April 2007

 

Last Month’s Meeting

 

     A special friend of ours, Bret Cromer, President of the DuPage Ostomy Association gave a wonderful and moving presentation on the Youth Rally.  Bret dramatized the enormous benefits the campers receive as well as those, like him, that volunteer to be counselors for the five days of this annual event.   

     Of course, none of us are between 11 to 17 so we would not go to the camp, however, the story of Youth Rally enhanced the feeling of gratitude we possess at being fortunate enough to wear an ostomy ourselves.  We have the opportunity to see, meet and talk to people with ostomies ever month at our general meeting.  The children going to the Youth Rally for the first time have often never seen another young person like themselves who has suffered from a medical condition that requires an ostomy.  This may be their only opportunity to network with other children so they do not feel so alone. 

     The camp has multiple goals of ostomy and health education; the positive reinforcement of the self-image of the campers, as well as having some fun.  Most of the children develop a special affection for the people at the Youth Rally and look forward to every year’s event.  Graduates, those over 17, many times return as counselors.  Youth Rally people are fiercely dedicated to the organization because of the benefits they see firsthand the camp has on these young people.     

     Along with Bret, Heather Boudrick, a WOCN from Hollister, Inc. and an active participant at the Youth Rally explained how volunteer nurses like her check the ostomy and pouching system of each camper.  (We were fortunate to have an entire contingency from Hollister, Inc. come with Heather to demonstrate their support of our ostomy association and the work performed at the Youth Rally.)  They make sure every child is wearing the best ostomy system for his/her needs and that he/she is educated on correct ostomy management techniques.  Our ostomy association is a regular contributor to the Youth Rally in part by funding an annual scholarship for some fortunate young person.         

     Marilyn Mau, former UOA President, OAGC President and a key person in the first Youth Rally, was the lucky winner of our 50/50 and Marge, who we hope to see again, won the consolation prize.  We would like to thank Rhoda Gordon, Renard Narcaroti, Ken Niebuhr and Sally Schinberg for bringing treats to our Hospitality Table.  We also would like especially to thank Ken Niebuhr for accepting to manage our publicity committee.  Ken is very highly qualified and we are fortunate to have someone with his talents on our team.  

     As a side note, I would like to thank everyone who remembered my birthday, albeit a month early.  It meant so much to me . . . Renard

     Do not forget to come to our Anniversary Meeting in April when one of our favorite speakers, Jan Colwell will be our featured.

 

Remember:  You can currently park in the attached parking structure for about $4.00 and come to our meeting by taking just a few steps more.  Valet parking and wheelchairs are also available.

 

Coming Events

 

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.  Jan will talk about pouching system wear time along with a current scientific study now being conducted on this topic.

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 featuring Tina Nardi from Byram Healthcare  

July 25—We are honored to have Madeline 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.

August 22—Discussions on the successes of the UOAA Conference held in Chicago the week before. 

September 26—Our “Welcome to Fall” meeting featuring a favorite of our Association, Connie Kelly, WOC nurse from Northwestern University.

October 24—Gail Meyer and Kathy Krenz, WOC nurses from Centegra-Northern Illinois Medical will come to talk us about convexity with ostomy skin barriers.  Gail had an exciting presentation last year, and we look forward to the addition of Kathy this year.  

 

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

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.  Programs are offered at no charge.  The Cancer Wellness Center is located at 215 Revere Drive in Northbrook.  One program offered is:

Spring Restorative Retreat

Saturday, April 28, 1:00 PM

 Kathryn Heekin, Ph.D. & Deborah Kronenberger

Please join us for our second retreat.  This season we will quietly rejoice and reflect new beginnings and new growth.  RSVP 847-509-9595.

 

The Story of a Shipment

By Joan Loyd

 

     The painstakingly slow process usually begins with an e-mail asking for a donation of ostomy products from a new or former recipient organization.  We request that the receiving organization communicate with us by e-mail in English, if possible, until a shipment arrives.  Each recipient sends an address where to ship the products and the name of the person responsible for receiving it. 

     We screen organizations to assure their authenticity and that the request is legitimate.  We evaluate answers to e-mailed questions regarding their operation and distribution of ostomy supplies.  We require that the supplies we donate in turn will be donated to the people in need, without any “strings attached”. 

     We contact the International Ostomy Association and ask for demographic information on the requesting organization, i.e., how many people with ostomies they serve, what is the proportion of colostomy/ileostomy/urostomies, stoma size ranges etc.  We can then plan a shipment of products tailored to their specific needs. 

     We begin to select and pack boxes of ostomy and/or medical supplies and arrange them on pallets.  A loyal volunteer, board secretary and local member, Sheryl Crook, collects the shipping data and arranges it into a manageable Excel invoice.  The invoice is sent to our shipping agent, who begins arranging customs clearance and transportation.  Usually we must re-do our documents to comply with the customs regulations of the destination country. 

     When the paperwork is in order, the pallets are wrapped in a plastic wrap and scheduled for pick-up.  Shipments usually are pick-up by truck and then go by sea to the destination country.  A truck will pick-up from the ship and deliver the precious goods.  Our biggest issue is moving our shipment through customs departments at the other end.  This sometimes delays the shipment to our consignee.  At last, the organization receiving the donation, a hospital, clinic or medical mission, obtains the most valuable shipment—$25-50,000 at retail—and  manages the distribution of ostomy supplies to their people in desperate need . . . free of any charges. 

     We received a request from Bolivia in December—a country we have shipped to before.  We packed and shipped two pallets of supplies to them that arrived in March.  When we heard by e-mail that it was received and being distributed, our job is complete.  They usually send us pictures—we usually send them an instant camera with the shipment—and stories of the people getting ostomy supplies.  All of you who donate your time, talent as well as products and finances make this possible.  Thank you on behalf of the many people you help.        

 

Mario Pardo 1933 - 2007

By Joan Loyd

 

     On Wednesday, March 21 our support group, FOW-USA and the world lost an important person.  Mario was important because he cared deeply for others and spent his life making our world a better place.

     In early 1990's Mario and Sharon, married 39 years on March 16 of this year, were responsible for mailing our newsletter.  Mario picked up the copies at the printer.  Mario and Sharon folded, stamped, labeled and sorted by zip code over 500 copies.  Then Mario took them to the post office.  They did this every month for about five years.  When they gave up this chore as Sharon’s health declined, it became a budget item—increasing the cost of each newsletter, we send.

    Though not a person with an ostomy, Mario was a loyal member of FOW-USA.  When he retired as a warehouse manager in 2003, he immediately became a volunteer at the FOW-USA warehouse in Glenview.  His knowledge, experience and expertise as a manager grew the FOW-USA operation from an amateur charity to a professional shipping facility.  He guided FOW-USA though and challenges and necessary changes as overseas shipping regulations became increasingly complex.

     As treasurer of FOW-USA, Mario kept accurate records.  He successfully challenged errors and stretched our budget to cover increasing costs for space and shipping.  All this was done selflessly and with good humor.  The Velveteen Rabbit, a children’s story written by Margery Williams, is a fitting allegory of Mario’s life.

     Sharon has pictures of Mario as a handsome young twenty-year old in his Air Force uniform.  By the time Mario joined OAGC and FOW-USA he was older, wiser and not as handsome but that did not matter.  Mario was loved and Mario was real.  The story is about a velveteen rabbit coming to live in the nursery as a gift for a little boy.

     “The Velveteen Rabbit was shy, made of velveteen and stuffed with sawdust; and some of the expensive toys in the nursery made fun of him.  The mechanical toys, like the model train, were very stuck-up and boasted they were real.  Even Timothy, the jointed wooden lion, who was made by disabled soldiers and should have had broader views, put on airs.”

     “The only one kind to him was the old skin rocking horse who had lived longer in the nursery than anyone else.  He was so old that his brown coat was bald in patches and most of the hairs in his tail had been pulled out.  He was wise, for he had seen successions of mechanical toys arrive to boast and swagger, then by-and-by break their springs and pass away.”

     “‘What is real?’ asked the rabbit.  ‘Does it mean having things that buzz inside you and a stick-out handle?’  ‘Real isn’t how you are made’, answered the skin horse.  ‘It’s a thing that happens to you.  When you are loved for a very long time, not just to play with but really loved, then you become real.’”

     “‘Does it hurt?’  ‘Sometimes’, said the skin horse, ‘but when you are real, you don’t mind being hurt.’  ‘Does it happen all at once like being wound up, or bit by bit?’  ‘It doesn’t happen all at once.  You . . . become.  It takes a long time.  It doesn’t happen to people who break easily, or who have sharp edges, or who have to be carefully kept.  Generally, by the time you are real, most of your hair has been loved off, sometimes your eyes drop out and you get all loose in the joints and very shabby.  But these things don’t matter at all, because once you are real, you can’t be ugly, except to people who don’t understand.’”

     “Time passed in the nursery.  The little rabbit became the favorite toy of the little boy.  He slept in the boy’s bed.  They spent long days outside, riding on the wheelbarrow, playing in the grass.  The little rabbit grew very old and shabby, but the little boy loved him just as much.  He loved him so hard that he loved all his whiskers off, and the pink lining to his ears turned grey.  He even began to lose his shape.  He scarcely looked like a rabbit any more, except to the boy.  To the boy he was always beautiful.  Nursery magic had made him real, and when you are real, shabbiness doesn’t matter.”

     “And then one day the boy fell ill.  His body was so hot that it burned little rabbit when he held him close.  Strange people came and went in the nursery, and a light burned all night.  Through it all, the little Velveteen Rabbit sat guard.  It was a long weary time, but he knew the boy needed him.  While the boy lay half asleep, the little rabbit crept up close to the pillow and whispered all sorts of delightful plans for when the boy would be well again.  They would go out in the garden and play splendid games among the flowers and butterflies.”

     “At last the fever broke, and the boy got better.  Then the room had to be disinfected.  All the books and toys the boy had played with in his sick bed must be burnt.  And so the little rabbit was put into a sack and carried out to the end of the garden.  While the little rabbit lay among the old picture books, he remembered the long sunlit hours in the garden and how happy they were.  He felt very lonely and sad, and a tear . . . a real tear trickled down and fell to the ground.”

     “Then a wonderful thing happened.  Where the tear had fallen grew a mysterious flower.  It was so beautiful the little rabbit forgot to cry and just sat there watching it.  Suddenly the blossom opened, and out stepped the loveliest fairy in the whole world.  She came close to the little rabbit.  I am the nursery magic fairy.  I take care of all the playthings children have loved.  When they are old and worn out and the children don’t need them anymore, then I come and take them away and turn them into real.”

     “‘Wasn’t I real before?’  ‘You were real to the boy because he loved you.  Now you shall be real to everyone.’  She gathered him up in her arms and flew with him into a beautiful forest.  In an open glade between the trees, wild rabbits danced on the grass.  When they saw the fairy, they stopped dancing and stood in a ring to stare at her.”

     “‘I’ve brought you a new playfellow.  You must be very kind to him and teach him all he needs to know, for he is going to live with you for ever and ever.’  The fairy kissed the little rabbit, and suddenly instead of dingy velveteen, he had brown fur, soft and shiny.  His ears twitched by themselves, and his whiskers were so long they brushed the grass.  Instead of sawdust, he had legs that could spring, and leap and jump!  She kissed him again and said, ‘Run and play, little rabbit!  Run and play!’”

 

UOA-C at CCFA Symposium—2007

By Renard Narcaroti

 

     For the eighth year in a row, we have participated in the CCFA Educational Symposium held here in Chicago (Marilyn Mau as well as Dave Rudzin arranged and managed our initial participation in this event.)  We are invited to set up an educational booth where the people attending the symposium may stop by and talk to us about ostomy surgery.  This was CCFA’s best-attended conference with over 1000 people registering.

     Our active participation was managed through the efforts of:  Vera Miller, who after suffering with uc, is our best example and an outstanding role model of a person with a successful j-pouch:  Judy Svoboda, with has an ileostomy due to Crohn’s disease—who dresses impeccably wearing spandex type pants, which shows off her flat tummy.  We notice people stealthily looking at her trying to see her ostomy—which is virtually impossible to notice.  Judy introduces herself as a person with an ostomy right away or else nobody would believe it: and, of course, myself.

     I think it would serve us well if I let you know of some of the stories people relayed to us while working there.  As a preamble, Judy reminded us that although we are smiling, happy and healthy, people there observing our attitude do not know how to take us.  You see, they are usually very sick, scared to death about the possibility of having to live with an ostomy, yet, here we are excited about life.  They think, “How can they be so cavalier about on ostomy, when I am so scared about it?  Don’t they know how serious this is for me?”

     Of course, we know how serious it is.  However, we have the advantage of seeing past the fear of what it is like to live with an ostomy because we know firsthand that will we actually be able to leave our house . . ..  This ostomy business is old news to us, we have too many other interesting things that we are involved with in our lives but they are just beginning the journey.  They just do not realize the great opportunity from the pain of disease ostomy surgery will provide them.  We are there to help communicate the potential future it is possible for many of them to possess.

     Not all the stories are so good.  One woman, in her late 50’s, near death in 2001 due to uc, was told by her doctors that she needed to have her colon removed.  Her husband told her that if she had an ileostomy that he would stop having sex with her.  She chose the j-pouch surgery as her alternative.

     However, the surgery produced some serious side effects, like is usually does.  Besides the customary issues, like pouchitis, butt burn, etc., she had constant pressure on her anus.  This caused her pain continuously for five years.  Her husband died last year and soon afterwards, she had her j-pouch excised.  She is very happy with her new ileostomy—translated no pain—and she controls her own body now.

     Another young woman, who by the way was beautiful enough to be a movie star, came by asking us about some ostomy issues.  She had a temporary ileostomy, due to uc, that she was keeping, while she and her husband tried to have a baby.  Her doctor told her that a baby is easier to conceive and deliver with an ileostomy than a j-pouch.  However, she questioned Vera quite intensely on her quality-of-life with a j-pouch.  She will have to ultimately decide whether to have her remaining colon and anal parts removed and make the ileostomy permanent or to convert her temporary ileostomy into a j-pouch.  She has a few years yet to decide.  We presented a case viewing both sides of the issue.

     One woman, who stopped by with her son who is in his early 20’s and is being ravaged by uc, told us how terrified they are of colon surgery.  They were desperately seeking the least visible evidence of colon surgery.  They were sure the alternative surgical procedures would make him “normal” once again.  We explained the benefits and downsides of a j-pouch, Kock pouch and ileostomy.  Judy and Vera explained their feelings so positively and compassionately that the young man was not as panicked about having ostomy surgery. 

     Another lovely young woman in her 20’s, who had a j-pouch due to uc in 2000, stopped by to talk to us about her surgery.  Although she was happy to be rid of the uc and had a good life, she was concerned that she would have to continue her entire life living on anti-diarrhea drugs as well as a whole plethora of antibiotics, while still going to the toilet about 20 times a day.  Vera, who was a popular speaker this day, gave her some tidbits on improving her life.  This young woman also came to realize that maybe she still has other alternatives if carrying a j-pouch proves too costly in terms of quality-of-life.

     Another young woman, Sabrina, was very enthusiastic about all the interesting things she has done since obtaining her ileostomy due to uc.  She told us how she swims all the time and the type of bathing suits she wears to hide the ostomy; like wearing suits with printed patterns, the new two-piece suits where the top overhangs the bottom by just a touch and the fashionable body wraps that the young girls all wear.  She also scuba dives.  She said being in water 60 feet deep is a pleasure with an ileostomy; i.e., no worries about having to make an emergency toilet visit. 

     Dozens and dozens of people came to us showing off that they have had ostomy surgery and felt better than ever.  (Studies have shown that people with ileostomies due to inflammatory bowel disease have better quality-of-lives than regular, healthy people do in the general population!)  Many who come to the symposium, live in areas over an hour away from the nearest local ostomy association.  They seem to look forward to seeing us each year as a way to keep in contact with the ostomy community. 

     We were able to experience first-hand the benefits people receive from our local ostomy association.  In addition, we leave with the gratitude of having all that pain and suffering behind us.  We are grateful for our new life after ostomy surgery.  We hope you are too.

 

“Spring Into Exercise” Carefully

Adapted By The New Outlook

 

     Spring is the time in Chicago when we love to go outside and be more active.  However, when you do return to a more active lifestyle, increase your activities slowly and gradually.  This will help you to prevent injury, especially if you have not been exercising regularly during the winter.

     People with ostomies should start out at very basic activity level.  Increase your exercise only gradually.  For instance, if you took walks in the spring and summer last year of about three miles a day, start off this season at one mile, and then increase a little each day.  In addition, you may find that you cannot perform at the same level that you did last year.  Just take it slow at a level in which you feel comfortable.  Never strain yourself.

     A good place to start is with a visit to your doctor, especially if your exercise program was non-existent during the winter.  He/she will check your health and work with you on the best exercise regimen. 

     Before any type of exercise, slowly . . . warm up and stretch.  This means let your body adjust with some easy, low-stress movements.  Move into some basic stretches before doing your main exercises.  End your exercise session gradually and end with more stretches.

     Stretching helps to prevent injuries and enables your muscles to perform better.  A strained back, pulled muscles or tendonitis may be avoided by careful stretching or warming-up.  When you stretch, hold the stretch for at least 10 seconds.  This helps avoid “bouncing” which tears muscles and tendons.  Holding a stretch allows the muscles the time they require to overcome natural tension.  Bouncing pushes the body too fast and makes muscles tend to guard themselves against that movement. 

     Stretch as far as you can comfortably and then hold that stretch.  If there is pain, you are going too far.  Experiment on the positions best for you. 

     Your do not have to be an Olympian to reap the benefits of exercise.  It is never too late to start getting in shape.  We tend to lose about one-third of a pound of muscle per year after the age of 30, and our bones become weaker—if not subjected to weight-bearing exercise.  So, in addition to aerobic exercises such as walking or swimming, doctors recommend people—especially seniors—to do some degree of strength training. 

     If your body is in pain two hours after exercising, back off a bit.  You may experience some minor soreness later in the day or in the next day or two—this is normal.  You should not have intense soreness or pain at anytime, especially shortly after doing the exercises.  If any exercise causes you pain, try doing it more gradually or do not do it at all.  Also, you should never increase your rate of exercise by more than 10 percent a week. 

 

Facts about Convexity

By Bob Baumel

 

     A convex pouching system is designed to improve the peristomal seal by increasing the depth of the skin barrier.  This is done in order for the ostomy system to conform to the peristomal skin contour more continuously.  The following are indications for use:

Æ     A flush stoma

Æ     A retracted stoma

Æ     A stomal at or near skin level

Æ     Peristomal creases and wrinkles

Æ     Liquid drainage getting on the skin

Æ     A high output stomal effluent

Æ     A protruding or flabby abdomen

Æ     Frequent pouching system changes caused by leakage

 

The following are contraindications for use:

Æ     Pyoderma Gangrenosum, a chronic non-infective eruption of spreading undermined ulcers showing central healing, with diffuse dermal neutrophil infiltration; often associated with ulcerative colitis

Æ     Caput Medusa (peristomal varices), varicose veins radiating from the umbilicus, dilated ciliary arteries girdling the corneoscleral limbus in rubeosis iridis

Æ     Pressure ulcers, a lesion on the surface of the skin caused by superficial loss of tissue, usually with inflammation, which  may be cause by an ostomy belt or convex insert putting stress on the skin causing ulceration

Æ     Mucocutaneous separation, relating to mucous membrane and skin; denoting the line of junction of the two at the orifice . . . in our case the separation of the skin from the stoma

Æ     Crohn's ulceration, ulceration caused from Crohn's disease

Æ     Malignant ulceration, ulceration caused from cancer

 

Products and devices to achieve convexity include:

Æ     Convex Insert:  A pre-sized plastic ring for use in the flange of a two-piece system

Æ     Barrier Rings or Strips:  A moldable product used to create convexity.

Æ     A Convex Skin Barrier:  A skin barrier manufactured with built-in convexity             

It should be noted that an ostomy belt is usually worn to provide additional support when using any convex product.  There are also differing degrees of depth available in convex products such as, shallow, normal and deep.

    

The person who has a need for a convex product should be able to maintain his/her peristomal skin in excellent health; comfort and satisfaction with the pouching system; increased pouching system wear time; a more cost effective stomal management system.  There are certain considerations when using a convex system:

Æ     Convex pouching systems are best fitted by a WOC nurse and evaluated regularly

Æ     Convex products leave an imprint on the skin

Æ     Convex barriers may be less flexible

Æ     Convex products generally cost more, but should be a better value because of the increase wear time leading to less frequent pouch changes

 

Patients are encouraged to see their WOC nurse if there are any stomal changes, bumps, cuts bruises or bleeding; if peristomal skin changes occur such as irritations, rash, color changes, bleeding, pain, itching or lesions; if there is continued and frequent leakage of the pouching system.

 

Ileostomy Lavage

By: Dianne Garde

 

        When someone with an ileostomy encounters a blockage, it is important to know how this should be treated.  The term “Lavage” is used rather than irrigation.  In the ostomy realm, the term irrigation generally refers to someone with a colostomy who gives themselves an enema on a daily basis to clear the colon of stool.  The amount of water used is probably between one and one half liters.  Trying to instill this amount of fluid into an obstructed ileostomy could be potentially dangerous as the pressure could cause a perforation.

     The generally accepted method of treatment of ileostomy obstruction is to use saline (sodium chloride) to prevent dehydration and to utilize a bulb syringe with an open-ended whistle tip, 24Fr or 26Fr, catheter.  The solution is sucked into the bulb syringe and gently instilled into the catheter and the contents sucked back into it again in an effort to break up a food bolus.

     This should be done a number of times until the saline comes back clear.  I would not recommend that a patient try this procedure unless he/she possesses the proper equipment and has been trained by a well- educated WOC nurse.  This should not be attempted until an x-ray has been taken to determine that it is a food bolus and not a mechanical obstruction.

     I would also recommend that if you feel you have an ileostomy blockage that you try to get to a major centre where there are qualified personnel familiar with the proper procedure to deal with the problem appropriately.  About the author: Dianne Garde is a certified ostomy nurse that may be reached at wcet@on.aibn.com.

 

Living with Your Ileostomy

By Lawrence P. Davis, M.D.

 

     This article is from a talk about, The Surgeon's Responsibility to You and Your Responsibility to the Surgeon.  The talk was on what a physician expects of an ileostomy patient.

     "Being a person with an ileostomy myself, I have jotted down things I experienced, and what I expect of you as you learn to cope."

     Immediate post-op care . . . the most important thing the doctor expects is the patient's acceptance of the change in body image.  He/she must accept the fact that he/she has been changed for the better in most cases.  One of the biggest hurdles with patients who will not even look at the stoma is to have him/her take care of it.  This is the beginning of the road to recovery and complete recuperation.  The patient should and must be independent by the time he/she leaves the hospital.  The patient should have a satisfactory ostomy system with resource available for follow up care.

     Motivate the patient to look at the positive effects of his/her operation.  He/she is free of the disease; of contracting colon cancer; urgent diarrhea; cramping and pain.  Most people with an ileostomy say they happy to be rid of 20 or more trips to the bathroom, while sometimes getting there too late.  Most ileostomy surgery is due to inflammatory bowel disease.  Make him/her aware that he/she has not been mutilated, but changed for the better.

     The next big challenge is "bagging the stoma."  It is most important to find the best ostomy system for the patient.  The patient needs to know that his/her stoma is going to change.  After surgery, he/she will gain weight again resulting in additional adjustments to one's pouching system.  The WOC nurse should be the primary resource for patient consultation.  A WOC nurse is an expert on post surgical ostomy care and should be fully utilized.

     It is very important to understand the challenges a surgeon faces.  Keep in mind that the individual's health problems dictate the surgeon's techniques.  Depending on the exact anatomy of each patient, he/she will have a different stoma located in a slightly or more dramatically different area on the abdomen than someone else.  One does not swap dentures or eyeglasses, therefore one should not unfairly compare stomas.  Patients should attend meetings at their local ostomy association; learn all he/she can about ostomy care.  The caring and sharing will help more than anything else will. 

     Usually, the person with an ileostomy has been on or tried special diets for years.  After surgery, he/she is desirous to move onto his/her post-surgical life.  However, there are foods that may cause concerns, gas or odors.  The patient must be aware of correctly introducing foods into his/her diet once again.  The patient should also be instructed on what procedures to implement in case of problems like food blockages, dehydration or injury to other parts of the body. 

     A correct routine in handling these concerns will provide the patient with the best quality-of-life after surgery.

 

Urostomy Complications

Forwarded by our friends in Canada

 

     People with urostomies may have complications developing as far as after 10 to 12 years after surgery.  Most complications are gradual.  Probably an ill-fitting pouch causes the most common challenges.  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 skin barrier that fits right up to the stoma to prevent this and other long-term complications. 

     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 instructions through the advice of one’s doctor, 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's or sand-like deposits on or around the stoma are another complication.  When these deposits are noticed, it is sometimes beneficial to start to increase your intake of cranberry juice.  Vitamin C is also good and your physician may order Mandelamine to increase urine acidity even more.  Orange juice is not recommended because of the high alkaline ash residue. 

     One part vinegar to two parts water sloshed over the stoma may help if done once or twice a day.  This encrustation can clog up the stoma and eventually cause a closure of the stoma. 

     Recurrent urinary tract infections are prevalent in most people with urostomies.  Most of you know the symptoms, fever, a strong urine odor, decrease output, amber-colored urine with a large amount of white sediment.  You may need more fluids.  You should be drinking at lease 64 ounces (two liters) of water each day . . . make sure you discuss this with you doctor to make sure you are not one of those rare people who should not drink excessive amounts of water.  This will reduce infections and prevent kidney stones.  Cleanliness is also very important.

     People with urostomies should empty the pouch before it passes the half-full level.  There is a chance that the pouch will pull away from its seal because it is too heavy. There is also a higher chance of urine backing up into the conduit if the pouch if full.

     Certain brands of pouches are affected by certain cleaning solutions.  For instance, United Surgical's quality control laboratory has determined that using a vinegar and water solution to rinse United pouches changes the vinyl.  They recommend their Uri-Kleen or Uni-Wash or other approved products to clean their pouches.  Discuss this with your WOC nurse or contact a manufacturer directly.

     The use of a small wastebasket at the side of the bed provides a handy storage place for your night drainage unit.  It also prevents kicking it over in the middle of the night.  Also, when connecting your pouch to your night drainage container, do not completely empty your pouch.  The collected urine will run down the tubing into the container and produce a siphon effect, which will facilitate keeping your pouch empty during the night—a good thing.

 

How to go on a Doctor's Visit

Lutheran General Hospital

 

     Have you ever gone to a medical appointment only to find yourself unable to remember the details of your health history or struggling to recall your questions for the doctor?  If so, you are not alone.  It can be tough explaining your symptoms, understanding your doctor’s advice, especially if you are anxious, or not feeling well.  Medical professionals offer this advice when for making the most of your doctor visits:

     Organize a health file:  It is always useful to have information about your history on hand.  Bring a detailed list of previous medical issues; i.e., the dates you had surgery and what was done; medications taken and any reactions.

     Also, bring pertinent information about your family's health history and records of immunizations.  Ask your doctor for copies of your medical records and any relevant test results to keep in your personal files.  Do not forget to keep a list of previous doctors' names and addresses.

     Schedule your appointment wisely:  Plan ahead for your appointment by getting your medical records from laboratories or previous physicians transferred to your doctor's office.  When scheduling appointments, ask if there are certain days of the week less busy than others are.  Also, ask about the expected length of the appointment so you can plan you time accordingly.  If neither of you feel rushed, you are more likely to cover all the issues you want to discuss.

     Bring your medication bottles:  Your doctor will want to know about the medications you are taking, their dosage and frequency, how long you have been taking them and possibly contact the prescribing physician.  Having the actual bottle provides all this information.  Do not forget the over-the-counter remedies, vitamins and herbs you are taking.  All of these can affect your diagnosis and your treatment.

     Make a list:  It is easy to feel tongue-tied, especially if it is your first visit with a new doctor.  To ease some of this anxiety, write down your thoughts ahead of time.  Having this information on hand will keep you from forgetting any questions you have.  A list is particularly helpful for those with multiple health needs.  It gives your doctor a complete picture of your concerns and helps prioritize issues that need to be addressed.

     Be Prepared for questions about your symptoms:  Before your appointment, take a few moments to think more intensely about your condition.  When did you first notice the problem?  Have you had the problem before?  What are your symptoms?  How often do they occur?  If you are in pain, do you describe it as a dull ache or a stabbing pain?  What have you done for it?  Does anything make it worse?  Have there been changes lately in your life related to stress, medications, food or exercise?  The more clearly you can define the health problems, the more likely your doctor will be able to find the best possible solution.

     Bring your diary with you:  At your appointment, having a diary is helpful for many reasons.  Write down when the doctor thinks you will start noticing improvements in your health condition, the dates and directions for receiving any lab test results and the date and time of your next visit.  You may also find a planner useful for jotting down your doctor's advice for taking prescribed medicines or preparing for lab tests.