October 2004

 

Last Month's Meeting

 

     What a wonderful day to have our general meeting.  The weather was just about perfect as our usual interesting group of people attended.

     After our regular overview of the current events in the Chapter, Jay Hansen, Global Clinical Research from Hollister, Inc., worked with our Chapter to obtain our members’ input on a communication they are preparing to discover the needs of people with ostomies.  We encourage all manufacturers and suppliers to solicit our opinion on products or services that will impact those who have had ostomy surgery.   

     Bari Stiehr, CWOCN from Alexian Brothers Medical Center was our featured ostomy nurse for the evening.  Bari is a favorite of our Chapter, and she presented information on controlling ostomy odor.  She gave out information as well as samples of the new ADAPT Lubricating Deodorant, made especially for people with ostomies.  ADAPT does not only lubricate the pouch so the contents slid out easier, it can actually destroy odors—not just cover them up.  As you all know, an ostomy that is well pouched emits fewer offensive odors than a person who is intact.  Odor products are implemented by people with ostomies for special circumstances and to remedy unique problem areas.

     Our featured speaker for the evening was Maureen Moore, RN from Sterling Medical Services.  Maureen came with giveaways for our members, and she outlined some of the selection of the features and benefits available from Sterling Medical.  They are one of the many quality retailers that have recently implemented the full acceptance of Medicare assignments for ostomy supplies.  That means that you may order supplies from them without any co-payments.  (Note:  Our advertisers can provide this same service, but we always want you to have alternatives in suppliers as well as product manufacturers.)

     Hy-Tape International, the company that distributes “The Original Pink Tape”, sent us a carton of samples, which was given out free to our Chapter members at the meeting.  Hy-Tape is a latex-free, waterproof adhesive tape with a zinc oxide base designed to be soothing to delicate skin.  It is a popular accessory especially useful to people with ostomies that want an extra bit of security while swimming or are in circumstances where one absolutely cannot leak.  

     We’d like to thank David Fradin, Joan Loyd, Jane Michnik, Renard Narcaroti and Jerry Schinberg for bringing some special treats for our hospitality table.  The lucky winner of the 50/50 was Sue Connors; she now holds the distinction of being our luckiest member.  The consolation prize went to Ed Gelfand who is becoming a regular at our meetings.  Hope to see you again in October.

 

President’s Message:

 

     By now, you have probably received a notice from our national organization regarding the new membership billing procedure they are implementing December 2004.  I wanted to explain what this will mean to you and the Chapter.

     Currently, a member of our Chapter is also a member of national UOA.  This past year you have paid annual dues of $30.  Of that amount, $17.50 went to national, and $12.50 stayed with our Chapter—about $3,750 from approximately 300 members.  We use this money mainly for the postage and printing of The New Outlook, which is about $7,000 a year.  We spend little beyond this.

     National UOA has had to deal with every chapter’s different billing procedures to receive their share of the annual dues.  They have decided not to do this any longer and only collect their portion of your dues.  So the next time you renew, beginning in December, they will send you a bill only for the annual national UOA dues of $17.50, which you will be remitting directly to them.  Our Chapter will no longer have any part in this procedure.

     This leaves us with the problem of how to collect our portion of the dues from each member.  After much discussion by your board of directors as to how to implement this procedure, we have decided to trust our membership to help support our Chapter and its very beneficial programs.  For 2005, we will not be collecting dues from our members.  Chapter membership will be free!  

     We will count on you to help support our Chapter by your free-will contributions that have always been so generous.   This will be for a one-year trial period.  In 2006, we will check our budget to see if we can continue to be viable using this model.  If we do not get the monetary contributions that we need to operate our Chapter strictly by donations, then we may have to go back to collecting annual dues from each member.  Your board of directors knows how valuable our services and programs are to our fellow ostomates.  We are hoping that you will decide to help support your Chapter financially.  Of course, you always have been more than generous.    

     We will be inserting a donation envelope in The New Outlook a few times a year.  You may use them to mail us a donation.  Remember, this new billing procedure does not begin until December, so if you receive a dues renewal notice for this month, please pay that amount as usual.  More information will come next month, but if you have concerns, please do not hesitate to call me.

     Remember, even though this Chapter is run by all volunteers, we do have monthly expenses that need to be paid.  Please be as generous as you have been with your donations, so we can continue our support of helping people with ostomies live a better life.

    

                                                                                                                                                                                                                                                                        Jane Michnik

 

"Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting "...holy  s---! ...what a ride!"

 

Coming Events

October 16—The monthly meeting of the Lake County Ostomy Association at 10:00 a.m. at the Hollister Inc. headquarters will be held.  See article for details.

October 27—Barbara Gacki, CWOCN from St. Joseph Hospital will be featured for questions and answers related to ostomy surgery.  “Together we make the difference” ostomy survey.   

October 29—Gladbaggers Halloween Party at the home of Renard Narcaroti starting at about 7:00 p.m.  Information included in the attached article.   RSVP to Renard if you want to come.

December 15—Our Gala Holiday Party featuring special guests and our members provided, pot luck Dinner.  See article for details.

 

 

Calendar for 2004

General Meetings                                          Board Meetings

October 27                                                                        November 3

December 15*

 

* Special date.  The location of board meetings has been changed to the 10th floor east cafeteria.  Please call one of our officers to confirm a date, meeting location and agenda ... just in case.

 

 

Friends of Ostomates Worldwide

 

     This past August at the national convention, the FOW keynote speech was given by Joan Loyd.  We would like to share this with you, although hearing Joan present it in person was much more dramatic.

 

     UOA people love initials!  Two columns that take up nearly one-third of a page in our program book are dedicated to listing and explaining some of the initials used for this convention.  I’m going to talk about one that is not even listed!

     It confuses everybody:  FOW.  FOW-USA.  FOW-USA Project S.H.A.R.E.  FOW stands for Friends of Ostomates Worldwide.  We add USA because there is also FOW-Canada.  The UOA members who founded FOW loved initials so much they named their major project S.H.A.R.E.: Sending Help and Rehabilitation Everywhere.

     FOW was formed by members of UOA who saw the disaster that ostomy surgery causes people with ostomies and their families in countries where ostomy supplies may cost two-thirds of the family income.

     FOW has no formal connection to UOA.  It was formed and is maintained by UOA members.  UOA includes news from FOW in the OQ—don’t you just love all the initials, provides a link between our web sites, and at each convention, a booth in the exhibit hall and a room for the Annual Members Meeting of FOW.

     This year we have two very special speakers: Alexander Muchacho and Marta Velez D’Nieves. Alexander is the head of the Ostomy Association of Bolivia, think Ron Titlebaum of Bolivia.  He was our contact for the three pallets of supplies FOW sent to Brazil this spring.  Marta is a familiar face at our conventions.  Marta heads the Ostomy Association of Puerto Rico.  Alexander and Marta will tell us about life with an ostomy in their countries. 

     Alexander’s travel expenses and registration at this convention are a gift to FOW from Hollister, Inc.  Hollister has been and is a fantastic supporter of FOW.

     Mike Cherry arranged for Alexander’s trip here.  Mike organizes a group of Hollister employees who come every third Saturday to work at our warehouse.  They unpack, sort and repack for shipment the donations of supplies that pour in.

     Al Maslov has been our Board Advisor from Hollister for several years.  He arranged for the formatting and printing of our brochure.  He provides all the cartons FOW uses for shipping.

     Thank you, Mike and Al.  Thank you Hollister!

     FOW is a completely volunteer organization; there are no paid workers at all.  The funds we raise pay our warehouse, rent and shipping expenses.  Our Board members pay their own airfare, hotel and meal expenses while attending this annual members meeting, as well as our spring and fall Board meetings.

     Each year FOW-USA presents a service recognition award to a person or persons who have made outstanding contributions and rendered invaluable service to FOW.  The recipients of this award for the past three years comprise the selection committee.  This year the committee was Marilyn Zuckerman, Tennie Bee and Bob Hall, and me. 

     This year’s honoree is a person who is retiring from our Board of Directors after serving many years as member, Vice President and Membership Secretary.  For the past four years, he has kept up-to-date a membership list of 1200 to 1500 names.  He sends semi-annual billings and produces the labels for the mailing of our newsletter.  He sends “thank you” letters to everyone who sends a donation of money or of ostomy products.  And all this has been accomplished while living in a motor home, traveling all through the U.S. and Canada.  Efficient, thorough, unassuming Ival Secrest is our award recipient for 2004.  The plaque reads, "FOW-USA Service Award Presented to Ival Secrest in Recognition of Outstanding Contributions to Project S.H.A.R.E.  August 2004 Louisville, Kentucky."

 

The 2004 Chapter Holiday Party

 

     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 potluck dinner.  We’ve changed the date to Wednesday, December 15 instead of December 1, allowing us time to regain our appetites after Thanksgiving. 

     The festivities will take place in the 10th floor cafeteria at Lutheran General Hospital, our usual meeting place, at 7:00 p.m.  Please bring some food, homemade or otherwise, to share.  We need hors d’oeuvres—appetizers, main dishes, side dishes, salads and desserts.  Call Sally Schinberg at 847-364-0690, or email her at Sallyschinberg@aol.com, to let her know what you are bringing so we can ensure a balanced meal—having all desserts really would not be a good thing.

     Our featured musical entertainment during dinner and the accompanist for our traditional sing-a-long will be talented pianist Renard Narcaroti, who just happens to be a Chapter member.  All the new faces that joined the Chapter this year mean new voices too, although I still don’t think we’ll be much competition for the Mormon Tabernacle Choir.

     If you want to participate in the gift exchange—we don’t call it a “grab bag” as that conjures up other thoughts among ostomates—be sure you bring a gift to exchange.  The gift should be valued at $10 and preferably unisex.  And, if you’d like to assist with set-up for the party, we’ll be starting at 5:00 p.m., and we never turn down offers of help.

     So call Sally ... and remember to bring food, a gift and most of all, your Holiday Spirit!

 

 Gladbaggers

 

     We are having our fall Gladbaggers event on Friday, October 29 at about 7:00 p.m. at the home of Renard Narcaroti.  It will be an informal get-together to share stories of our new life after ostomy surgery.  Halloween costumes are encouraged.  We will be ordering refreshments at a cost of about $10 a person.  RSVP to Renard at 630-850-7125 if you are coming. 

     Directions are: 

 

·        Take I-294 to I-55 south

·        Take Route 83 exit south  

·        At the second light (91st St.) turn right (west)

·        Go to the first stop sign (Clarendon Hill Road) and turn right (north)

·        The second street on your left is Terry Trail (89th Place is on the east side) go to the fifth house on your right (north) 17W060 Terry Trail

                                            

Advertising Rates

1/8 page   $ 400 per yr.

1/4 page   $ 600 per yr.

3/8 page   $ 800 per yr.

These rates include an ad in all eleven issues of our Chapter newsletter, The New Outlook, plus an ad on our Internet site at www.uoachicago.org . 

 

News...Lake County Ostomy Assn.

 

     We would like to offer a special thank you to The New Outlook for including our information in their award winning publication.  Also, thank you for setting up our Internet site through www.uoachicago.org .

     L.C.O.A. had been an inactive chapter for several years.  In May 2004, a kick-off meeting was held at Hollister, Inc. to reorganize the chapter.  Our meeting was a huge success with over 50 in attendance.  For many, this was their first ostomy support group meeting.  L.C.O.A. is fortunate to have these new members with new ideas.  Plus, the meetings are at a new time and at a new place.

     You are welcome to join us on the third Saturday of each month from 10:00 a.m. until 12:00 noon in the cafeteria at Hollister Inc., Libertyville.  Our speaker for the October 16 meeting will be Pat Dillow, CWOCN from Victory Memorial Hospital, Waukegan.  The topic with be the care and maintenance of a stoma with questions and answers to follow.

 

President’s Meeting

 

     On Saturday, October 2, Jane Michnik, Marilyn Mau, Renard Narcaroti, Dave Rudzin and Fred Shulak joined leaders from other nearby chapters in a daylong meeting to discuss ways we may work together to advance our mission at UOA.  Hollister, Inc. graciously allowed us to use their facility for our meeting, and provided us with a continental breakfast and lunch.  Ginny Kasten moderated.       

 

A Bacteria May Cause Crohn’s

LONDON (Reuters), translated by The New Outlook

 

     A bacterium that causes intestinal illness in cattle and sheep could also be responsible for Crohn's disease.  Crohn's disease is an inflammation in the small intestine that affects about a million people worldwide. Scientists are not sure what causes it but they suspect it is due to a reaction by the body's immune system to a virus or bacterium.

     Dr Saleh Naser and researchers at the University of Central Florida in Orlando believe it is due to a bacterium called MAP, which is found in cattle, sheep and goats suffering from an illness called Para tuberculosis or Johne's disease.

     "We discovered the bacteria in the blood of Crohn's patients.  This is the first time anyone has done that," Naser said in an interview.

     "There is strong evidence that this bacterium may be responsible for Crohn's disease."

     Previous studies have concentrated on looking for MAP in the tissue of Crohn's patients and the outcome has been mixed, according to Naser.  MAP was found in the blood of patients with Crohn's disease but not in healthy people.

     "The blood is a sterile environment so the presence of these bacteria in the blood indicates this disease might be systemic, which means it may start in the intestine and ultimately it may infiltrate into other organs," he said.

     Abdominal pain, diarrhea, rectal bleeding, weight loss and fever are the most common symptoms of the illness.  Naser, who reported the finding in The Lancet Medical Journal, believes people can be exposed to the bacteria but they do not develop the illness unless they have a genetic susceptibility to it.

     In a commentary in the journal, Professor Warwick Selby of the Royal Prince Alfred Hospital in Newtown, Australia, said although the research may fall short of proving that MAP is one of the causes of the illness, it raises many important questions.

     "The findings now need to be replicated in other laboratories. Whatever one's view, MAP cannot continue to be ignored in Crohn's disease," he said.

 

Creation of a Stoma

By Joshua Katz, Dept of Colorectal Surgery Cleveland Clinic Florida

 

     The creation of a stoma—colostomy, ileostomy or urostomy—represents a major, immediate and sometimes permanent change in the life of a human being. This can have profound effects upon lifestyle, intimacy, employment, recreation and travel. Fear, misunderstanding, loss of self-image and social isolation can compound the situation.

     Colorectal surgeons and nurses who care for patients with a stoma must recognize that to save someone from a life threatening condition means little if the life the person returns to is made miserable by a poorly functioning stoma. The objective of any operation involving a stoma is to create a stoma that the patient can care for with simple routine using an appliance that fits reliably, comfortably and protects the surrounding skin.  Time between ostomy system changes should be at least once a day, and never longer then seven. There should be no leakage of feces around the appliance.

     Creation and utilization of a stoma is a team approach involving the patient, the ostomy nurse and the colorectal surgeon. Patients must assume responsibility for their own health and well-being. They need to learn about their disease and understand what operation is being performed and why. They need to know whether they have a colostomy or ileostomy, and whether it is permanent or temporary. An important rule to keep in mind is "when you do not know, ask".

     It is useful to keep a medical summary of one's medical and surgical history written down. So be sure to list current medications, physicians' names, addresses and telephone numbers. If a relative or friend has power of attorney or is a health proxy, or if there is a living will, this should also be recorded.

     One may also choose to obtain copies of operative notes and discharge summaries from recent or complex procedures and hospitalizations. This record is particularly critical when traveling or relocating. It is important to know that by law all information about a patient must be made available upon request of the patient. This means that at any time, you can request a copy of your medical record. In particular, patients planning a long journey—usually more than a week—or relocation, should notify their doctor, travel with a copy of their medical record, and prior to leaving seek and obtain the name and number of a physician at their destination

The ostomy nurse also plays a critical role in the preoperative and postoperative management. Prior to surgery—in elective or non-emergency cases—the surgeon and nurse sit down to review with the patient what procedure is being done and why. The patient then has his/her body examined while standing, sitting and lying down to determine the best place on the abdominal wall to locate the stoma. One or more sites are then marked so that surgeon knows where to place the stoma during the procedure. Principles of stoma location and creation include:

 

·        Keeping the stoma away from bony landmarks like ribs, hips scars and creases.

·        Making sure the patient can see the stoma.

·        Placing the stoma so it is not in the midline abdominal incision.

·        Keeping the stoma within the rectus muscle to prevent peristomal hernias.

·        Preventing stoma tension and assuring an adequate blood supply.

·        Budding the stoma so that it is inverted to permit proper pouch placement. This is particularly important for ileostomies so that the pouch can be placed right next to the stoma with no exposed underlying skin and thus prevents skin irritation, ulceration and breakdown.

 

An ostomy nurse can help patients adapt post-operatively to living with their stoma by assessing the quality of the ostomy system and its fit, and modifying the pouching method. Particularly in the several months following surgery, patients may gain or lose weight depending on their disease and may undergo several different pouching methods before developing regiment with which they are comfortable. The ostomy nurse can facilitate and direct the process. Patients with ostomies should consider a yearly visit with an ostomy nurse to reassess pouching methods and to assess for problems.

While these principles of preoperative assessment and operative management are considered standard of care by colorectal surgeons, there is as yet no data that prove the validity of these principles. Also, there are some patients with optimally constructed stomas who are miserable and some patients with extremely poorly constructed stomas who function well. For this reason, Cleveland Clinic Florida is conducting research to determine if the currently espoused methods actually impact upon quality of life and stoma function. We have developed a "stoma scoring system" and have used this to assess 70 patients in conjunction with validated quality of life estimates as well as appliance wear time and leak rate. Data are currently undergoing statistical analysis and the results will be published.

The Cleveland Clinic gratefully acknowledges the participation of UOA and its members and is always pleased to participate in UOA activities. We look forward to presentation our data formally to the UOA after peer review and publication.

Those seeking care, a second opinion or information from colorectal surgeons in the United States and Canada may contact:

American Board of Colorectal Surgery 734-282-9400 www.abcrs.org

American Society of Colorectal Surgery 847-290-9184, www.fascrs.org

Department of Colorectal Surgery Cleveland Clinic Florida

     954-659-5251, www.clevelandclinic.org/florida/depts/colorectal

 

Decision Time

 

     This one hits the nail right on the head:  Death of a Senator.  A powerful senator dies after a prolonged illness.  His soul arrives in heaven and is met by St. Peter at the entrance.

     "Welcome to heaven," says St.  Peter.  "Before you settle in, it seems there is a problem.  We seldom see a high official around these parts, you see, so we're not sure what to do with you."

     "No problem, just let me in," says the guy.

     "Well, I'd like to but I have orders from higher up.  What we'll do is have you spend one day in hell and one in heaven.  Then you can choose where to spend eternity."

     "Really, I've made up my mind.  I want to be in heaven," says the senator.

     "I'm sorry but we have our rules."

     And with that, St.  Peter escorts him to the elevator and he goes down, down, down to hell.  The doors open and he finds himself in the middle of a green golf course.  In the distance is a club and standing in front of it are all his friends and other politicians who had worked with him, everyone is very happy and in evening attire.  They run to greet him, hug him, and reminisce about the good times they had while getting rich at the expense of the people.  They play a friendly game of golf and then dine on lobster and caviar.

     Also present is the devil, who really is a very friendly guy who has a good time dancing and telling jokes.  They are having such a good time that before he realizes it, it is time to go.  Everyone gives him a big hug and waves while the elevator rises.

     The elevator goes up, up, up and the door reopens on heaven where St. Peter is waiting for him.  "Now it's time to visit heaven."

     So 24 hours pass with the head of state joining a group of deeply contented souls totally immersed in contemplation of the eternal oneness, which he observes but doesn’t participate.  He sees happiness he never knew could exist, but only as an observer.  He never participates in any of the joy of heaven, just observes.  Before he realizes it, the 24 hours have gone by and St. Peter returns.

     "Well then, you've spent a day in hell and another in heaven.  Now choose your eternity."

     He reflects for a minute, then the senator answers, "Well, I would never have said it, I mean heaven seems delightful, but I think I would be better off in hell."

     Immediately, St.  Peter escorts him to the elevator and he goes down, down, down to hell. Now the doors of the elevator open and he is in the middle of a barren land covered with waste and garbage.  He sees all his friends, dressed in rags, picking up puck-ridden trash and putting it in worm infested bags.  The devil comes over to him and lays his arm on his neck.  "I don't understand," stammers the senator.  "Yesterday I was here and there was a golf course and club and we ate lobster and caviar and danced and had a great time. Now there is only a horrible wasteland full of pain and my friends look so miserable.

     The devil looks at him, smiles and says, "Yesterday we were campaigning...Today you voted for us!"

Vote wisely on November 2nd!

 

     When I was six months pregnant with my third child, my three-year-old came into the room when I was just getting ready to get into the shower.  She said, "Mommy, you’re getting fat!"

     I replied, "Yes, honey, remember Mommy has a

baby growing in her tummy."

     "I know," she replied, but what's growing in your

butt?"

 

 Urostomy Hints and Ideas

Adapted from ReRoute, Evansville, IN

 

     The stoma will shrink in the first few months after surgery and should be re-measured as needed during that time.  The appliance opening should then be made smaller to fit the new smaller sized stoma.  You will find a measuring device and instructions in every box of pouches.  If you gain or lose weight, you may also need to recheck equipment fit.

     If you develop itching or a rash or become sensitive to your adhesive, talk to your doctor or ostomy nurse to help you clear up your skin irritation problem.  Individual body chemistry differs, so do manufacturer's formulas for skin barrier adhesives.

     If your adhesive is not giving you a good seal, ask for help in finding one that does.  A poor seal may let urine leak onto the skin.  If your pouch begins to leak, change it immediately.  Some people with urostomies have a high incidence of complications, some occurring after 10 to 12 years.  Most complications are gradual.  

     The most common, by far, is caused by an ill-fitting pouch.  Urine that accumulates on the skin around the base of the stoma may become reddish brown, with raised, thick, leather-like areas.  It is important to have a faceplate or pouch opening that fits up to the stoma to prevent this and other long-term complications.  The extended wear barriers made today are designed especially for people with urostomies actually to gently touch the stoma, turtleneck around it thus providing an excellent seal. 

     If the reddish brown growth is extremely bad, it may be treated with soaks of white vinegar three times a day for three or four days.  Vitamin C, taken according to the directions on the bottle, may also be helpful to acidify the urine.  Alkaline urine on the skin is irritating.  If these measures are not successful, a revision of the stoma is an alternative.

     Encrustation or sand-like deposits on or around the stoma are another complication. At each pouch change, check your stoma for color shape and function.  Watch for any stoma problems such as swelling, retraction, stenosis—narrowing of the outlet, prolapse—displacement of the stoma.  Any stomal complications should be reported to your ostomy nurse. 

 

Senior Link

 

     There is a web site available for seniors age 55 and over that can be used to check up on any benefits—federal or state—that may be available to them; it is called Benefits Check up, a free online service from the National Council on the Aging.

     Just go to http://www.benefitscheckup.org fill out a short questionnaire and obtain a report in a few minutes for those services that you may qualify. It may amaze you at the number of programs and benefits available.

 

Irrigations—To Do or Not to Do

By Susan Wolf, CWOCN

 

     Many people with a colostomy just do not like to irrigate.  They find the whole procedure disagreeable, time consuming and often not very successful; i.e., despite irrigation, they experience passage of stools one or more times a day.

     Irrigation does not work for everyone.  For one thing, your colostomy has to be in the descending or sigmoid colon.  A colostomy in the ascending or transverse colon will not be able to be controlled satisfactorily with irrigations because the stool is too watery.  One should never attempt to regulate an ileostomy with irrigation. 

     People who had a very unpredictable bowel schedule before surgery will probably continue to do so after surgery, despite efforts to achieve regulation with irrigations.  On the other hand, some people whose bowel habits were irregular before surgery find that irrigation helps them achieve regularity.  Some people have work schedules or lifestyles that do not permit them to irrigate at a consistent time each day.  This too can cause irrigation to be unsuccessful or inconsistent.

     You don’t have to irrigate your colostomy.  Your bowel will work anyway, irrigation or not.  The purpose of irrigating a colostomy is to achieve regulation of the bowel so that no stool is passed between irrigations.  The main reason for regulating the bowel is for the person with a colostomy to have an alternative in order to be more comfortable.  If irrigating is not accomplishing regulation and is in fact making your more uncomfortable, you should not be doing it.

     Why you were taught to irrigate in the hospital?  Some doctors use irrigations to stimulate the bowel into activity after surgery.  Some simply assume that a person with a colostomy would prefer it.  If you do not want to irrigate, check with your doctor to find out if there is a medical reason why you should irrigate.  If there is none—which is usually the case—the choice to irrigate or not is yours.

     You may prefer to irrigate but do not have success.  Before you give up, seek professional advice from an ostomy nurse.  You may call any one of the nurses listed on page two of The New Outlook or our Internet site at www.uoachicago.org and simply schedule an appointment.  You may have to modify your technique.  The experience and knowledge of a caring ostomy nurse will help you.

     Some successful pointers:

 

·        Hang the irrigating container about 18 inches above the shoulder height.  The bottom of the container should be about level with the top of the ear.  A bungee cord is a versatile and adjustable device for hanging the container when traveling.

·        Use only up to 1000 ml of tepid water.  A volume of 500-800 ml is typical—about a quart.  Remove any air bubbles that may be trapped in the delivery tubing.

·        Insert the lubricated come into the stoma very, very gently.  The cone does not have to be pushed in all of the way.   Just enough to create a snug fit so that no water leaks out around the cone.

·        If you use a catheter tip to irrigate, never ... never ... never insert more that 8 to 10 cm—3 to 4 inches—as there is a danger of perforating the bowel.  Press the plastic disc that comes with the catheter tubing against the stoma to prevent leakage.  In fact, unless your stoma is so tight or so small that only a catheter will fit, you might consider permanently switching to a cone.  A cone poses much less risk of perforating the bowel.

·        Instill the water over a period of 5 to 10 minutes.  Be patient.  If inflow doesn’t start or it is slow, try taking a few deep breathes or altering the angle of the cone.  Choose a rate that is comfortable to you and that does not cause cramping.  If cramping occurs, stop the flow, take a few deep breaths, wait until the cramping stops, and then resume the flow at a slower rate.

·        After instilling all the water, remove the cone from the stoma, close the top of the sleeve and wait for the returns.  After about 20 minutes, you can wipe off the end of the sleeve, fold it up or clamp it, and do whatever else you want to do for the next 40 minutes or so until the returns are complete.

·        Remove the sleeve, cleanse the skin and apply a pouch, cap, or gauze pad—whichever you like to use as a stoma cover.  A shower is usually the most effective means of cleaning up after irrigation.

 

Remember:  If you are not having success with your irrigations, see your ostomy nurse. 

 

Enteric-Coated Pills Question

UOA Discussion Board

 

Q  I had my ileostomy surgery in 1979 when I was 51 years old with very few problems these past 25 years.  But, I can't seem to communicate to my doctors in Florida that enteric-coated pills don't usually work with an ileostomy.  They are designed to work on someone with a complete colon.  Of course, I have no rectum or colon.  I inform them that after about six hours the medicine is in my pouch.  They do not seem to understand.  Any ideas?

 

A  Show them this information which was translated from the British National Formulary—the guide for British doctors on prescribing and considered a world authority.

1.8 Stoma care

     Prescribing medications for patients with a stoma calls for special care. The following is a brief account of some of the main points to be borne in mind:

Enteric-coated and modified-release preparations are unsuitable, particularly in patients with ileostomies, as there may not be sufficient release of the active ingredient.

Laxatives, enemas and washouts should not be prescribed for patients with ileostomies as they may cause rapid and severe dehydration.

Colostomy patients may suffer from constipation and whenever possible should be treated by increasing fluid intake or dietary fiber.  Bulk-forming drugs should be tried.  If they are insufficient, as small a dose as possible of sienna should be used.

Anti-diarrhea drugs such as loperimide, codeine phosphate, or co-phenotype (dioxalate with atropine) are effective.  Bulk-forming drugs may be tried but it is often difficult to adjust the dose appropriately.

Antibacterials should not be given for an episode of acute diarrhea.

Antacids have a tendency for diarrhea if made from magnesium salts.  Plus, constipation from aluminum salts may be increased in these patients.

Diuretics should be used with caution in patients with ileostomies as they may become excessively dehydrated and potassium depletion may easily occur.  It is usually advisable to use a potassium-sparing diuretic.

Digoxin used in patients with a stoma make them particularly susceptible to Hypokalemia, if on digoxin therapy and potassium supplements, a potassium-sparing diuretic may be advisable.

Potassium supplements in liquid formulations are preferred to modified-release formulations.

Analgesics such as opioid analgesics may cause troublesome constipation in colostomy patients. When a non-opioid analgesic is required, paracetamol is usually suitable but anti-inflammatory analgesics may cause gastric irritation and bleeding.

Iron preparations may cause loose stools and sore skin in these patients.  If this is troublesome and if iron is definitely indicated, an intramuscular iron preparation should be used. Modified-release preparations should be avoided for the reasons given above.

     Patients are usually given advice about the use of cleansing agents, protective creams, lotions, deodorants, or sealants while in the hospital, either by the surgeon or by an ostomy nurse. Voluntary organizations can offer help and support to patients with a stoma.

 

Dehydration with an Ileostomy

By Terry Gallagher, UK

 

     When we had our ileostomy surgery, our colon was removed.  In a normal person; i.e., a person with a full, working colon, the colon is responsible for absorbing much of the water we drink and that is contained in our food.  In addition, electrolytes such as sodium and potassium, essential to maintaining good health, are absorbed there.

     Removal or disconnection of the colon immediately causes an initial problem because of the removal of the ileo-cecal valve.  This valve is between the ileum or small intestine and the colon where the appendix is attached.  Its purpose is to dispense the contents of the ileum into the colon with a measured response to maximize food absorption. 

     When we lose this valve, food and water pass through our digestive system without a regulator, for a short time anyway.  The body does adjust quite well to our new plumbing, and soon our transit rate slows to a third or a quarter of that of people with normal colons to help make up for this loss.  The ileum begins to absorb more water to compensate for the loss of the colon but still absorbs much less than a normal colon usually would.

     Effluent from the ileum normally has about 30% of the original water taken into the body remaining, while normal stool from a colon has about 10% remaining ... quite a difference.  In addition, we lose ten times as much sodium and potassium as someone with a colon.  Because of all this, anything that upsets this balance in our bodies has a faster and more dramatic effect. 

     A typical example is gastroenteritis.  A normal person with this infection may be sick and have diarrhea for a couple of days, whereas we could end up in the hospital with exactly the same symptoms as these because of the loss of fluids and electrolytes.  This may apply to other problems that upset the digestive system’s balance.  When these occur, a normal person may experience nausea, vomiting, fever, abdominal cramps, bloating, bloody diarrhea and signs of dehydration—including the veins on the back of the hands and elsewhere becoming invisible.

     People with an ileostomy may experience these signs differently.  When I had flu, my ileostomy produced enough output to fill my pouch in just a short time.  I felt nauseous and developed abdominal discomfort.  I rapidly began to experience the symptoms of dehydration, which include a dry mouth, decreased or virtually non-existent urine output, heart irregularities and dry skin.

     In my case, I could see my urine output had ceased as I have a urostomy as well.  This is a medical emergency!  In less than a 15-minute trip to the hospital by ambulance, the driver remarked that I had visibly deteriorated during the trip, even with a saline IV being administered.  If hospitalized for dehydration, you may expect IV solutions to be given.  The fluid given will be saline, potassium, or potassium and glucose to replace those essential electrolytes lost through diarrhea.  Expect an EKG to check for heart problems, bloods to be taken, and stool and urine samples, to check for infection, and chest and abdominal X-rays.

     Dehydration is a serious medical emergency that can lead to shock, unconsciousness and death if not treated soon enough.  Delaying treatment can also lead to kidney damage, which may be permanent, requiring life long dialysis or a transplant.  If you become ill with diarrhea, have vomiting and fever that persist, find yourself with a pouch continuously filling with fluid, and have little or no urine output, seek emergency treatment immediately.

     Normal people may sneer that we’re making a lot of fuss for a simple “tummy bug” — we’re not! It is much more serious for us than for people with a normal colon. 

 

Some Basic Ostomy Hints

Via the Internet

 

·        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 be alive.

·        Build a support system of people to answer questions when you have a problem.  Consider our ostomy nurses and your officers who are listed in this newsletter.

·        Don’t play the dangerous game of making your appliance fail by putting off a change.  There aren’t any prizes given for the longest wear time except accidents.

·        Don’t wait until you see the bottom of your supply box before ordering more.  Always expect delays in shipping when calculating delivery times—although most suppliers can deliver ostomy supplies to you in a day or two.

·        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 odor 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, especially people with ileostomies.

·        Read and learn all you can about ostomies.  You will not only serve yourself, but you never know when you may find an opportunity to educate someone about the life-saving surgery that has extended so many of our lives.

·        Learn to be matter of fact about your ostomy surgery and never embarrassed.  Few folks get out of this life without some medical problems and unpleasant situations with which to cope. You may be amazed at how people will admire your adaptability and courage.

·        In the beginning after surgery, almost everyone experiences some depression.  If you fit into this category, you are certainly not alone.  But it need not be a lasting condition.  Try something as simple as walking…long walks with a friend.  If the depression seems to linger, don’t be afraid or ashamed to seek professional help. There is help out there!

·        The bottom line is...we are alive!  If we lived just a few years ago, or in another country, we might not be.  Medicine and techniques today 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.

 

Sex and the Ostomate

By Fred Shulak, Chicago’s North Suburban Chapter of UOA

 

     At a recent meeting of my ostomy chapter, we had a panel discussion. The meeting was very successful and at 9:30 p.m., we were still going strong.  Finally the moderator said, “One last question ... What about sex?”  Well, it was late and we were all tired and anxious to call it a night. Consequently, no one responded to the moderator.

     I’ve intended to put my thoughts in writing since that happened, but never did until now.  The fact of the matter is that having ostomy surgery doesn‘t end your desire for sex or make you less of a sexual being to other people.

     If you have a spouse, hopefully he/she will be glad that you are now a healthy person after having had surgery.  That ostomy appliance you now wear does not affect who you are now or who you were before surgery.  That appliance means that you are once again a healthy person, a person who is ready to lead a healthy life and a person who can love and be loved in return.  If you have an ostomy it is important that you practice good hygiene—just as you did before surgery.

     If you are unattached and are in the dating world, you will probably want to date someone until you decide whether or not you want to be intimate with him/her.  When you do tell him/her about your ostomy and if he/she is “turned off” by what they learn, then he/she probably is more interested using you as an object and not interested in the person that you are.  There are many people who are interested in meeting and getting involved with good people and you won't have to look long before you meet one of them.

     Having your body physically altered because of ostomy surgery does not mean that you cannot continue to enjoy sex.

 

My Stoma Changes So Much  

UOA Discussion Board

 

Q  I've had my stoma for a year and a half and my stoma protrudes between ¾” to flat with my stomach.  One day I can hardly see it sticking out and the next day it seems huge.  I talked with this to my doctors and they tell me it is peristalsis.  I am not so sure.  I know what peristalsis is—the wavelike motion the intestines have in order to propel the contents from the stomach to the outside.  Is it normal not to be able to see your stoma?  It shrinks down in so far there's almost nothing there, making it hard to put a barrier around so it doesn't leak.  Then at other times, it gets big and protrudes just fine.  What so you think?

 

A  I would be cautious about dismissing the physicians' reply so readily.  One can have a stoma situation secondary to peristalsis similar to what you describe—it is not all that unusual.  Without knowing the nature of your bowel motility and stoma location as it relates to your bowel anatomy, it would be difficult for me to say anything more certain than the general comment that peristalsis is quite variable among the general and ostomy population.

     This being said, let me try to explain why your stoma appears to disappear at times. Stomas are typically "fixed" in place after a period of time and the overall appearance and size do not change all that much once all the post op healing takes place—several months post surgery, on average.

     However, in some cases, a stoma can be uniquely influenced by peristaltic motions, and then it can become quite "mobile" in position, length and width, and give the appearance of disappearing at times.  When this occurs, it does challenge one's abilities to ensure a leak-proof seal at times.  Of course, if you are not having leaks or skin irritation then nothing further needs to be done from a pouching management perspective.  If, however, you were experiencing reduced wear time and/or skin irritation you may want to consider adding washers, pastes or strips, which are designed especially for this need, to help fill in the immediate peristomal skin zone, especially when the stoma is in its small or "disappearing" mode.

     Appreciate that you should size the barrier opening for the largest diameter of your stoma and allow these specially designed pieces—like an Eakin Seal or a Hollister Flextend Barrier Ring—to fill-in and protect the skin when the stoma narrows.

Hope this helps your understanding somewhat.

                                         Mike Orizio

 

The Final Word on Nutrition

 

     It's a relief to know the Truth after all those conflicting medical studies and misleading TV ads:
The Truth...

 

·        Japanese eat very little fat and suffer fewer heart attacks than Americans suffer.

·        Mexicans eat a lot of fat and suffer fewer heart attacks than Americans suffer.

·        Africans drink very little red wine and suffer fewer heart attacks than Americans suffer.

·        The French drink excessive amounts of red wine and suffer fewer heart attacks than Americans suffer. 

·        Germans drink a lot of beer, eat lots of sausages and fats, and yet still suffer fewer heart attacks than Americans suffer.

 

Conclusion:  Eat and drink what you like.  Speaking English is apparently what kills you.

 

Cheers to You

By Colleen Pierre, RD, ConvaTec’s Health & Vitality

 

     Whether your holiday drinks are as complex as wassail, warm as mulled wine, or crisp as a good cold beer, they are probably part of the traditional celebrations that have tied your family and friends together for generations.  So, it’s good to know that drinking moderate amounts of alcoholic beverages is okay when you have an ostomy.

     “Having a stoma doesn’t prevent you from drinking alcoholic beverages, “says Gwen Turnbull, CWOCN, “but if you are taking prescription medications, many do not mix with alcohol.  Check the label on the bottle or speak with you healthcare provider or pharmacist.”

     That being said, your personal tolerance for alcohol may have changed since your ostomy.  “Alcohol hits me faster now,” says Herb Siegal, a member of Chicago’s North Suburban Chapter of UOA.  Herb had a proctocolectomy with an ileostomy for ulcerative colitis in 1998.  “People with an ileostomy might find that it doesn’t take as much to get intoxicated,” confirms Turnbull, “But it is a very individual thing.”

     If you do imbibe this holiday season, keep in mind that alcohol—and caffeine—are dehydrating.  So you will want to drink plenty of water, maybe some cranberry juice, nonalcoholic beer and wine, and some other fun stuff to drink in addition, or to serve to the kids, pregnant women, or those who choose not to drink alcohol.

 

Holiday Drink Tips

 

·        Do you have lactose intolerance?  Avoid milk drinks like eggnog, or take Lactaid®.

·        Carbonated beverages can cause gas, so have only small amounts if this bothers you. 

·        To sleep better, limit evening fluids.

·        Drink 8 to 10, 12-ounce glasses of water a day.  Also have some cranberry instead of orange juice; it may help make your urine acidic.

·        Drink extra water every day to counter the dehydrating effects of alcohol and caffeine.

·        Limit alcohol to one drink a day for women, two a day for men.

 

Incidentally

 By Marjorie Kaufman, via ReRoute, Evansville, IN

 

     No one can tell at a glance that I have an ostomy.  Only those close to me know it for sure.  Perhaps that is why it is difficult for me to recognize a curious fact:  Some people do not realize it’s a blessing and not a doom! 

     One wonders whether this knowledge might have some value to the human race—at least that part of the human race that tends to look upon an ostomy as a disaster.  Acceptance is part of being happy.  People need happiness as much as they need food; without this, they are devoured by restlessness and discontent.

     How many people who think they resent an ostomy would, if they were truthful, recognize it as the thing they most needed to enjoy life again?  How many could, with a simple change in mental outlook, admit it is a blessing?  Many people never learn they never achieve the peace of mind and contentment this knowledge brings.  They spend their lives in a prison where an ostomy is the eternal punishment.

     An ostomy is not doom—–that is a negative mental attitude that is not based on reality.  Most things are not really a joy or a burden if you think about it; only your attitude about a thing tends to make it a positive or a negative influence in your life.  How can we avoid that feeling of compulsion that makes an ostomy a burden?  We don’t disclaim it.  There’s no use kidding ourselves about that.

     Nevertheless, there are things we can do to take the edge off the feeling of compulsion and make things more pleasant.  We need to expend our mental and physical energies.  If these energies are not utilized in a constructive fashion, they turn inward and poison our minds, and therefore our bodies, with resentment and dissatisfaction.  We need that warm sense of accomplishment, to be needed, wanted and useful.  We need it to give balance to our lives.  Contentment depends not so much on the blessings we have received—for we all have our special gifts—as on the attitude that we take towards our life—the challenges included.

 

People with Ileostomies

via ReRoute, Evansville, IN

 

     Can an ileostomy be controlled with strict diet or irrigation?  The answer is a definite “no” to both questions.

     Occasionally, a doctor may irrigate an ileostomy with a lavage set for food obstruction.  This procedure should be done only by an experienced doctor or ostomy nurse to prevent perforation of the small bowel and further surgery.  An ileostomy cannot be controlled by any diet.  It is vitally important, that everyone with an ostomy eat at least three nutritionally balanced, but small, meals a day.

     If your doctor has given you a special diet, remember that when your stomach is void of food, it will fill up with gas.  Excess gases result in a noisy ileostomy.  

     Fasting may increase the activity of the small bowel, causing the ileostomy to discharge very liquid feces.  Diet is an individual matter.  Some people can eat all varieties of food, including foods with skins, without affecting the consistency of the stool or the activity of the bowel.  Others find that any violation of a low residue diet leads to frequent and watery stomal activity.  Each person must discover his/her own dietary pattern through trial and error.  Another word to people with an ileostomy ... If you are ever depressed about your surgery, just think of all the ailments you no longer have to worry about: rectal cancer; colon cancer; hemorrhoids; diverticulitis; appendicitis; constipation.  Sometimes, it’s amazing that anyone can survive with the colon intact!

 

New Crohn’s Disease Study

Contributed By Jane Michnik

 

     A U.S. survey conducted by Voices of Crohn's finds those who suffer from Crohn's Disease underestimate the effect of the disease on their daily lives.  The survey finds of the 500,000 people in the Unites States who have Crohn's Disease, 60 percent between the ages of 18-34 were hospitalized within the past two years and more than half-required surgery within the past five years.  One in five respondents ages 18-27 reported Crohn's affects their relationships with employers, friends, family members and the general public.  It limited their desire to date and their confidence to pursue higher education. More than 93 percent of respondents reported the disease impacts their overall emotional well-being.