of chemotherapy, and one recurrence, she just celebrated her sixth year of survivorship and her fifth year cancer-free.  Erika was Miss November in the 2005 Colondar and her eye-catching abdominal scar has graced the cover of every Colondar. 

About The Colon Club

     Molly McMaster, a colon cancer survivor who was diagnosed on her 23rd birthday, founded the Colon Club in 2003 and Hannah Vogler, whose cousin and Molly's friend, Amanda Sherwood Roberts, died of the disease at the age of 27.  Their main goal is to educate as many people as possible, as early as possible, about colorectal cancer in interesting and out-of-the-box ways.  Their wishes are for people to have "colon talk" in their everyday lives, to know the risk factors and symptoms, and to be screened when it is appropriate for them. 

     The most well known project of The Colon Club is the Colossal Colon®, a 40-foot, 4-foot tall crawl-through replica of the human colon designed to educate the public about colorectal cancer.  "Coco," as the Colossal Colon® is affectionately known, is dedicated to Amanda.  It was unveiled in March of 2002 and has traveled to almost 100 cities in over 40 states as well as Canada.  The Colon Club’s website hosts a message board that is primarily designed for younger patients and survivors of colorectal cancer.  Since it became active, the message board has averaged over one new user per day, and currently serves survivors of all ages from around the globe. 

 

Working . . . with an Ostomy

By Icamor Snid

 

     The ostomy surgery was a success!  You have come home from the hospital now for about two months, are gaining your strength back and are feeling more comfortable with your ostomy.  What first seemed like an insurmountable task in the hospital—learning to empty your pouch and change your ostomy system successfully—is becoming easier to manage and service in your own home.

     “Maybe this will work out after all”, you think to yourself.  One day leads to the next and before you realize it, the weeks have gone by and now it is time to return to work.  What do you do now? 

     While some of your associates may be aware that you had some type of surgery, most will not know much, if anything, about what an ostomy is.  Of course, how much detail you wish to share with people at work depends on you alone.  Some of us might simply say, “Oh, I was very sick and required abdominal surgery, but the surgery cured me and I am feeling much better.”  Others may bore the bageebers out of their fellow workers by going into intimate detail about their new sporty elimination process.  One needs to share only that information that is comfortable discussing.  Most people are asking about surgery only to be polite anyway.  Some may be “nosey” but even they will cool down quickly when you start talking about elimination.  You see, they will become very scared that you will ask them about their poop.

     It is prudent to let your immediate manager know that you have had abdominal surgery.  Realize that very few people will understand the words ostomy or diversionary surgery, so be sure to speak to people in simple, easy-to-understand language so as not to confuse them.  It is rarely necessary to go into the technical details about your illness or your new ostomy; people will not be able to picture it correctly anyway.  This is one of the reasons we belong to support group.  We are able to share details of our most intimate lives with others who understand what we are talking about and the language we are using. 

     While talking privately with your manager, make sure you reassure him/her that your surgery will not interfere with your ability to perform your job.  In fact, mention that you should now be able to exceed his/her expectations of you and for him/her to expect extra-ordinary job performance.  We have been told that an ostomy may sometimes limit ones performance, however, we have never, ever heard of such a case, except in situations of chronic self-pity. 

     Terry Green, a teacher from Nottingham, England, openly shared his ostomy surgery experience with his 10 and 11-year-old pupils.  “When I went back to school after surgery and receiving a temporary colostomy, my colleagues counseled me not to discuss it with my pupils as they were sure the kids would us it against me.  I trusted my pupils, so did not heed the advice and explained to each class what had been done for me during the operation.  I remember well one day in class my stoma let off wind in a distinctly audible way . . . what happened?  Not a sicker, a giggle or a comment came from the class.  I had trusted them with a personal confidence, and they in turn respected that.”

     Most employers will be accepting of people coming back to work after ostomy surgery.  In fact, most are very happy that an employee is healthy and able to work reliably once again.  There were rare instances in the past where people with ostomies have been reassigned to different positions or attempts made to force them to leave their employer for no other reason than that they had an ostomy.  This is so rare that we are a bit loath to mention it.  But if it does, it is important for you to familiarize yourself with the provisions of the Americans with Disabilities Act (ADA), which you can learn all about at the following Internet site www.usdoj.gov/crt/ada/adahom1.htm .  A good resource is Advocacy for Patients with Chronic Illness, Inc. at www.advocacyforpatients.org, where you can obtain information, advice and advocacy services.  That organization publishes a book entitled, Know Your Rights: A Handbook for Patents with Chronic Illness.  The book also covers insurance and Social Security issues as well as your rights under ADA and the Family and Medical Lease Act (FMLA).

     So, now that you are back to work successfully and resuming your duties, it is the time when you need to be prepared for those rare times an emergency may occur; i.e., you have a leak.  This is especially relevant to people who are in their first year after ostomy surgery.  There are often operator errors that occur and lead to challenging situations of ostomy system failure.  You may need to change your ostomy system, or a part of it at work, shopping, during sports, seeing friends and family or whenever.  You may have your own ideas of how to prepare and/or plan for these times. 

     Everyone should have an emergency kit of some sort with you or available to you at your workplace and when you go out.  This kit should include a complete ostomy system change—skin barrier, pouch, paste, clip, wipes, disposal bag, etc.  A complete change of clothes is also prudent to have available.  We would like to dramatize a case we know about.  He was playing golf, it started to rain and his shoes became completely soaked.  He was going for a snack after golf and was able to change his socks and shoes from his emergency kit.  What?  Did you think this was an ostomy example?

     When members of the UOAA General Discussion board were asked recently how they plan for and deal with the unexpected at work, those times when a quick change is in order, here is some of what they had to say.  Maybe some of their experiences will be helpful to you in planning your strategy.

     Linda Penelli from New Jersey, who worked as a county welfare caseworker, luckily never needed her emergency kit.  She shared, “The spare kit that I keep in my desk just gets shoved further and further back.  I have to mark my calendar to remind myself to bring a fresh one to switch out the old one.  I never needed to use one in the seven years since obtaining my ostomy.”     

     Mary Miller, an accountant with an ileostomy keep spare ostomy supplies in her purse, in her gym bag with exercise clothes and in a locker at work.  “My employer put personal lockers in the ladies restrooms.  That has been a convenient place for me to store my supplies.  I also keep some aluminum foil with my supplies, which I would use to tightly wrap around a used skin barrier and pouch if I ever needed to discard them discretely.”

     Caroline Polochewicz shared “My two-year old ileostomy is pretty much a non-event at work.  Only one time did I had an “opps” was in the bathroom due to being inattentive.  I cleaned up without anyone noticing.”  She keeps spare ostomy supplies in her briefcase and exercise bag.  She has a change of clothes at work, but has never had to change either her clothes or ostomy system at work.  She feels that she would probably just go home if that ever happened.  Caroline had more narrow escapes with having to rush to the toilet with Crohn’s disease before her surgery.

     Billy-Ben Williams from Oregon works as a retail store manager, a position requiring regular physical lifting.  He said, “All the bending from unloading freight, stocking shelves, etc. used to loosen the seal on my pouch.  I had to check on it several times throughout the day.  On several cases, my pouch blew off.  I keep a backpack with me, and I can fix myself in under two minutes if it happens.  I discovered from talking to other people with ostomies that my problems were caused by using the wrong ostomy system for the activities I perform.  Since changing my entire system to one more compatible with my life style, I do not have any of the old problems with blow-off or leakage.”

     Clem Hopper—who has a transverse colostomy—shares that he typically needs to empty his pouch once during every workday.  He uses a closed-end pouch and often empties it late in the morning.  “The biggest challenge is that I work in an office building with multi-stall restrooms, so having someone else in the stall next to me is a real possibility.  I try to avoid lunch hour and the morning/afternoon break times.  In addition, I have never had a serious leak that made it to my outer clothing.  I have gotten a t-shirt stained a couple of times, but that is about it.  I have made a skin barrier change a few times to head off a potential leak situation.  However, that was when I was still a newbie.  That never happens to me anymore.”

     One important piece of advice we obtain from most experienced people regarding ostomy management is this . . . when making a system change, or just emptying your pouch, take that extra few seconds to do it perfectly.  Never rush.  Pay close attention to what you are doing.  Accidents usually happen during times when we are in a hurry.  Zippers can be caught on the pouch and tear a hole in it, the pouch can be yanked off when pulling up your pants or panty hose too quickly or the pouch clip can drop in the toilet.  Make a deliberate effort when managing your ostomy to completely eliminate mistakes.

     The UOAA General Discussion board at www.uoaa.org is a great resource when looking for specific advice about taking your ostomy to work with you—instead of leaving it at home.  You will find many people there willing to share what has and has not worked for them in all aspects of work.  This includes dealing with questioning co-workers, clothing choices, noise reduction tips and the like.  No question or concern is off-limits on this discussion board.  However, if you need medical advice, see you doctor or WOC nurse.  We can share our experiences, but we are not medical professionals.  Moreover, each of us talks from our own perspective, so read the responses with a grain of salt.

     With the advances in ostomy equipment over that past decade—gargantuan over the past 25 or 50 years—people with ostomies are involved in every imaginable occupation.  We have never heard of an occupation that people with ostomies are not doing.  This is a bold statement, but it has never been contradicted.  Whether firefighters, teachers, mechanics office workers, actors, retailers, athletes, body builders, belly dancers, etc. there are people with ostomies performing all kinds of work and enjoying fulfilling careers.

     A person with an ostomy was once asked when taking a trip, “Are you really going overseas with you ostomy?”  She replied, “Well, I cannot exactly leave it at home.”  Just as she successfully took her ostomy with her halfway around the world, you too can take your ostomy to work.  Be brave.  Be inventive.  Be flexible.  And most of all be grateful for the health you now have that allows you to take your ostomy to work. 

 

Think Like a Guest

By Joseph Rundle, Aurora, IL Ostomy Support Group

 

     As we prepare for the New Year, let us think about how we present ourselves to the new person with an ostomy visiting our group for the first time.  As someone with a new ostomy tries to navigate him/her through the isles of the hospital, is he/she confused or are we easy for them to find?

     Upon entering our meeting room, do they see a group of friendly members?  On the other hand, do they see a group talking to each other and too busy to stop and greet them?  Is our room friendly, cheerful, warm and welcoming, or is it just another meeting room that looks and sounds cold?  After the meeting, do we thank our new visitor for coming and ask him/her if he/she enjoyed him/herself?

     Cheerfully great that new visitor with an ostomy and direct them . . . no, take them to one our member who has a similar type of ostomy.  Please do not overlook the fact that a spouse may like to talk to another spouse of an ostomy patient.  Do not just leave the visitor with the other person.  Stay around for a little time until they all feel comfortable in the situation.

     These are just a few of all the things that we, as an ostomy support group, should look to see if we are performing to a level that exceeds expectations.  After all, we would like to see our first time visitor come back again and even become an active member of our group.  As we start 2007, let us all do our part to make sure every ostomy visitor feels welcome.  If we start correctly, we should be able to engage comfortably all our new ostomy visitors throughout the New Year.

 

Hotel Key Cards

Forwarded By Fred Shulak

 

     Southern California law enforcement professionals assigned to detect new threats to personal security issues recently discovered what type of information is embedded in the credit card type hotel room keys used throughout the industry.

     Although room keys differ from hotel to hotel, a key obtained from a well known hotel chain that was being used for a regional Identity Theft Presentation was found to contain the following the information:

1.      Customers name

2.      Customers partial home address

3.      Hotel room number

4.      Check in date and check out date

5.      Customer's credit card information

     When you turn them in to the front desk, your personal information is there for any employee to access by simply scanning the card in the hotel scanner.  An employee can take handfuls of cards home and using a scanning device, access the information onto a laptop computer and go shopping at your expense.

     Simply put, hotels do not erase the information on these cards until an employee re-issues the card to the next hotel guest.  At that time, the new guest's information is electronically "overwritten" on the card and the previous guest's information is erased in the overwriting process.  However, until the card is rewritten for the next guest, it usually is kept in a drawer at the front desk with your information on it.

     The bottom line is to keep the cards, take them home with you or destroy them.  Never leave them behind in the room or room wastebasket, and never turn them in to the front desk when you check out of a room.  They will not charge you for the card (it is illegal) and you will be sure you are not leaving a lot of valuable personal information on it that could be easily lifted off with any simple scanning device card reader.  For the same reason, if you arrive at the airport and discover you still have the card key in your pocket, do not toss it in an airport trash basket.  Take it home and destroy it by cutting it up, especially through the electronic information strip.  This information provided through the courtesy of the Pasadena Police Department.

 

Bladder Cancer Advocacy Network

 

     As we see the number of people with urostomies increase in our ostomy support groups, we also recognize that we sometimes lack all of the resources available for these folks.  In 2005, BCAN was organized.  BCAN is a national patient-based public awareness and educational activities organization for bladder cancer.  The website for BCAN is www.bcan.org or phone at 301-469-6865.