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a ient Guide
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Dear New Ostomy Patient, support and educational meetings where you can get answers to those questions that so many new patients Welcome to the United Ostomy Associations of have and where fellow members can share with you America and your free New Patient Guide. It is brought their experiences. You will fi nd, upon attending, that to you by UOAA, its over 300 local affi liated support you are greeted warmly and treated like a member of groups throughout the United States, and by its offi cial an extended family.
publication, The Phoenix magazine. We believe that it is very important for you to have as much information about your ostomy as possible. UOAA's Management Board of Directors Undoubtedly, you have heard many stories about people with an ostomy or related procedure, many of which are P.S. This free New Patient Guide is made possible by based on ignorance and "old-wives' tales." We are here subscriptions to The Phoenix magazine and donations to dispel those and help you move beyond the stigma! to the UOAA. Your support is appreciated. In this magazine, you will fi nd answers by medical professionals to many of your basic questions, hints P.S.S. Visit www.phoenixuoaa.org to learn more about living with your ostomy and motivational stories about America's leading ostomy magazine.
describing quality of life accomplishments from some of the 700,000 people in the United States that have an ostomy. In fact, articles fi rst appeared in The Phoenix magazine, with subscriptions being a major source of revenue for the UOAA.
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Continent Internal Pouches
By Gregg L. Shore, MD, FASCS, FASCRS Mission Viejo, CA 92690 Her Winning Ways
By Joanne Olshan Janice Rafferty, MD Marlene Muchoney, RN, CWOCN No part of this publication may be Continent Urinary Diversions
reproduced without the prior written permission of the publisher. Printed By Roni Olsen in the U.S.A. Opinions expressed by authors are their own and not necessarily those of the United Ostomy Associations of America Inc., the publisher, the editorial consultants or The publisher makes no representation concerning the accuracy or truth of any matter or statement in any advertisement contained herein and disclaims all liability relating thereto. Advertising rates and requirements sent on request: publisher@phoenixuoaa.
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Continent Diversion New Patient Guide The Phoenix

Ask Dr. Beck
Enlarging Stomas, Drainage, Lethargy and Watery Output
their new anatomy. This usually occurs I just had J-Pouch surgery six months over about 6 months. At that time we ago and I am going to the bathroom 10-14 usually start reducing the medications the times a day. Is there a way to reduce the patient is taking.
number of trips to the bathroom? Dear New Patient, I had a Kock Pouch done about three Dr. Beck is board There are a number of measures that months ago. I'd like to start running, cycling certifi ed in General can be tried to reduce the number of bowel and swimming again, but I'm afraid I might and Colon and Rectal Surgery and is a Fellow movements after creation of an ileoanal hurt the pouch. Is there anything I should of the American College anastomosis. The fi rst option is dietary do to avoid problems? Are these activities of Surgeons and the measures. Avoid foods that increase the safe with an internal pouch? American Society number of bowel movements. Patients of Colon and Rectal Surgeons. Dr. Beck are helped by eating large breakfasts and Dear New Patient, conducts research into lunches, then a small, early dinner. Most physical activities are safe with colorectal diseases, Taking additional fi ber helps many a continent ileostomy. The major potential has authored and patients to form or bulk their stools. risk is either a blow to the abdominal wall edited seven medical textbooks, written However, in some patients fi ber produces or activity that transmits severe force to the numerous scientifi c more bowel movements. Trial and error is body. An example would be a severe fall publications. Dr. Beck is the only way to fi nd how it will affect you.
or a major automobile accident where the a nationally recognized The next option is medication. These body is restrained (ie with a seat belt) but expert in infl ammatory bowel disease, anal are usually added in a step-wise fashion. the force of the accident causes the pouch cancer, adhesions, We usually start with Imodium (available to be compressed or stretched. sphincter saving over the counter) at 2-4 mg orally 30 With signifi cant force, there is a risk the surgery for cancer, and minutes before meals and at bedtime. The pouch could rupture or be torn away from amount taken is gradually increased up to its attachments to the abdominal wall. The Send questions to 16 mg (eight pills) per day. Sometimes the chance of this happening is rare and can liquid form is more effective initially than be minimized by emptying your pouch P.O. Box 3605 prior to engaging in physical activity. Mission Viejo, CA 92690 Next we add Lomotil (prescription) in a With an empty pouch, activities like similar fashion: 1-2 pills orally 30 minutes running, cycling and swimming should be fi ne.
before meals and at bedtime. The third drug used is codeine (30-60 mg) 1-4 times a day. The fourth medication is a morphine elixir (Roxinal) 5-20 drops 4 times a day.
Get Answers
Other options that may help some Do you have a question for Dr. Beck patients is Bismuth (Pepto-bismol) or a or Nurse Junkin? You can e-mail your binding agent such as Questran.(cholesty question to [email protected] or you With some or all of these measures a The Phoenix Magazine, patient's bowel frequency can be reduced P.O. Box 3605, ission Viejo, CA 92690 while their intestine and kidneys adapt to The Phoenix Continent Diversion New Patient Guide with a chemical sclerosing agent such as silver nitrate I had my fi nal j-pouch surgery one month ago and sticks. Larger cavities may need to be treated surgically.
I am doing OK except for really strong cramps. Is this normal? Should I take something for the cramps? Will One or Two Steps?
they decrease over time? I had my colon removed several years ago, but now I'm going to try the j-pouch. My surgeon said the surgery Dear New Patient, will probably be a one-step procedure. I've been told The cramps will usually decrease over time. They that the two-step is better. Is this true? may result from a number of causes. Three of the more common reasons are irritable bowel syndrome (IBS), Dear New Patient, adhesions, or medications. Medications such as pain An elective (planned) restorative proctocolectomy meds, psychiatric drugs, sedatives, or bowel agents such or ileoanal pouch procedure can be performed in as Imodium may produce cramps at higher doses. one or two stages. With a two-stage process, the fi rst The fi rst step is to review your medications and see operation involves removing the colon and upper if some can be eliminated or changed. Adhesions are rectum, using small bowel to create a pelvic pouch common after any abdominal surgery. The presence which is connected to the anus, and creating a diverting of adhesions may cause some cramping as they may loop ileostomy. The second stage or procedure involves partially kink the bowel. These usually soften with closing the ileostomy. time and the symptoms will improve. Irritable bowel With a one-stage procedure, the diverting ileostomy syndrome is a motility disorder of the small bowel. It is is not used. Restorative proctocolectomies are often helped with changes in diet (usually adding fi ber challenging and complicated procedures. Patients who helps) or medications. Your primary care physician or need these operations are often ill, malnourished, and gastroenterologist can often offer some suggestions.
on immunosuppressive medications. The complications associated with the procedures are signifi cant. The ileostomy diverts the intestinal contents from the pouch I am a little over two months out from having a and provides time for the pouch to heal. k-pouch. I am still having a good deal of drainage from This diversion does not prevent complications such the barbie/ken butt area. Is this normal? as a leak from the suture lines or infections. However, diversion does affect the signifi cance of complications. Dear New Patient, In other words, a leak from an undiverted pouch A proctocolectomy removes the colon, rectum can produce serious and potentially life threatening and anus. The surgery on the anus can be performed problems. A leak from a diverted pouch is often in a number of ways that range from removal of the anal lining to removing the anal lining and the anal A two-stage procedure does have some disadvantages. Two operations and hospitalizations are The more tissue removed, the larger the residual required and each has a certain risk of complications. cavity that is left to heal and the larger the perineal During the 6-12 weeks between procedures, the patient incision. If the cavity doesn't heal completely, fl uid may has an ileostomy which can produce skin irritation and form which will often drain out the perineum. This tissue electrolyte abnormalities. fl uid drainage in not "normal" but not uncommon. The The decision to choose one or two stages must drainage usually decreases with time and eventually involve the surgeon and the patient. Factors to take into stops altogether. account include, the experience of the surgeon, the If the drainage continues, your surgeon should patient's risk factors and tolerance of risk. The decision inspect the area to be sure that a residual cavity is not is not always easy and must be individualized. However, present or that all the intestinal lining tissue was not the majority of procedures performed are usually completely removed. Small cavities can often be treated two-stage procedures. Continent Diversion New Patient Guide The Phoenix

Ask Nurse Junkin
Pouch Flushing, Bottom Burn, Intimacy
Indiana Pouch Flush
slow the bowel at fi rst. How do you fl ush out an Indiana To care for the burned skin: best to pouch? Is there a way to make the solution start with a soft, disposable pre-moistened at home? How often should I fl ush? cloth rather than rough fabric cloths. If you can't get any, you could use a paper These are questions that should towel, slightly moistened, and pat the Joan Junkin, MSN, defi nitely be answered by your surgeon area dry after each bowel movement APRN-CNS, CWOCN because each has their own preferences rather than rubbing. It also helps to apply had her ostomy education through and some are determined by the technique a thin coat of petrolatum (ie Vaseline) to MD Anderson Cancer they use in operating room.
the cloth before wiping gently, Secondly: Center in 1997. She after GENTLY patting the area clean, has worked as a wound Kock Pouch
apply a zinc oxide ointment (ie Desitin and ostomy nurse since then at the University I just got a Kock pouch and wondering or Calmoseptine which adds a bit of of Nebraska Medical what I'm going to use to cover the stoma. calamine lotion to sooth) to a non-stick Center in Omaha NE I've read that I only need a plaster and my dressing such as a Telfa or an ARD (made and BryanLGH Medical stoma nurse says I should use one of those by Birchwood Labs- only about $5 for a Center in LIncoln NE, where she currently coaster-type stoma caps. What works box of 24) and tuck that in right over the sees patients with burned area. If you use the ARDs they are ostomies and continent fl ushable, if you use the Telfa type, they diversions. She What works best is something only published an article in JWOCN about the you can determine. Each person has their If you use these 2 steps each time you importance of teaching own preferences. I would recommend that leak, you will soon be healed. Do NOT try about sexuality for you get samples from several companies to scrub or wash all the old ointment off persons with a urinary of the stoma caps (Coloplast, Convatec each time- just soak the stool off the top or fecal diversion. This won the 2006 CLinical and Hollister for instance) and there is layer- and leave the rest on. Then apply the Manuscript award from a company that makes one called the new dressing with the zinc oxide on it to AMD patch specifi cally for continent the same area.
Send questions to [email protected] or P.O. Box 3605 J-Pouch "Take Down"
I'm getting a lot of fl uid leaking out of Mission Viejo, CA 92690 I recently had my j-pouch "take down" the incision site for the j-pouch surgery, surgery and I'm experiencing a lot of but I don't have a temperature. Is this bowel movements - up to 20 times a day. something I should be worried about? My bottom is really sore and burns. What can I use to stop the pain and start healing This is defi nitely something to see that area? your surgeon about. Most likely it is a minor issue, but the surgeon needs to be To start with I would recommend that aware of it and assess the problem. Some you eat frequent small amounts, especially of the possible causes include something starchy foods, which help thicken and called a seroma (a leak of serous fl uid- not neutralize your stools. If this does not help serious, but sometimes requires cautery in them slow down, speak to your surgeon the offi ce); adipose tissue (if your abdomen or gastroenterologist about medication to includes quite a bit of adipose tissue, then The Phoenix Continent Diversion New Patient Guide extra clear fl uid would be expected because that type of the internal pouch. This is something that would need of tissue has a high water content); as you suspected, medicine to treat.
infection is also a possibility- even if you don't have a temperature. If the body has walled off the infection (called an I have had a j-pouch for two years. Each night when abscess) then sometimes you don't have a temperature I'm asleep, I have more than just a leak, it's a full bowel at fi rst. It will be helpful for the surgeon to have a written movement. I have tried wafers , diet etc. How can I fi x record of your daily temperatures, how much and what this problem? color of drainage is on each dressing when you change it and how often you had to change the dressing. Be You have the right idea about trying to alter your diet sure to also mention any odor you may have noticed. If to help this problem. It may also require medication to you change the dressing right before seeing the surgeon, alter your bowel habits. You could work with a dietician bring it with you in a self-sealing plastic bag so they can that deals specifi cally with diversions. If this is not see what the amount and type is.
successful, or you have already tried that route, then you would want to fi nd a gastroenterologist that is familiar Bottom Burn
with continent diversions or short gut syndrome issues. My wife has butt burn right now and is wondering if They have medications that can assist with changing the it is due to any foods or drinks she has had. Are there bowel movement patterns. foods or drinks that cause this? If she has a j-pouch type diversion it is likely related I have a kock pouch for stool and I worry that when to her intake, especially if her take-down was recent. I have sex that will cause a leak. What can I do? It is helpful to have frequent small amounts of starchy foods to help neutralize the stool. Foods like banana, There are several things to consider here. Has your unsweetened applesauce, potatoes, crackers (many like surgical incision healed well enough so that pain will animal crackers the best for slowing the stool down), or not be an issue? If not, you may consider a position that bread products are helpful to slow the stool. avoids pressure on the incision. To start with, it helps to have a small amount Secondly, prior to having intercourse, empty the every hour- this prevents your stomach from over- pouch. Then, you may consider wearing a cap or patch producing acid. Don't forget to include small amounts just to feel more confi dent. Some people like to wear of fl uid each time. Many fi nd it useful to avoid fl uids a cloth tube around their mid-section to protect their containing caffeine or highly acidic fl uids such as fruit diversion opening and keep any patch or cap from juices to start with. I would recommend going to the dislodging during sex. There are very nice, soft, attractive UOAA website and checking out the dietary guideline resources they offer. Another popular way to slow stool THe UOAA has a nice resource on sexuality and also is marshmallows, although you would want to limit that that is naturally a popular topic on the various web sites option due to the high calorie/ high sugar content.
available to persons with diversions. Do keep in mind that although it is common for couples to use various orifi ces for sexual pleasure, it is important not to use My ileostomy reversal and "take down" surgery was the opening for your pouch. FIrst of all, it does not have two weeks ago. The burning on my back side is being nerve endings that will add to your pleasure, but also it controlled, but I have an itch that seems to come from a would most likely damage the delicate internal valve to deeper area. It's very uncomfortable and I can't seem to insert anything other than your soft fl exible catheter into not scratch it. Is it OK to scratch? If not, how can I stop the opening. Damaging the valve would cause leaks it from itching? and possibly even more serious complications.
One last thought for you. By now you have likely Please check with your surgeon about this. You should found certain foods that help slow and thicken your have a post-op visit coming up soon. One reason for this stool. If you use them prior to a sexual encounter this is that the nerves have been disturbed during surgery and will add yet another layer of security for you, since the may still be irritated. In this case it will likely decrease thicker your stool is the less likely it would be to leak at over time. Another reason is pouchitis, an infl ammation Continent Diversion New Patient Guide The Phoenix Continent
Gregg I. Shore M.D. FASCS, FASCRS Board-Certifi ed Colorectal Surgeon The continent ileostomy was fi rst pioneered by Dr. Director, Center for Intestinal Continence Nils Kock, a Swedish surgeon, in 1969 and has since St. Anthony's Hospital undergone many changes and improvements that have St. Petersburg, Florida made it very reliable and a life-changing option. Since its introduction by Dr. Kock, the continent Prior to 1980, the only surgical operation to cure ileostomy is currently offered by only a limited number ulcerative colitis and familial polyposis was total of centers in the USA and around the world, as it has proctocolectomy (complete removal of the colon and largely been replaced by the IAPA, specifi cally the the rectum) with permanent end (Brooke) ileostomy. j-pouch procedure. Results from these centers are quite Despite the challenges of living with a conventional good and patient satisfaction very high. Modifi cations ileostomy, most people with a well-constructed ostomy over the years have included improving the length of the are able to live normal, healthy and active lives. valve and surgical technique that keep the valve from Over the past 25 years, new surgical alternatives slipping. The creation by the late Dr. William Barnett of have been developed and refi ned that give patients the "living collar" has decreased slippage to less than alternatives to a lifelong conventional ostomy. These 10%. A slipped valve remains one of the most common alternative procedures include continent ileostomies, complications of the continent ileostomy.
pelvic pouches and "pull-throughs." Each category has Reduction of complications is also shown when several variations. the surgery is performed by a board certifi ed colon- Continent ileostomies include the Kock pouch, rectal surgeon who specializes in pouch and continent T-pouch and Barnett Continent Intestinal Reservoir, reservoir surgery. (BCIR). Pelvic pouches are also called ileoanal pouch anastomosis (IAPA) and further described by the shape Candidates
of the pouch: j-pouch (the most common), s-pouch, The fi rst step is to discuss it with your surgeon (see w-pouch. Pull-through procedures involve removing a sidebar). The primary criteria are an ileostomy and both section of intestine and reconnecting the bowel without the rectum and anus have been removed. A minimum creating a pouch. Both IAPA and pull-throughs allow for of 14 feet of small bowel is recommended to minimize a normal route of evacuation.
the potential for short bowel syndrome if the continent reservoir fails and needs to be removed. Morbid obesity is a contra-indication due to the high incidence of valve A continent ileostomy is a reservoir constructed dysfunction due to thick abdominal wall fat. from the small intestine that is able to store a signifi cant A very select group of patients with Crohn's disease amount of fecal waste. The Kock pouch and BCIR are may be considered. If you are not a candidate for a constructed from small intestine with an exit stoma for pelvic pouch or have one that has failed, a continent feces fl ush with skin and below the belt line. The main ileostomy is currently the only alternative to have an candidates are patients who have had their anal sphincter muscles removed and currently have an ostomy or have Patients with a colostomy frequently ask if they are poorly functioning anal sphincter muscles and are not candidates. The pouch is made from small bowel, so any candidates for a pelvic pouch or have a pelvic pouch remaining large intestine would have to be removed. If that doesn't work adequately. only a couple of feet remain, this is not an issue. If the The IAPA or pelvic pouch, is also a reservoir majority of your colon is intact, this is a radical surgical constructed from the small bowel, but it is connected option to consider. Only after extensive discussion and to the anus and sphincter muscles directly and exit of the concurrence of your primary doctors should this feces occurs through one's natural orifi ce.
option be considered.
The Phoenix Continent Diversion New Patient Guide

Left: Figure A, continent ileostomy Approximately two feet of (notice the catheter for emptying). small bowel is used to create Figure B, the "j-pouch" variation of the continent reservoir (see an ileoanal pouch anast0mosis. fi gure A). The stoma is fl ush on the right side, usually parallel care of continent procedures. with the hip bone.
Patients must be highly Postoperatively, the continent motivated and realize there is reservoir is allowed to rest by a signifi cant amount of risk that an indwelling catheter for two- may require further surgery to to-three weeks. This is to allow correct potential problems.
the new reservoir suture line to Like all surgeries, continent heal properly to prevent leakage ileostomies have pros and cons. problems. Some patients will The obvious advantage is an need to be on suction in the appliance-free life. The cost of hospital for several weeks, but supplies is signifi cantly reduced others may be discharged within compared to a conventional a week with a catheter sutured ileostomy. The average cost of to the skin or held in place with the tubes used to intubate and a fi xation device and connected drain the reservoirs is only $25- to a leg bag.
50 and need to be replaced only After two to six weeks, "self two to three times a year. For intubation" begins at two-hour those who have problems with intervals, eventually working their ileostomy, it can be a new- up to three to four times a day. found freedom.
A small pad is needed to cover The disadvantages are the stoma in order to absorb complications that will require mucous drainage that occurs additional surgery to repair; periodically. Change in diet is these include slipped valve, minimal provided you chew intestinal fi stula and pouchitis. your food well and increase Complications not unique to this your fl uid intake to keep your type of surgery would include stool a thin consistency.
bleeding, intestinal obstruction There are very few restrictions and peristomal hernias.
in the life style with a continent ostomy, although vigorous physical activity should only 1: Pouchitis: This refers to be performed with an empty an infl ammation of the pouch. pouch. Direct trauma to the It is generally a condition pouch may cause problems, wherein the patient will develop especially if the pouch is full. abnormal cramps, feeling poorly, frequent bowel movements and possible fever.
A) Mild – diet change, antispasmodics and Continent ileostomy surgery is demanding, both on the surgeons who need to contribute a high level of skill Moderate – antibiotics or probiotics.
and commitment to long-term care and on the patient. Severe – hospitalization, bowel rest and IV Therefore, it is best to consult board certifi ed colon-rectal antibiotics; possible steroid therapy. In the rare surgeons who are comfortable with all surgical options instance where pouchitis does not repond to and have signifi cant experience with the creation and therapy, pouch removal may be required.
Continent Diversion New Patient Guide The Phoenix 2. Stoma Stenosis: This is the narrowing of the stoma that may Finding a Surgeon
occur during healing. A simple Creating an internal pouch outpatient surgery can repair this.
requires a high level of training 3. Slipped valve: The valve has and skill. An internal reservoir that become desusscepted. The valve is is not constructed properly could coming apart and returning to its necessitate additional surgeries to original state. When this occurs, repair. If repair is not possible, the it will become shorter, the access pouch will need to be removed or segment will apear longer and not bypassed. Therefore, it is important straight. Therefore, intubations will to consult surgeons with experience become diffi cult and the pouch will constructing internal reservoirs and managing the possible complications leak intestinal waste through the after surgery.
stoma. This will require surgery to Begin your search by talking to your primary care physician, ostomy 4. Fistula: An abnormal sinus nurse, gastrointestinal doctor or with the gastrointestinal tract. current surgeon if you have one. Place of occurrence will depend If you are a candidate, explain your on treatment: TPN (no eating by interest to get their opinion. mouth), bowel rest and surgery.
Referrals from someone who has had the surgery are helpful to get a patient's perspective. Affi liated support groups of the UOAA, including the Continent Diversion Network, Pull In the 1940s and 1950s, Thru Network (for minors) and Quality of Life Association have members procedures that connected the who have had surgery. small intestine directly to the Professional societies are an excellent resource to fi nd qualifi ed anal sphincter often resulted in surgeons. The American Society of Colon and Rectal Surgeons has over severe fecal urgency (the sudden, 2,600 members and also certifi es surgeons who meet educational, credentialing and examination requirements. ASCRS can be reached at unstoppable urge to defecate), 847-290-9184, [email protected] and www.fascrs.org.
frequency and perianal skin The Society of American Gastrointestinal and Endoscopic Surgeons has breakdown. In the 1980s, pelvic over 5,000 members who use endoscopy and laparoscopy as an integral pouches evolved from the continent part of their practice. SAGE can be reached at 310-437-0544, by e-mail at ileostomy. By allowing passage of [email protected] and on the internet at www.sages.org.
stool through the anal orifi ce, the Internal pouches can provide an improved quality of life. Finding the procedures are the closest to the right surgeon is paramount due the high level of skill and experience natural way of eliminating fecal required as well as the important follow-up care to address any complications that may arise.
The operation is performed in to offer those patients who have The pelvic pouch also requires either one, two or three stages, had medically refractory ulcerative the usage of 8 to 18 inches of the depending on the health of the colitis or familial adenomatous small bowel to construct a substitute patient and the health of the polyposis syndrome. This procedure rectum. Once the colon and rectum intestines. Usually, a temporary can only be performed on patients are removed, preserving only the loop ileostomy is used to allow who still have their anal canal and anus, the small intestines have proper healing of the pouch for properly functioning sphincters. minimal capacity to store stool. approximately three months.
Sometimes, during surgery, it is To make a functional reservoir, the determined that the pelvic pouch small bowel is folded on itself and cannot be connected to the anus the adjacent bowel loops sewn or The j-pouch is the current "gold stapled together.
standard" and fi rst choice procedure continued on page 19 10 The Phoenix
Continent Diversion New Patient Guide June 2010 • Volume 5, Issue 3olume 5, Issue 3
The Phoenix ostomy magazine is fi lled with 72 pages of inspiration, education and information to help College student heads national
ostomy patients return to a full, active and productive Beginning A
eness campaign
New Chapter
life. Just ask ostomate Jessica Grossman (right) who Hollywood Pr
oducer's Life Story
wist for the Better
headed an ostomy awareness campaign! Ask the Dr.
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Each Issue includes:
• Ask Nurse Muchoney "The Phoenix magazine is the most important tool • Ask Dr. Rafferty that ostomates can get a hold of." - M. Bauer, Nebraska "I didn't know anything about ostomies. Mangement Techniques The Phoenix magazine has helped me so much." - R. Hodges, Arizona Support Group Listing • And much more!! More Than A Magazine. $12.50 of each subscription goes directly to fund the nonprofi t United Ostomy Associations of Americawho provide vital information, support and advocacy for ostomates in America. ORDER FORM
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values and younger brother Andrew was her best friend. All in all, Weatherton considered her childhood to be normal.until her eleventh year.
When she woke in the night screaming with pain, Weatherton's mom Donna, who was a nurse, From J-Pouch Surgery to was fairly certain of the cause. Donna's mother-in-law had intestinal problems that led to the partial "Road Rules" Champion removal of her large intestine. A trip to the hospital for a seemingly endless run of tests, most of which Weatherton does not remember except for a lower GI, revealed a clump of cells that looked By Joanne Olshan like Crohn's disease cells. Accordingly, she was given medicine for Crohn's disease and sent home. If you met Jodi Weatherton, you might get the impression Remarkably the pain vanished and the disease that she's the "girl next door." She's young and pretty, went into remission.
intelligent, athletic and full of personality. But in the It wasn't until fi ve years later when Weatherton 25 years that Jodi has lived, she has been faced with was 16 and living in Massachusetts that the pain challenges that most people won't experience in a fl ared up again. This time doctors prescribed oral lifetime. To her, it's all just a matter of fact and as she steroids. Weatherton remembers gaining sixteen nonchalantly puts it, "no big deal." pounds in a week from the medication, but she So how does one manage that kind of mindset after remained on the steroids for a couple of months, having endured excruciating pain at the tender age of and then was slowly weaned off. Again, the disease 11, a two and a half month hospital stay, four blood went into remission. transfusions, three major surgeries at 16 and countless The relief was short-lived; Weatherton found herself moments of anguish? For all of the complexities of life running to the bathroom with severe diarrhea coupled dished out to Weatherton, her answer is surprisingly with severe pain. "It was diffi cult to live a normal life," recalls Weatherton. "Socializing and sports were Weatherton was born in Herndon, Virginia. Her dad especially challenging." As a dedicated member of was a salesman so the family moved quite a bit before the track team, jumping the hurdles became a huge ending up back in Virginia in the city of Vienna. Because dilemma for Weatherton. Uncomfortable about talking of the frequent moves, Weatherton never really got a to her coach, she instead chose to remedy the situation chance to sustain friendships during her earlier years. by wearing a large pad. Afterward a friend would help Still, her family was close-knit with strong Christian her run to the bathroom. Despite ongoing problems, the 12 The Phoenix
Continent Diversion New Patient Guide Weatherton had no idea of what she was about to go through and in hindsight says she was better off. A new series of tests diagnosed her condition as ulcerative colitis. In addition to receiving four blood transfusions, Weatherton had to make some major adjustments. Fortunately she had tremendous support from her family and from her friends who would bring Weatherton schoolwork and keep her company. Her mother made arrangements with the hospital to stay with her daughter for the entire time she was there. She remembers all the wheelchair rides her mom would give her just to pass the time, and Weatherton's dad, who was working in Boston then, stopped by the hospital every night on his way home. Her longtime boyfriend was also a constant presence during her recuperation and the two went from hospital room to Junior Prom even though she was not fully recovered. Now Weatherton needed to make a decision about treatment. Doctors offered her two options: drugs with side effects or surgery. "I had never even broken a bone, so surgery was a huge step," she says. Weatherton opted for drug therapy which consisted of ten pills a day and resulted in tremors. Her hands would shake if she got excited and she says, "I never felt quite right and I never had a normal stool." When she came home from the hospital, the severe problems resurfaced and it seemed surgery was unavoidable.
This time when Weatherton reentered the hospital, it was for a restorative proctocolectomy, also called a J-Pouch. Normally achieved in a two-stage surgery, Weatherton would have to go under the knife three times because she was so ill. The operation involves removal of the entire colon and all, or nearly all, of the rectum but leaving the anal sphincter muscle intact. What is known as a J-Pouch (because it looks like the letter "J") is constructed from 10 to 12 inches of the medicine did help and she managed to fi nish the track small intestine as a reservoir for waste and replaces the season in her 16th year. function of the rectum. The pouch is then connected to But in the spring of that same year, Weatherton's the remaining anal sphincter muscle so that elimination problems went from severe diarrhea with blood to remains relatively the same. stools that were entirely blood-fi lled. Not wanting to In Weatherton's case, the fi rst surgery entailed see more doctors or return to the hospital, she hid her removal of the whole large intestine. Afterward, wearing condition from her mother. When the bleeding wouldn't an ileostomy bag for three months was hard, because stop, Weatherton became frightened and eventually she says, "the kids at school did not understand and told her mom. She was immediately admitted to Boston I felt embarrassed." The second surgery involved the Children's Hospital for what would be a 2 1/2 month construction of the J-Pouch from normal small intestine stay. Donna remembers the incredible team of doctors. which is then sewn or stapled to the anal muscles and a But even more incredible to Weatherton's mom was that temporary "loop" ileostomy is created to allow the bowel throughout the entire ordeal, her daughter never once to heal and to protect the newly formed J-Pouch. During her senior year in high school Weatherton Continent Diversion New Patient Guide The Phoenix had her fi nal surgery which reversed the "loop" and right away but that she never felt sorry for herself or closed the ileostomy. "I am one of the lucky cases," she made a big deal about it. Other than carefully planning explains. "Many people cannot have this type of surgery. what she was going to eat and always turning on the People who do have the surgery often have constant water when she used the bathroom, Perpillar says that problems with the pouch because Weatherton was not only a very they have Crohn's disease or they positive person but also a very are not able to control it and have caring, generous and outgoing individual. "She loved sports and Her doctor gave her strict was really into studying. Jodi is instructions to ensure the success strong-willed but very sweet," of the J-Pouch and Weatherton says Perpillar.
complied. "I was very diligent. I Weatherton describes dating had to have enemas every night as "interesting" and says that there for a month and train the muscles is always that nervous feeling to work again. It wasn't fun, but I that she'll have to talk about her did it. I've had the pouch for eight surgery and her frequent trips years now without ever having to the bathroom. Generally, Above: Weatherton posing with a fellow cast pouchitis and I'm pain-free." however, most of her dates don't member of the MTV show "The Gauntlet." Even before the worst of ask or don't seem to care. Still, she Opposite: Relaxing with the winning rookie her problems were behind her, is always concerned about having team on the "The Gauntlet II." Weatherton seemed determined access to a bathroom wherever to get back to the things that she goes and long vacations are mattered the most to her. She participated in sports after defi nitely out at the moment. But she's not complaining. every surgery including volleyball and basketball. After On the contrary, Weatherton doesn't seem to have room her third surgery she took on a role in the school play in her life for negativity and perhaps this positive attitude and as her senior year came to a close, she graduated is how she landed a spot on MTV's Road Rules.
with the rest of her class. "I never thought I wouldn't live In September of 2004, after fi nishing college, a normal life," Weatherton says. She credits the positive Weatherton decided to audition for the popular MTV infl uences in her life, particularly her mom, for being series. The show involves traveling around the country in able to look on the bright side of things. Their closeness an RV with other contestants and competing in a variety has given her strength during the most trying of times.
of challenges requiring not only guts, but incredible But normal could be a little tricky as Weatherton athletic ability. On each of the episodes, players who would discover after entering college. She fi rst attended lose challenges are eliminated until there are only four Geneva College in Beaver Falls, Pennsylvania, and then fi nal contestants, two guys and two girls. transferred two years later to Virginia Commonwealth Weatherton thought it sounded like fun so she called University in Richmond where she graduated in August her parents and asked them to help her make an audition of 2004 with a degree in psychology. tape. According to Donna, she and Weatherton's Weatherton admits that she struggled with her father weren't thrilled with the idea but agreed to help condition while in college. She lived in the dorm and in anyway. "I was pretty sure that when the producers the beginning nobody but her roommate knew about her found out about Jodi's surgery, they wouldn't select her," surgery or the reason why she had to go the bathroom said Donna. Weatherton's parents fi lmed her water- more often than the average person. She remembers skiing, wakeboarding, riding her dirt bike and making one uncomfortable moment that also served as a turning chocolate chip cookies. Within a week after receiving point. "I was putting on my book bag and my shirt rose Weatherton's audition tape, the show's producers called. up a bit. A boy noticed my scar and asked about it. But During the 3 1/2 month interview process Weatherton I thought, this is me and it's part of my life, so I can't let told the producers about her surgery but did not get into the details. In the end she was selected as one of the Close friend Tiffany Perpillar has known Weatherton twenty contestants from among 30,000 applicants. for seven years. They met while in college. Perpillar As fi lming was about to begin, Weatherton was says that Weatherton shared her condition with her relieved to learn that the RV bathroom was not to be 14 The Phoenix
Continent Diversion New Patient Guide used. Instead, she says, "We made tons of bathroom to get what she refers to as "a real job." Following in stops." She describes the experience as amazing and her father's footsteps, she became a commercial sales says she made friends despite the fact that the producers representative this past October. She enjoys the profession deliberately choose players who might clash to create and is interested in getting into pharmaceutical sales. some drama during the show. Eventually, she'd also like to get Weatherton she had to bungee married and have kids. jump, repel down a waterfall and Outside of work, Weatherton walk a tight rope 150 feet in the continues to stay fi t at the gym air between two buildings.
she attends at least three or With time to spare before four times a week and plays fi lming of the fi nal Road Rules basketball there just for fun. Ever episode that she was to appear on, the sports enthusiast, she played Weatherton enrolled in Ecola Bible on a softball league through her School in Cannon Beach, Oregon. church where she also volunteers As amazing as the whole MTV whenever she can.
experience was, Weatherton felt In addition, Weatherton makes that she had drifted away from what was really important time for the occasional speaking engagement at church to her. She had grown up in a Christian home and her conferences and youth groups but always seems a bit faith had always been an important part of who she was. surprised when she's invited to do so. As inspirational Deciding it was time to rediscover her relationship with as her life is to others, she really doesn't understand God, she attended Ecola for seven months, graduating what all the fuss is about. Most recently she spoke at with a short term Bible degree. the Y.O.D.A.A. Conference. The young ostomates in the Following Bible school, Weatherton returned to MTV audience listened intently as she shared her life after J- for the fi lming of her last episode of Road Rules. She had made it into the fi nal four and had already been Having walked in their shoes, it's important for rewarded with a car from winning a challenge on a Weatherton to convey the message that having a positive previous episode. But this latest competition offered the attitude is paramount. She considers herself "really top male and female contestants a whopping $150,000 lucky" and explains that young people can bounce cash prize for each. The episode, which recently aired back quicker from J-Pouch surgery but emphasizes that on January 18th took place in sunny Rio de Janeiro. success is also based on frame of mind. "I have always Weatherton looked tanned and in tip-top shape. But been driven; driven about sports, about drama and more importantly, she had an undeniable look of even about being sick. It takes a certain mindset to get determination and spoke with confi dence. through anything," The challenge began with a lengthy uphill run While the MTV experience may stand out as one of through a winding trail. At the end of the trail contestants Weatherton's most notable accomplishments, it does fi nd four gigantic puzzle pieces that have to be carried not defi ne her. To both young and old alike, she is a to another location one by one and put together shining example of what can happen when, despite according to color. For a moment Weatherton becomes obstacles, you embrace the possibilities. Hers is a story frustrated with the puzzle but seems unfazed by the about having faith, about staying positive and about physical demands of this challenge. When the puzzle is surrounding yourself with people who believe in you. completed, contestants run back down the trail where Weatherton lists her parents as her heroes because, they encounter a teeter-totter that they must balance on she writes, "They never gave up on me, have always evenly for a given amount of time. Finally, contestants been there for me and most of all, they always love me." run to the fi nish line to collect their fl ag which signals But the most revealing post on her page by far, is her when each has completed all the challenges. So which favorite saying which reads; one thing you can be sure girl won? Weatherton, of course.
of in life is change, don't let it hold you back, learn She could have continued to be on more Road something from it and grow through it. It speaks volumes Rules episodes but the general atmosphere on the show about Weatherton's rock-solid character and gives one presented too many issues that contradicted her newly the feeling that no matter what the future has in store for restored faith in Christianity. So she returned home this courageous young woman, she'll be ready.
Continent Diversion New Patient Guide The Phoenix Continent Urinary Diversions
similar to a normal urinary bladder, except they are not Understanding and Managing connected to the urethra. Instead, they are connected an Internal Pouch to an abdominal stoma located on the abdomen. These pouches are emptied by patient self-catheterization By Roni Olsen, Metro Denver UOAA through the stoma. The most common internal continent urinary pouches include the Kock pouch and During the second revision of my husband Ben's ileal the Indiana pouch and several variations, including the conduit, it was removed and replaced with an internal Mainz, Miami, Florida, Studer and Mitrofanoff pouches. continent Kock pouch with an abdominal stoma. With gritty determination, he fought his way back to health. Kock Pouches
Now 74, he continues to enjoy a busy and physically The Kock continent urinary pouch (pronounced active lifestyle.
"coke") is made from approximately two feet of ileum. As a result, we learned a great deal about urostomies A valve is created at each end of the pouch. The ureters in general and the pros and cons of the three different are connected to the internal valve which prevents refl ux types of urinary diversions: an ileal conduit that requires to the kidneys and the end of the other valve is brought an external appliance, an internal continent Kock to the abdominal surface to form a small continent pouch that requires convenient catheterization through stoma. The Kock pouch is emptied by inserting a fl exible an abdominal stoma, and the internal continent pouch/ silicone catheter with a coude' tip (‘elbow' or angled neobladder that is reconnected to the urethra to provide tip) into the stoma four to eight times a day. near-normal urination. We also learned a urinary diversion provides a Indiana Pouch
second chance at life for those whose urinary bladders The Indiana-type pouches are easier to construct must be removed. Understanding the critical role of than the Kock pouch, but they hold a smaller volume ostomy surgery is essential to both the physical and of urine. Typically, segments of both small and large psychological adjustment to the altered body function intestine are used to form these pouches and usually the and diminished self-esteem that routinely accompany ileo-cecal valve (the valve between the large and small most ostomy surgeries. intestine) becomes the continence valve. Stomas for As body strength is regained, dealing with an ostomy these pouches are frequently placed in the bellybutton, actually becomes routine, but the psychological and catheterizing is usually required every four to six adjustment often takes a much longer period. Some hours. In some cases, patients are also instructed to people will have the support of a caring family and/or irrigate their pouches to help remove mucus, generally friends to help them through the process, while others a few times a week. less fortunate may have to fi ght the uphill battle alone. Any feeling of fullness or discomfort in any of these Whatever the circumstance, each urostomate's attitude pouches, or feeling of cramping or nausea, usually is ultimately the key to life with a urinary diversion. An means the pouch needs to be emptied. Excessive ostomy need not permanently limit a person's activities, fl uid intake at any time may result in the need for abilities, interests or horizons. The urostomate in tune more frequent catheterization. Regardless of the time with life will understand that each day is to be treasured between catheterizations, these feelings should never and not wasted.
be ignored. Catheterization of the stoma is convenient, easy, painless and maintenance is minimal. Since they Internal Continent Pouches
don't leak, they don't require an external appliance and There are two types of internal continent urinary their stomas can be made almost fl ush with the skin. pouches (also called reservoirs): the internal pouch with an abdominal stoma and the internal pouch that is Catheterization of the
reconnected to the urethra (neobladder). These internal Internal Continent Pouch
continent urinary pouches with abdominal stomas are Techniques for catheterization will vary slightly 16 The Phoenix
Continent Diversion New Patient Guide splashing. Once urination is completed, the catheter is simply pulled back out through the stoma. Occasionally, mucus buildup may partially or completely block the catheter. Sometimes, a rotation of the catheter or slight abdominal grunt or two, or a cough, will push the mucus plug through the catheter and allow urine fl ow to continue. If not, the catheter should be rinsed under the tap until the mucus passes and then reinserted into the stoma. Always carry a clean, spare catheter. Also keep all supplies in carry-on luggage when traveling and do not leave supplies in a hot car or any other place that is overly warm. In most cases, a small, moisture-proof pad needs to be worn over the stoma to absorb normal stomal secretions. Left: Internal continent pouch. Right: neobladder. A third of a thin sanitary pad held in place with two pieces of half-inch wide micropore tape makes a because the shape and angle of the stoma or nipple satisfactory and economical cover. Catheters fi t easily valve and depth of the abdominal wall varys from patient into sandwich bags as well as a pocket, purse, backpack, to patient. Fortunately, a wide variety of catheters are or glove compartment and at least one clean catheter available to accommodate these differences. Usually, should always be available. the patient is taught to catheterize the pouch in both Catheter cleaning is also not a sterile procedure. a sitting and standing position and is also encouraged Recommendations for cleaning vary from rinsing with to relax the abdomen. In either case, relaxation of the a soapy water solution to soaking in Betadine (very abdomen is far easier said than done during the fi rst messy) or soaking in a solution of four parts Hibiclens few weeks of self-catheterization. Although the process to one part water. Whichever procedure is used, the of poking a drain tube into the abdomen seems like catheters should be thoroughly rinsed inside and out an outrageously bizarre task at fi rst, catheterization is with tap water, then air dried before re-use. If traveling actually simple, quick and painless. It rather quickly abroad, bottled water is advised. Again, ETs can provide becomes routine. helpful information on catheterization and equipment Catheterization of the continent pouch is not a sterile procedure; at best it is only as clean as the local tap water. The procedure works best when two hands Continent Bladder Replacements
are used to hold and manipulate the catheter; therefore, For men and women who meet special criteria, the hands should be washed with soap and water prior. By T-pouch orthotopic bladder (similar to the Kock pouch), holding the fl exible catheter fi rmly near the tip, it can and the neobladder (Studer and variations) are internal usually be gently inserted into the stoma. Catheterization pouches that can actually be reconnected to the urethra does not require force, but sometimes a slight push, twist to provide near-normal urination. Patients may require or a combination of the two is needed. Even though lengthy rehabilitation and exercise to strengthen and the mucosal lining of the stoma continuously exudes a retrain the muscles and nerves that control the urinary small amount of mucus, additional lubrication may be sphincter. The majority fi nd continence is easily needed for catheterization. maintained during the daytime, but may need to wear a If so, the catheter tip can be moistened with tap water pad as a safety measure. or a small amount of a water-soluble jelly. Non-water Nighttime incontinence, however, remains a soluble products should never be used. After the tip of the problem for many, and some never achieve 100% catheter slides into the stoma and on through the nipple continence. Some people wear Depends, and some valve into the pouch, the outside end of the catheter get up a few times during the night to urinate. Some should be slowly turned downward and positioned to men use a penile sheath (also called condom catheter) drain the urine into the toilet or a convenient container. with a tube connected to a collection jug. In some A few squares of toilet paper in the toilet helps minimize cases, hypercontinence (inability to urinate) is an issue Continent Diversion New Patient Guide The Phoenix and those individuals have to catheterize through recovery. Extensive antibiotic therapy is not the solution their urethras to empty their neobladders. The bladder to recurrent kidney infections and may result in a cancer website, http://blcwebcafe.org, has several resistant strain of bacteria. members with neobladders. Their experiences range Recurrent kidney infections warrant further from total continence to hypercontinence. They are a examination, usually an IVP and/or loop-o-gram, or knowledgeable and excellent source for information pouch-o-gram, to determine whether or not there is an and tips on dealing with neobladders. obstruction or stricture that needs correction.
Urostomates need to be aware that any symptoms of Check with the UOAA for names of ostomy nurses kidney infection (chills, fever, fl ank pain, dehydration, and for members with urostomies. Local UOAA unusual fatigue, change in the volume, color or odor support groups should have the names of nurses in their of urinary output, or a change in the amount or color communities. National UOAA at 800-826-0826 can of mucus) require immediate medical attention. An supply the name and number for all support groups.
infected kidney is not only excruciatingly painful, but Finding an ET or wound, ostomy and continence may result in permanently impaired kidney function. nurse with good urinary diversion experience may take Early oral antibiotic treatment may control a some effort. See the website www.wocn.org, click on minor kidney infection. Urine cultures and blood services and resources, click on referrals, then click on tests help determine the specifi c bacteria involved, consultant registry for a list of names.
so the appropriate antibiotic can be given. If stronger, Another excellent place to fi nd support is through intravenous antibiotics are needed, this generally means the WebCafe's free email list/support group for bladder a few days in the hospital as well as a few weeks for cancer warriors, see: http://blcwebcafe.org. Got guts? Gear up! JOIN THE RIDE FOR CROHN'S AND COLITIS Join Get Your Guts in Gear (GYGIG) for a 3-day experience that raises awareness and funds for people with Crohn's disease, ulcerative colitis, or people who have had ostomy surgery. GYGIG's 210-mile rides are fully supported, scenic, and designed to create an empowering community—gear up for an unforgettable adventure! To ride, crew, or volunteer, call 1.866.9iGOTGUTS (1.866.944.6848) or visit www.IBDride.org.
June 12-14, 2009New York's Hudson River Valley August 7-9, 2009Pacifi c Northwest/Seattle area October 2-4, 2009Midwest/northern Illinois and southern Wisconsin Nationally sponsored by: Advocacy for Patients
with Chronic Illness, Inc.
2009 Get Your Guts in Gear, Inc. All rights reserved.
18 The Phoenix
Continent Diversion New Patient Guide continued from page 10 2. Bowel obstruction – nausea, usually a great sense of relief after vomiting, bloated and unable to these procedures and even elation at due to inadequate length of the pass stool. Early in recovery, this can having been given a second chance small intestine. In these unusual be due to food not chewed properly. at life because the patient's perceived situations, a continent ileostomy Later, it is caused by adhesions health has greatly improved.
can be immediately created so the that kink the small intestines. The The need for surgery and the patient does not have to undergo majority of obstruction can be choice of operation are major a subsequent operation or have an resolved without surgery.
decisions. Patients are encouraged unexpected permanent ileostomy. 3. Pelvic infection – fever, chills, to learn as much as possible about Those with other medical lack of energy. The cause is a result their disease and the treatment conditions that make anesthesia of a leak where the bowel is newly and surgery excessively risky or connected. This occurs in about 6% have known small bowel Crohn's of patients and can be treated with References and Additional
disease are not considered viable antibiotics or by placing a drain in the site that is infected.
1. Gordon, Phillip : Principles 4. Stenosis – incomplete and Practice of surgery for the colon, emptying of the bowel or frequent, rectum, and Anus 2nd Edition1999, Immediately post-operatively, it urgent bowel movements. It is pp 860 - 877.
is common to experience urgency, rarely a signifi cant problem and 2. Cohen, Jeffery Md Et al, frequency and slight bowel can resolve by gentle dilation of Disease of Colon & Rectum, incontinence. Once the pouch has the anastomosis digitally or with Practice Parameters for the Surgical healed and had a chance to enlarge, specialized dilators. Treatment of Ulcerative Colitis, 48 approximately three to eight bowel 2005, pp 1997 -2009.
movements a day can be expected. 3. Kock, Nils M.D. Intra- The average is four to six times a Patient satisfaction and quality abdominal reservoir in Patients with day. There are very few dietary or of life scores with ileal internal Permanent Ileostomy Arch Surg reservoir surgery have been high. As 1969;99 pp 223-31.
the operations continue to evolve, 4. Barnett, WO Current Pros and Cons
patients are also having fewer experiences with the continent The main advantage of an complications and better function intestinal reservoir. Surg Gynecol ileoanal pouch is the ability to over the long term. Many of the Obstet. 1989; 168 pp 1-5.
evacuate stool in the usual fashion problems experienced early in the 5. Fleshner PR, Schoetz DJ. through the anus. There is no need development of these procedures Surgical management of ulcerative for supplies or catheters.
have been greatly reduced or colitis. In Wolff BG, Fleshman JW, Some patients experience "butt Beck DE, Pemberton JH, Wexner SD burn" after surgery. This is due to Psychosocial adjustment to the (eds). ASCRS Textbook of Colorectal high stool frequency and slight reservoirs depends on many things, Surgery. Springer-Verlag, New York. incontinence. This subsides after the such as whether complications 2007:567-583.
initial adjustment period. Like the occur, the ability to resume a 6. Castillo E, Thomassie LM, continent ileostomy, pouchitis is the normal lifestyle and the expertise Margolin DA, Whitlow CW, most common complication. Bowel of the health care team in providing Malcolm J, Beck DE. Continent obstruction, pelvic infection, fi stula routine care, education and ileostomy: Current Experience. Dis and stenosis are also complications emotional support in managing any Colon Rectum 2004;47:629. Dis of this surgery.
complications that may develop. Colon Rectum. 2005 ;48 :1263-68.
The ability to return to a normal, 7. Rolstad, Bonnie Sue RN healthy life without an external BA CWOCN, Ileoanal Reservoir: 1. Pouchitis – urgency, frequency, appliance or without urgency and Current Management, Distributed painful straining, bleeding and rectal bleeding from ulcerative by the Research Foundation of the incontinence. See continent colitis, can help achieve a sense American Society of Colon and ileostomy for treatment options.
of emotional well-being. There is Rectal Surgeons. 2004.
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