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  3. Ileoanal Anastomosis

Ileoanal anastomosis

Definition

Ileoanal anastomosis is a surgical procedure in which the large intestine is bypassed and the lower portion of the small intestine is directly attached to the anal canal. It is also called an ileal pouch-anal anastomosis.


Purpose

An ileoanal anastomosis is an invasive procedure performed in patients who have not responded to more conservative treatments. The small intestine is composed of three major sections: the duodenum, which is the upper portion into which the stomach empties; the jejunum, which is the middle portion; and the ileum. The ileum is the last portion of the small intestine and empties into the large intestine. The large intestine is composed of the colon, where stool is formed, and the rectum, which empties to the outside of the body through the anal canal.

Surgical removal of the bowel is usually a procedure of last resort for a patient who has not responded to less invasive medical therapies. For example, many patients with ulcerative colitis, an inflammatory condition of the colon and rectum, can be treated by medications or dietary changes that control the symptoms of the disease. For patients who fail to respond to these approaches, however, the creation of an ileoanal anastomosis removes most or all of the diseased tissue. Certain types of colon cancer and a condition called familial adenomatous polyposis, or FAP, in which the inner lining of the colon becomes covered with abnormal growths, may also be treated with ileoanal anastomosis.


Demographics

Most patients—more than 85%—who undergo an ileoanal anastomosis are being treated for ulcerative colitis; familial adenomatous polyposis is the next most common condition requiring the surgery. The average age of patients at surgery is 35 years, and the majority of patients are male.


Description

A surgical anastomosis is the connection of two cut or separate tubular structures to make a continuous channel. To perform an ileoanal anastomosis, the surgeon detaches the ileum from the colon and the anal canal from the rectum. He or she then creates a pouch-like structure from ileal tissue to act as a rectum and connects it directly to the anal canal. This procedure offers distinct advantages over a conventional ileostomy , a procedure in which the ileum is connected to the abdominal wall. A conventional ileostomy leaves the patient incontinent (i.e., unable to control the emptying of waste from the body) and unable to have normal bowel movements. Instead, the patient's waste is excreted through an opening in the abdominal wall into a bag. An ileoanal anastomosis, however, removes the diseased large intestine while allowing the patient to pass stool normally without the need of a permanent ileostomy.

An ileoanal anastomosis is usually completed in two separate surgeries. During the first operation, the surgeon makes a vertical incision through the patient's abdominal wall and removes the colon. This procedure is called a colectomy. The inner lining of the rectum is also removed in a procedure called a mucosal proctectomy. The muscles of the rectum and anus are left in place so that the patient will not be incontinent. Next, the surgeon makes a pouch by stapling sections of the small intestine together with surgical staples. The pouch may be J-, W-, or S-shaped, and acts as reservoir for waste (as the rectum does) to decrease the frequency of the patient's bowel movements. Once the pouch is constructed, it is connected to the anal canal to form the anastomosis. To allow the anastomosis time to heal before stool begins to pass through, the surgeon creates a temporary "loop" ileostomy. The surgeon then makes a small incision through the abdominal wall and brings a loop of the small intestine through the incision and sutures it to the skin. Waste then exits the body through this opening, which is called a stoma, and collects in a bag attached to the outside of the abdomen. In an emergency situation, the surgeon may perform the colectomy and ileostomy during one operation, and create the ileal pouch during another.

In the second operation, the surgeon closes the ileostomy, thus restoring the patient's ability to defecate in the normal manner. This second procedure generally takes place two to three months after the original surgery. The surgeon detaches the ileum from the stoma and attaches it to the newly created pouch. A continuous channel then

In an ileoanal anastomosis, a pouch is used to create a large section of bowel whose function replaces that of the large intestine, or colon. In this operation, the ileum (part of the small intestine) is shaped into a W-shaped pouch (A). An incision is made (B) to open up the shape and create the larger pouch, which is left open at one end and brought through the rectal area (C). The bottom of the pouch acts as a new rectum, and a new anus is fashioned (D). (Illustration by GGS Inc.)
In an ileoanal anastomosis, a pouch is used to create a large section of bowel whose function replaces that of the large intestine, or colon. In this operation, the ileum (part of the small intestine) is shaped into a W-shaped pouch (A). An incision is made (B) to open up the shape and create the larger pouch, which is left open at one end and brought through the rectal area (C). The bottom of the pouch acts as a new rectum, and a new anus is fashioned (D). (
Illustration by GGS Inc.
)
runs from the small intestine through the ileal pouch and anal canal to the outside of the body. In some instances, the surgeon may decide to combine the two surgeries into one operation without creating a temporary ileostomy.


Diagnosis/Preparation

Because an ileoanal anastomosis is a procedure that is done after a patient has failed to respond to other therapies, the patient's condition has been diagnosed by the time the doctor suggests this surgery.

The patient meets with the operating physician prior to surgery to discuss the details of the surgery and receive instructions on pre- and post-operative care. Immediately before the operation, an intravenous (IV) line is placed in the patient's arm to administer fluid and medications, and the patient is given a bowel preparation to cleanse the bowel for surgery. The location of the stoma is marked on the skin so that it is placed away from bones, abdominal folds, and scars.


Aftercare

Following surgery, the staff will instruct the patient in the care of the stoma, placement of the ileostomy bag, and necessary changes regarding diet and lifestyle. Visits with an enterostomal therapist (ET) or a support group for individuals with ostomies may be recommended to help the patient adjust to living with a stoma. After the anastomosis has healed, which usually takes about two to three months, the ileostomy can then be closed. A dietician may suggest permanent changes in the patient's diet to minimize gas and diarrhea.


Risks

Risks associated with any surgery that involves opening the abdomen include excessive bleeding, infection, and complications due to general anesthesia. Specific complications following an ileoanal anastomosis include leakage of stool, anal stenosis (narrowing of the anus), pouchitis (inflammation of the ileal pouch), and pouch failure. Patients who have received a temporary ileostomy may experience obstruction (blockage) of the stoma, stomal prolapse (protrusion of the ileum through the stoma), or a rash or skin irritation around the stoma.


Normal results

After ileoanal anastomosis, patients will usually experience between four and nine bowel movements during the day and one at night; this frequency generally decreases over time. Because of the nature of the surgery, persons with an ileoanal anastomosis retain the ability to control their bowel movements. They can refrain from defecating for extended periods of time, an advantage not afforded by a conventional ileostomy. One study found that 97% of patients were satisfied with the results of the surgery and would recommend it to others with similar disorders.

Morbidity and mortality rates

The overall rate of complications associated with ileoanal anastomosis is approximately 10%. Between 10% and 15% of patients will experience at least one episode of pouchitis, and 10–20% will develop postsurgical pelvic or wound infections. The rate of anastomosis failure requiring the creation of a permanent ileostomy is approximately 5–10%.


Alternatives

An ileostomy is a surgical alternative for patients who are not good candidates for an ileoanal anastomosis. If the patient wishes to retain continence, the surgeon may perform a continent ileostomy. Portions of the small intestine are used to form a pouch and valve; these are then directly attached to the abdominal wall skin to form a stoma. Waste collects inside the internal pouch and is expelled by insertion of a soft, flexible tube through the stoma several times a day.


Resources

books

Pemberton, John H., and Sidney F. Phillips. "Ileostomy and Its Alternatives." In Sleisenger and Fordtran's Gastrointestinal and Liver Disease , 7th ed. Philadelphia: Elsevier Science, 2002.

periodicals

Becker, James M. "Surgical Therapy for Ulcerative Colitis and Crohn's Disease." Gastroenterology Clinics of North America 28 (June 1, 1999): 371-90.

organizations

Crohn's and Colitis Foundation of America. 386 Park Ave. S., 17th Floor, New York, NY 10016. (800) 932-2423. http://www.ccfa.org .

United Ostomy Association, Inc. 19772 MacArthur Blvd., Suite 200, Irvine, CA 92612-2405. (800) 826-0826. http://www.uoa.org .


other

Hurst, Roger D. "Surgical Treatment of Ulcerative Colitis." Crohn's and Colitis Foundation of America. [cited May 1, 2003]. http://www.ccfa.org/medcentral/library/surgery/ucsurg.htm .


Stephanie Dionne Sherk

WHO PERFORMS THE PROCEDURE AND WHERE IS IT PERFORMED?

Ileoanal anastomoses are usually performed in hospital operating rooms. They may be performed by a general surgeon, a colorectal surgeon (a medical doctor who focuses on diseases of the colon, rectum, and anus), or a gastrointestinal surgeon (a medical doctor who focuses on diseases of the gastrointestinal system).

QUESTIONS TO ASK THE DOCTOR

User Contributions:

1
sandra kibler
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I had an ilioanal anastomosis with J pouch done 19 years ago. I am still taking flagle for pouchitis. I have weaned myself down to one every third day. Beyond that I develop diarrhea. I also have autoimmune liver disease. I would like to know if it is safe to take this for years and years or is something new out there that will cure pouchitis? I have to consider the liver disease also.
2
Andy
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I had a total colectomy performed when I was 29, after suffering from Ulcerative Colitis for 7 years. My surgeries were done in three steps over a six month period, and now I am disease free (and can eat anything I want). The only negative (and a very minor one at that, considering all that I've been through), is that I now have what seems to be permanant case of Pouchitis. The new information I'd like to add to this topic is that, for those who are in my situation, there are Probiotic drinks on the market for this problem. The theory is that the introduction of live bacteria helps the body in it's fight against the infection/inflammation of the J Pouch. For those who haven't had much luck with Flagyl (which I didn't), try these over the counter prodcuts.
3
Angie
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I had a total colectomy, it was an emergency surgery due to my colon rupturing. I had only had ulcerative colitis for a couple of months, which was long enough. I had very painful diareha with alot of blood and mucus. I am scheduled to talk to a surgeon in June, I just have some concerns about this Pouchitis. Right now I have the iliostomy and things so far have been going well, except for some skin iritation.
4
Kathy Rudis
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I had an iloeanal anastomis 17 months ago. I was going to the washroom between 20-27 times a day. The doctor placed me on endocort (5 a day,) plus (8-11 )imodium, and if necessary, 1000 mg of Cipro each day. Now I am going about 10 times a day it is not great but it works. Any ideas out there that might work better? HELP!!!!! Thanks, Kathy
5
Darryl Brooks
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I had an ileoanal anastomosis 15 years ago in March. I have battled pouchitis, fissures, and fistulas ever since but it is much more tolerable than the colitis. After a flare-up this summer, I started drinking Ensure Plus once a day as a snack (to put weight back on but also for the nutrition) and eliminated cokes from my diet altogether. I replaced the daily cokes with Lipton Green Tea for just about every meal (or water). Since I made this change in my diet, I have done the best I ever have since my disease onset. That is saying a lot since it was 15 years ago + 2 years of pre-surgery illness. My stools firmed up and frequency decreased to 4-5 times a day plus I'm able to sleep all night without being disturbed. I hope it continues but I wanted to share. Maybe it will work for someone else.
6
vic
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i had ileal anal anastamosis in 1987. I had horrible pouchitis until 1989 when i went to mayo clinic and was told i would have to empty the puouch with a tube and irrigate it for the rest of my life. 21 years later i still struggle with it...would be interested to know if anyone has had the same result
7
Holly W
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I have had the j pouch since 1988. I have never had pouchitis.I am cautious with my diet.I get scoped yearly by a surgeon.
I am very healthy.I take no supplements or vitamins.
I had UC for 13 years and took prednisone. No problems at all.
I try to help others get their quality of life back and I am an advocate for my son who had a failed j pouch and now has a continent ostomy.jpouch.org has great information to help.
8
George Langston
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I had j-pouch surgery in 1997 after 20 years of UC. It has been a great relief to be disease-free. I go to the CR surgeon for yearly scopes, which are fairly benign given the severity of the condition. Let's face it, with a radical deep-pelvic procedure like a colectomy, it's just not realistic to expect that everything's going to be like it used to be. But given the amount of freedom to do anything, eat anything, go anywhere I want, it's been surprisingly free of complications. I have had a number of perirectal abcesses which required surgical draining since the original operation, and a hernia repair which was a direct result of the original abdominal wall incision and subsequent exercise (i.e., crunches). It was repaired with an organic mesh, and has been very satisfactory. I still snow ski, run 20 mi/wk, do 2,000 pushups/crunches/wk, go on extensive business travel domestically and overseas, have lots of social interaction, romance, etc. One thing that I do sometimes when I'm going to be out for an extended period of time is cut down on eating. I have a tendency to have what the surgeons call a "colicky" response to eating (need to go to the bathroom after eating). If I'm going to be out for extended periods, it's better for me to just wait until I get back to the house to eat. This may seem like a lot to ask, but after 12 years of figuring things out, this seems to work fairly well. I'd rather be hungry and not have to use public bathrooms and interrupt social engagements than be full. Anyway, I'd be glad to hear from you and give you my experience. Please e-mail any time.
9
Melanie
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My partner had an Ileoanal anastomosis performed for ulcerative colitis. I work in the medical field so I have some understanding of it from a clinical view point and try to make him understand that it doesn't freak me out. He has accidently dirtied the sheets when I stayed over his place one night and I kinda pretended I was all sleepy and had no idea why he was changing the sheets.. He didn't buy it and we just hugged later in the morning and never spoke of it again. My partner is also insulin diabetic and so he HAS to eat frequently, which means he just has to visit the toilet frequently. It hasn't stopped us doing anything! He skates, surfs and snowboards. We love music shows and both have young children [ranging from 3 - 9] from previous marriages that need lots of outdoor activities, which must make him nervous if we aren't close to a bathroom. My partner is very private and wont discuss his medical issues very openly with me. I can often hear noises similar to that of loose motions when he goes to the toliet. And I think it embarrases him but I don't care and it makes no difference to how I feel about him.
He has confided in me that he has sperm stored.
What I wanted to ask is why he would have sperm stored? Is this related to the diabetes or the ulcerative colitis? Did anyone else have this offered or suggested to them prior to surgery?

Any advice would be awesome. melk@alpenglow.com.au
10
mick casey
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is Anastomosis coverd under the DDA i need to know this to help a member of my union who has this and has just under gone surgery.they have been going through the diciplinary procedure because of her illness and i want to protect her from further incidents concerning this,
11
Angie
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I had my j pouch surgery 6-7-07, I have noticed on most sites that alot of people suffer with pouchitis and mention that they eat whatever they want. I have never had pouchitis and keep myself on a strict diet. Nothing with seeds, skin, nothing spicy, no raw veggie's, no red meat, no fibers, limited chocolate, I drink only ice tea, hot tea or water. I know the Dr's tell everyone they can eat what they want, but I believe you really can't. I hope this helps others. Try changing your diet, I'm sure it won't happen over night, but give it a shot.
Good luck
Angie
12
Lisa
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I had an ileoanal anastomosis almost 6 years ago. I had suffered from Ulcerative Colitis for 5 years prior with no relief from medications or treatments. The surgery was a complete cure for me. I had one bout of pouchitis shortly after my re-connect, but it cleared with flagyll and cipro. I now take lomotil, 2.5 mg pills, two of them 3-4 times a day and it keeps my bowel movements down to 4-6 times a day, and usually once at night. I eat whatever with no problems. Is anyone else on lomotil?
13
Julie
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I had an Ileoanal anastomosis with J-pouch in 1994. I had UC for 2 years prior to surgery, and was not responding to any meds. To this day, I am thankful to say that I have been healthy ever since!
14
Curtis
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This is to the poster George Langston. I saw that you offered for people to email you at any time, but for the life of me I can't find your contact info or figure out how to use this site to reply to other posters. I am a very active athlete and have been suffering from Colitis for about 5 years. I've been on just about every medication out there, and am seriously considering surgery as soon as possible. I'd like to talk with you about your quality of life and ability to compete and exercise post surgery.

Please email or contact me if you don't mind. I also welcome others' instructions about how to contact George. Thanks!
15
Nigel
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I had my colon removed in dec 99, my pouch created and put straight to use in mar 00. I am now 42 and only go on sites like this when feeling down and sorry for myself. I have never had solid stools, but when well have very good control. I too have had a hernia repaired in the stomach area, I too do not eat if i am going out for any period of time. I play cricket which lasts about 6 hours overall, i have a bacon sandwich 3-4hrs before playing, and then wait till the end to eat again. I hardly ever urinate, except when on the beer, but find i need to sit down "just in case". On a good day i go to the toilet 3-4 times, I am currently experiencing my 3rd bout of pouchitis, and feel like i need to go all the time. I take no medication (except when experiencing pouchitis), i eat whatever i want when i want, but have learnt to avoid beans, mushy peas, mushrooms, popcorn, and coconut. The worst thing is not being able to break wind without being at the toilet for fear of following through, so i have learnt to hold it in.

If you would like any more info feel free to email joconloz@hotmail.com
16
tk
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My husband has had a pouch now for about 10 years. Here in the last 3 yrs he has constant pouchitis. He takes flagyl twice a day. It has gotten to the point where he is constantly in pain and has started developing cysts externally. I know that 90% of the problem is his diet.
We have only been Married now for about 5 years and when I talk about his eating habits he tells me he needs to stay away from raw vegatables and fruit, and seeds. What I wnat to know is what other foods we need to avoid. Are there spices that I shouldn't use. How should I cook our food, and any other information that could be of use.
17
Lisa
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Hello.

I am looking for some answers. I had rectal cancer. I had surgery to remove my rectom and reconstruct my colon. I got an infection after surgery which formed pouch full of fluid that needed to be drained. In Nov it will be 2 years. I have pain in my lower back, both sides of my butt, hips,and down the sides of my upper legs. Dr's tried to blame Chemo and radiation for this pain. I believe it is inflamation and or nerve damage. I take a nerve pain killer and lots and lots of ibprophen a few times a day. Now this wierd pouch is still not healed up, is inflammed and red. Could this be the cause of my pain?? How do I fix this problem? Both side of my pain areas are affected at the same time..chronic, constant aching/pain. I am cancer free now, but this pain is a constant reminder of my horrible fight with cancer.. Help.. any ideas?
18
Michelle
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Hi Lisa n all
I had the same problem after my surgery with my pouch filling with fluid, I was taken back to theatre 10 days post op, they drained 2 pints out in theatre and placed a drain inside me to drain the rest away. They sent some of the fluid away for testing and it came back that I had an infection called "esbl" in my pouch which I believe is a form of e-coli. I am pre takedown and am now suffering from pouchitis, again they have taken a sample and sent it away for testing. I only found this out yesterday after having an examination under anaesthetic due to suspected recto vaginal fistula (good news they didnt find one!). Has anyone had pouchitis pre takedown? Some sites say you cannot get it, if so what else could it be? My surgeries where for UC, although originally diagnosed with crohns, post colon removal testing came back UC.
Any advice etc, would be great.
Thanks
Michelle
19
Jenn
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I had a 2-step (loop ostomy to j-pouch) surgery. The day they hooked me back up to my anastomosis and the pouch filled with stool, I felt agonizing pain in my buttock and down the inside of my leg on my right side. It felt like I had a little pocket or something where any pressure made me feel like there was a large ball in that area because the nerves were damaged. Turns out that I have nerve damage called pudendal neuralgia. It can be excruciating at times. I also cannot seem to get my BMs down to under 12 times a day and have bouts of pouchitsi a few times a year where I go 24+ times a day and I end up covered in fissures and raw and bleeding. I would consider going back to an ostomy, however, my skin is so sensitive to every wafer/appliance out there that I ended up just laying on towels to catch my hi output ostomy because my skin around it was raw and bleeding and the wafer wouldn't stick. I have heard about a k-pouch option, but I am not sure if that is a good solution or not. I have no idea what to do about it but if anyone has a similar story or maybe some advice, I would love to hear it.
20
Becky
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I had total colectomy with ileoanal anastamosis in 1983 following UC that did not respond to meds after 5 yrs. I have had a normal life since then, giving birth in 1989 with no complications. I work full time, exercise and travel. I definitely benefit from avoiding sodas but generally eat whatever. If my skin becomes sore I apply maalox and then use a blow dryer and it heals quickly, this was a trick they suggested at the Mayo Clinic. I carry wipes and air freshener as i find it embarrassing to use public restrooms due to odor and noise. I am so happy to have had so many good years!!!
21
vivienne
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Ihad colectomy and ileonal anastomosis for constipation done feb 09. First it left me running to the toilet about 7 times a day,which i did not mind as i had been warned about this by my surgeon,who was brilliant. Now im finding discomfort and back to my usual struggle of going to the toilet. I was told i did not need to be on a special diet. Has anyone else got these symptoms after operation.

Please e.mail if you can. Thanks Viv.
22
Laura Tuider
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If someone already has an ileostomy can they have this procedure?
23
rita hughes
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I had a total colectomy, ileo-anal J-pouch surgery done in two stages in 1997/1998.
From the day I had my J-pouch I went to the loo 15-20 times a day. I took codeine phosphate, antibiotics etc. The codeine helped a little but seemed to give me stomach ache. In 2005 I started to get slow output but still frequency when the pouch would only empty a very small amount at a time. This made me very sore and I developed fissures. Then within one week the pouch suddenly stopped the output and I was in terrible pain. I was rushed to hospital, x-rayed, given a barium enema and sent home. This happened again 10 days later and again on three other occasions. Since that time in 2005 I have had to use a tube and irrigate at least twice a day, sometimes three. My surgeon says he cannot do anything about it. I could have an ileostomy but my skin becomes very sore and the loop will not stay one. I have also starting suffering with pain in the lower back, buttocks and down the side of both my legs. I cannot sit on a hard surface because the top of my legs and buttocks become painful. My doctor says I have some nerve damage.
24
Jana hopper
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I had my ileoanal anastomosis done in 2001-2002 at the age of 17 after years of suffering with UC. Mine was done in 3 steps as well, out if necessity not by choice. They found a grapefruit size cyst on my ovary and Fallopian tube during the second surgery and chose not to finish the pull through due to this. I was finally "connected" 3 months later. I was diagnosed 4 months after that last surgery with Celiac Disease. On top of having half my insides taken out I am very limited on what I can eat now. I'm 5' 7 and weigh 125 pounds. I just got over a bad pouchitis flare up as well. I was put on rifaximin (xifaxan) a new antibiotic that kicked in VERY fast, but unfortunately I seem to be noticing the effects in my hair (losing it by the handfuls) and in my scalp. I am on Align every day and a slow release iron supplement. I hate how many times I end up in the bathroom and how much I miss out on physically from being so dehydrated etc, but I know that it was necessary to take it out when they did. I had hamburger for a large intestine. The rifaximin was infinitely better than flagyl. I hope this helps you!
25
justagirl
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13 years ago I had ileoanal anastamosis surgery with J-pouch. I kept getting pouchitis and at my last pouchoscopy my doctor prescribed me low doses of Cipro and Flagel to take indefinitely. Taking this medications has basically changed my life. I sleep through the nite, I can go hours without finding a restroom, and I can eat a healthy, fruit/veggie/fiber filled diet without worry. Because I have other autoimmune issues (pyoderma gangrenosum), it's not surprising that I, like others, have permanent pouchitis. You can cure ulcerative colitis, but not always the immune dysfunction. With that said, I would always recommend the J-pouch to anyone with colitis. It's amazing to live without pain and fear of a flare up!
26
Cris
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Hello, i am 18 years, in a few weeks i will have an anastomoisis ileonanal. Currently, I have a colectomy. I want to know if people who have a ileonal anastomosis can be performed any physical activity like dancing hip hop and ballet, as I am a dancer. I also want to know if they can have have kids. thanks
27
lYNN
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I had an ileostomy 5/10/11, have had a peristomal hernia since, but otherwise feeling good, scheduled for a total colectomy and ileoanal anastamosis 9/20/11 with Dr. Chua at Mayo Rochester. This site has been great. Dr. Chua answered my questions by mail directly, but did not say I would be getting a J-pouch, so I assume I'm not getting that??? Another question she didn't answer very completely was returning to lifting. I'm a PT and job description includes lifting 50 pounds many times daily, also occasionally more. Does this seem realistic to you all who have had the procedure. I've been very fir until this hernia, but I'm assuming I'll heal from that with the take-down of the stoma.Thank you so much if you have relevant experiences to share! Lynn
28
Jil
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Answer to Cris (Dancer) I had Ulcerative Colitis onset at 14 yrs old. I trained as a dancer from very young, at 16 I danced a season for Disneyworld, at 18 I began majoring in classical dance at Butler University, at 19 I was hospitalized for a month. My colitis was out of control and had progressed to encompassed 100% of my large intestine, no remission for me. My options at that time in Indy were an ileostomy pouch (Dance with an appliance pouch? NO!), or a brand new surgery, Ileal "J" pouch-anal anastomosis. I would be the 4th person here to have it. So there was only 1 option in my mind for me. I had the surgery in 2 steps. The ileostomy pouch, after the 1st surgery, was quite bad. I had such a severe reaction to the adhesives that they did my ostomy takedown, 2nd surgery, a month earlier than planned.
It took me 6 months to care for myself alone and a year to get back to dancing. I never went back to College. I’d begun teaching (Stage Mothers!) when I received a special invite from Disney for the next season. I decided to go and out of a 3 month 3 show season. I danced 1 month, was hospitalized 2 weeks, off 2 more weeks, danced last month. I've never dance professionally again.
I’ve dealt with small bowel obstructions every 6 months or so, a 5-7 days 2in the hospital each episode. I’ve had 3 “ full open”adhesiolysis surgeries 11-14days in hospital each time, 2 “full open” small bowel resection surgeries,5 &7 resections respectively 17-23 days in hospital each episode.
No. I cannot eat anything I want. I eat plain yogurt, baby food, vanilla ice cream, white toast w butter, poached eggs , & mashed potatoes. That’s It! Anything else causes obstructions and or intolerable pain.
I have 11-12 toilette visits per day and 2-4 at night.
I cannot have children because of all the scar tissue. This is very common with this surgery.
Now 30+ years later I have intense pain from the scar tissue and nerve damage that I can’t work. I can paint for short periods. I put on my favorite music and let my paintbrush dance the canvas for my body that can’t dance the stage.
My best advice is be informed and objective in making your decision. Best Wishes Cris - Luv Jil
29
Cris
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Hi (Luv Jil). Although I have not been operated because they don't know wich kind of colitis I have. Also, I have the Ostomy and I can dance very well with it. I am very sorry your situation. But, I wanted to tell you that my doctor said I could have a normal life after this surgery, totally different to your current condition. The truth that makes me doubt. I hope that when I have this surgery, I can keep on dancing and having a normal life, God willing. In other way, where you were operated? In the United States? Thank you for answering, I hope you feel better. I appreciate your testimony.
30
Karen
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Hi Cris. I had a great experience with the surgery. It was in 1991 in the USA at the Mayo Clinic. I was 26 years old. At that time it was a two step procedure. One surgery in Oct, one in December. I had two boys, one in 2000 and 2003. The main complication for me was a bowel obstruction - which was fixed through surgery in 1996 and a hernia operation in 2003. Both surgeries well worth it ! It sounds like a lot but when you go through the UC, I had since age 10, its actually not bad at all. Also, no more risk of colon cancer!
Karen
31
Kim
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Hi - To Cris and anyone else - I am a dancer as well. I got colitis at age 14. Battled with it for many years until my j-pouch surgery in 1999 (at age 22). I am now 34. I'm fortunate that the surgery has been successful for me. For the past 12 years I've danced - I'm a modern dancer and I love athletic dance work. I've been dancing and teaching Pilates in NYC for the past 4 years. Pilates has been a great way to keep myself healthy. So I say to you, YES, you can dance, free of colitis. I hope you have the same success.

Because I'm now in my 30s I think about having kids. I will admit that I'm not dying to have children but I want to know if it's a good option for me. I will also admit that I'm worried about being pregnant and being in the care of a doctor that may want to cut me open (something I've become fearful of). In my investigation to figuring out my body (I'm an anatomy geek and believer in therapy outside of surgery and meds), I am trying to find out what is causing my menstrual cycle to last so long. I recently saw a craniosacral therapist whom I think is very good. She gently felt my belly and sensed that the scar tissue from the surgery is pulling my uterus away from center, where it should live. It's in a state of spasm and not functioning as it should, according to her. She also felt that overall my organs were adhered to one another, due to the scar tissue. She did some very gentle, subtle myofascial release (to loosen up the connective tissue). It didn't feel like she did much, although my belly did feel released/less tense. The next day, I had a rehearsal and I did some intense partnering work, where there was some pressure on my belly - but that's not out of the ordinary for me. But I realize now that's something I shouldn't have done. Something moved out of place, close to the surface, near my scar/belly button. It's been a month now and it still occasionally bothers me and causes some pain. Western doctors aren't worried about it and say it could be one of many things (scar tissue, residual staple, etc). They don't seem to think it's a hernia. Only an MRI could tell them for sure (and that's too $$ - I'm a modern dancer, we don't have proper healthcare benefits). In any case, whatever it is, it's inhibiting my dancing and I'm discouraged about it. I'm hoping the cransiosacral therapist can help me drop it back into place. But I have this feeling that I will have to figure out how to heal it on my own. If anyone has thoughts, please feel free to share.

Wishing good health to everyone!!
32
Heather
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Had Jpouch 20 years due to UC, recently have been diagnosed with episcleritis, liver damage and arthritis, all UC related. Have read before that complete removal of the J pouch and therefore the remaining rectum can alleviate the other related conditions, has anyone heard of this? Thanks everyone, Heather
33
Cris
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Heather:
I am not that sure, but i think the surgery just alleviate the symtomps but the UC is still on your body. Because is auotimmune. I have no the Jpouch yet, because the doctors think that i have the Chron's disease. What i' going to do is keep the rectum with the hope that some day there is a cure. You should think twice if you want to remove everything, because, if you do, you won't have any hopes, even if a cure becomes.Wishing you the best! Cris
34
Karen
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Hello,
I have had pelvic floor disfunction for close to 8 years now, with it getting increasingly worse. I am been to numerous drs. and also to the mayo clinic for pelvic floor retraining. I have had a enterocele repair and rectoplexy done. I am still struggling daily to go to the bathroom but none of the muscles cooperate in my rectum, they tighten instead of opening. I am scheduled in a week to meet w/a surgeon to discuss Ileoanal surgery. If he doesn't think that will work I will have an illeostomy. My concern is that it won't work due to the fact that my pelvic floor and rectum do not work properly. Can anyone give advice on weather this won't be an issue or not. After suffering for so long I want to make the right decision with surgery, since last one gave me nerve damage which is just complicating things worse. Thank you for any advice given.
35
Heather
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Hi Cris, the trouble is for me it seems that the remnant of rectum that was retained to construct the J pouch could be the problem as it will still have UC in it, tho it was stripped of the mucosa layer, apparently it can still be problematic. I really can't decide on the best way to go, my specialist is completely against removal, and has refused outright to do it, but then again he's not the one coming up with all this other stuff. My friend has had an awful time with her J pouch, after a few years has just had it removed, and after years of her specialist saying there was no crohns, now apparently there is!! I didn't like the illeostomy before, but I hate all this other stuff more!! Hope everything goes well for you, Heather
36
Cris
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Hi Heather,

Also, i have the UC active on my rectum. The difference is that i dont have the J-pouch because of it. I am being treated with supoositories and I feel much better. The choice is only yours, but, I insist you should try everything you can to not remove the rectum. That's what i'm doing, beacuse, I want a life without the illeostomy. I hope you feel better, Cris.
37
cazidoro
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hi i had colitis for almost 10 an had my jpouch two month ago and i ready had a tisue blockage this past week it was painful i wonder if this will keep happening if that its the case i would like to know what should i do to keep it from happening, i will get my takedown on this month i see many people have lots pouchitis i wonder if only the people who have them are the ones who coment here,i would like advice from somebody have control them very well, what should i do to asvoid them, thank you blessing
38
Terry
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My daughter had surgery ileoanal, but she is not able to pass the leak test so that she can have the next surgery (the take down). The doctor has not explained why this is occurring or how to fix. He went back in and did a surgery to fix the leak but was unable to find the leak, but did find blockage which he said he fixed. She had another leak test again and was told she did not pass. Any recomendations
39
Billie
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Hi all! I had an ileo-anal anastamosis done 20 years ago this May. It's been a long journey, but well worth the hassles of getting to this point. Sure, you will have many ups and downs along the way but in the end... you're still alive! I'm turning 40 this year and the doctor told me at 20 years old that without this surgery I would not live to see 21. There are certainly periods of depression that occur the first several years after, but I'm here to tell you that it does indeed get better! Keep your chin up and remind yourselves that better times are on their way!
40
Christine
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Have had Crohn's disease for 18 years, no surgeries. Right now doing great, except after 18 years of the disease I've developed strictures in the large bowel so bad they tell me I'm a walking time bomb. Just a matter of time before I blow. Has anyone heard of a J-Pouch being done for someone with Crohn's.
41
DAVID ALAN RICETTI
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I had ulcerative colitis/ chrons disease for awhile dealing with the bleeding stools, many trips to the toilet; I knew every mens room in the San Francisco Bay area. After my fifth colonoscopy somehow the week after I had intense pain and at that weeks apponitment I complained about it and said I had never had that much pain in my life; the hospital set me up for a ctscan 11 days later. When they got me into the ct scan machine I heard the staff calloing for assistance and I was shocked to see four big burly guys in hospital smocks and mask come in and put me on a big gurney to as they said " Get me double time into surgery" My insides were totally full of contamination where my colon had been perforated ! I awoke with a colostomy bag stuck around my brand new stoma . Most of the colon was removed. One year later ALL the rest was removed and the rectum and anus were taken out permanently closing my rear-end. Two years laer I am dealing with this new life that I'm thankful for. My big question is now that the rear-end is sewn shut how will I be able to have a digital rectal exam for prostate cancer now that I'm 59 and worried since all the men in my family have had prostate issues ? My psa score last test was normal but I'm having the hairs on my neck standing on end. I also went thru two malignant Melanoma surgeries with Clark level IV .Is there another way to check the prostate ?
42
Bridget
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I had this surgery 29 years ago. It was okay the first few years but then I started having contience issues. And a thrush like wound on my rectal area( yeast). I also had this wound on my stomach and the bag would fall off because the wound would weep. My question is after many years now i am having liver issues. I wonder if this is common in later stages after having the surgery?
43
Jean Craig
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My son had an ilial anal pullthrough done when he was 10yrs old. His colon was full of polyps. He has gotten along fine untill now. He is 30 year old now and has been experiencing alot of bleeding along with throbbing pain in his rectum. He had an endoscopy and a colonoscopy done that revealed part of his colon was left in and is full of very large polyps. He also has polyps lining part of his stomach. He then went to see a specialist who told him that has to be removed. My son unfortunately is unemployed right now. He doesn't have insurance and there isn't a GI doctor that will see him or a hospital that will take him. So now he suffers in pain.
44
Angela
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I have severe UC and have to decide between Remicade (temp. fix at best)and Ileoanal anastomosis surgery (perm.fix). I'm leaning toward surgery for many reasons. I'm currently on Prednisone (going on 4 months) and need to get off ASAP. I would like advice and "real" expectations for recovering and day-to-day expectations with this surgery.
45
Susie Smith
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I've just read right through these posts as I'm researching ileoanal and ileorectal anastomosis. I've had numerous surgeries, in particular colorectal surgeries due to weak connective tissue which caused megacolon and megarectum. These caused intense internal pressure and pain, in particular low back pain. It took over 20 years to get diagnosis (I was told I has IBS) and I've since had all the colon removed and part of the rectum. But the remaining upper rectum has distended and shifts around causing pressure and severe pain wherever it presses. As before, this causes same side migraine and leg / foot pain or extreme central low back pain. I've no doubt my nerves are damaged by abnormal internal pressure for decades (and thin skin caused by weak connective tissue). I'm now considering one more surgery to remove the distended rectum and I'm looking for options. It has amazed me to see three posts here where people report intense pain around the low back and buttocks linked to the bowel. Although this has been my main symptom all my adult life, I have never yet met a doctor or surgeon who accepts this link. 'There is no connection between the bowel and back pain' has echoed down the years from doctors. Even recently I was told at a large teaching hospital by the "Pelvic Pain Specialist" that there was no connection and he would not consider the bowel as significant to my pain. The bowel is for bowel doctors he said. Please will any of you suffering this link in your symptoms get in touch with me, I'm happy to be emailed. Perhaps together we can get more understanding from doctors and better care.
Thanks, Susie
46
nancy
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I had ileonanal anastomosis 21 years ago was only suppose to have ileostomy for three months and have it reversed it has never been done and now my surgeon wants me to have the rectum removed he just did a scope of the rectum and the biopsies were negative for cancer thank god my gi doctor did some testing and could find no disease in the small intestine and said I would be a good candidate for the reversal as far as he could tell but also said the surgeon would want to do further testing the moment I walked in to see this surgeon he to one look at the pathology report from my first surgery and said we really need to remove this stump and you do know that you are at a greater risk of getting cancer because you have had this surgery I have so many mixed emotions on all of this and am not sure what I should do if anyone could advise me on this please do so I have endured so many brick walls I am on remicade for my disease and get it every eight weeks and I am healthier state than when I had my first which was done because I had peritonitis so they rushed me to Cleveland clinic and because I had such battles of keeping insurance my temporary ileostomy has been with me for 21 yrs.
47
melodious
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my daughter who is just 6 years old had undergone a total colectomy, soave endorectal pull through and ileoanal anastomosis two weeks ago (she han an ileostomy 3 days after birth)...i feel down whenever she runs to the toilet (many times at daytime and night time) i even feel that she is better having the ileostomy because she can do and eat whatever she wants...but she really likes this operation to move her bowels normally like what others do... hoping that she can manage her condition and that her bowels will be lessened...
48
Joyce
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I had a operation for rectel turmour three weeks ago and have An illeostomy bag I was told I may have some bleeding from my bottom .
Well I have for two weeks now hou long is this going to last.
My stomach is so sore I'm so week and tired. Any answers out there please.
49
Susan
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My daughter had a colectomy and J-Pouch surgery with ileoanal anastomosis 17 years ago when she was seven years old. She suffered from Ulcerative Colitis for 4 years prior to the surgery. Her surgery was completed in three steps due to her young age and general health at time of surgery. Within one year, she had gained weight back to a normal level and luckily has lived a very normal life since without pain. She was a cheerleader and dancer during high school and majored in health and wellness in college. Her only noticeable modifications are avoiding foods like nuts & corn. She also keeps air freshener on hand. My question is this, as she enters her mid-twenties & contemplates marriage, what are the ramifications of pregnancy? I had to have caesarian sections, and am worried about her having to go through more surgeries. Has anyone had similar concerns?
50
Joe
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I had UC for over a year that didn't respond to any treatment. I was 24year's of age when I had this procedure (Ileoanal Anastomosis) in two parts July 1981 at St Luke's Hospital in San Antonio Texas by Dr. Raul Ramos which had trained at the Mayo Clinic for this procedure. I was his fourth patient. It wasn't a walk in the park by no means. Yeast was a big problem at times which was cleared up with women's products. I had several rectal fistula's drain and found sitting in very hot water done the same thing. I had problems with the anastomosis trying to close so I had to dilate my self with rectal dilatators for a couple of years that was painful. It took about three years learning what to eat and what not to. Pouchitis seems to be a once a year or twice a year thing Tetracycline was what they use to give me to clear it up and it was cheap. Now they offer Cipro which I take when needed since I cant take Flagyl. You will know when you have pouchitis pain and lots of loose stools. I found keeping the pouch clean by irrigating with warm water after a BM keeps the bottom clean and stops the irritation. Keep in mind when I had this surgery it was very new and many things have changed since then. I eat anything and everything . My wife a couple of years ago found out how to cook beans for me (Soaking then in water & baking soda over night). It had been 30 some years since I got to eat a big bowl of brown beans. The reason I'm posting this to help anyone with question or concerns about this procedure. I'm in my late 50's now. I have a yearly check up's.
51
Byron
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Hey guys im 24 and ive just had my total collectomy with the jpouch ileoanal anastamosis .Its been terrifying and lonley. Can i ask some rookie questions?

Did you guys get rectal leakage after the tubes were removed etc? How long did it go on for & is it supposed to hurt so much??
Im struggling with major nausea not even clopomin is helping anymore and its wrecking havoc on my weight. When i eat, a few bites feels like a full meal, when i swallow pills they gag up & i have to force them down with more water . Guys any tips & tricks on how to feel normal again during the first few weeks would be lifechanging really guys.
52
Andrew "Andy" Brorsen
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I had a complete colectomy with J-pouch shortly before 911 or 17 years ago at the age of 55. I had a partial colectomy in 1991 with a growth near the ileum. Looking back I estimate I dealt with ulcerative colitis (UC) for over 20 years. I'm sure the treatments for UC are much better today than the steroids used prior to 2011. The change in lifestyle was dramatic and I have experienced little side effects from the procedure. The four months with the ostomy bag before the "take down" surgery were probably the hardest mentally, for my wife, but it went well. Since that time, I have reduced the number of daily bowel movements from 5-8 plus one at night to about 3 or less during the daytime and occasionally one at night. If I eat too much in the evening, or forget to take famotidine after eating, then the constant growling and possibly diarrhea will begin. The only medication I take for controlling acidity level is famotidine (20mg tablets 2-3x's daily (aka "Pepcid"). I have been able to maintain my weight relatively well, but still should be 10-15 lbs lighter. (who doesn't want to lose weight) My overall health is fairly good. I have had subsequent surgery for removal of a polyp in the J-pouch, gallbladder (full of stones) and now have kidney stones in one kidney, but no kidney failure. Except for rare polyp, none of these conditions appear to be related to the 2011 surgery. I encourage anyone debating on having a permanent colostomy vs a J-pouch to read all you can about the internal pouch option. I still have occasional leakage overnight, but I believe that is from overeating or eating food that I know I can not digest. Stress still affects my digestion and I believe that has been a lifelong issue and possibly the root cause of UC. As the song goes "Don't worry - be happy"

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