Reversing Ileostomy: Personal Choice or Medical Necessity?

My Dr. told me that if he reversed mine I would have diarrhea 24/7. They had goofed and cut my sphincter too short but of course never told that to myself or family.

Welcome to the club. I have had 3 ops. Reversals and he would be right. I have had Crohn's disease for 20 years. Well, I thought great, I lasted 2 years then I looked like a skeleton. It was so bad... (at least I tried). But darling, you will be better with what you got. I have had 8 ops now. Something has happened to my back. I still am in agony since 2008. So I wished I could go back. Referred pain Crohn's/athritis. How the would I know enough? Don't do it, please. Good luck though. Cheers from Australia. X

While looking up several sites on ostomies, I found UOAA. On their discussion board, they have hundreds of successful reversal stories, and one with a link to Dr. Anderson's bowel solution. This has complete prescription and diet advice for both loose and hard stools post-op, as well as advice on bowel training and irrigating after reversal.

It was a great find for me since up until now, I had only found negative results.

I realize the real success rate depends on prior illness, area of ostomy, and existing damage from treatment, i.e. radiation.

1- Do the best research you can
2- Get a second opinion
3- Prepare ahead with weight loss if needed, Kegel exercises, bowel training with irrigation
4- And a great support system like this one.

Keeping y'all in prayer, Faith

In response to all the negative comments about J Pouches, I can only offer my own personal experience. I suffered with UC for 3 1/2 years before having a complete colectomy about 4 years ago. After a lot of experimenting with various appliance brands and types, I finally developed a "system" I was very happy with. When I had the colectomy, I told my surgeon I wanted to be left with the necessary anatomy for a possible reversal in the future. He wanted me to lose some weight before having the reversal as it would provide more space for the surgeons to work. With a male pelvis, which is smaller than a female, and extra weight, it would be problematical. Then last year, I developed a peristomal hernia that required a surgical repair. A couple of weeks before the surgery, my surgeon asked me if I wanted him to try for a J Pouch reversal "as long as we're in there"? At that moment, I honestly didn't know if I wanted to go through the additional surgery it would require, plus I was very happy with my "system". After a lot of thought, prayer, and a talk with a friend who's had a reversal, I decided to have it done. I had the J pouch reversal surgery last September and the "take down" reconnection surgery last January. After what I was told was a fairly typical recovery period, which was at times painful and sometimes with out-of-control bowel movements (20+/day), I have settled into a fairly predictable and manageable routine. I no longer suffer any pain, I normally have 6-8 BM's/day, and the consistency is most times that of thick oatmeal. I can report now that all the recovery is over, I have no regrets that I had it done. As a matter of fact, I love having a J Pouch and am very happy with it. I only have to see my surgeon once a year for follow-up. The only "problem" I have is swallowing too much air while eating/drinking. When I discussed what I thought was a lot of "gas" with my surgeon, he explained that it's mostly swallowed air.

I should also mention that I turned 65 years old last April, so you don't necessarily have to be young to have successful J Pouch surgery. I am convinced and feel strongly that the success of the surgery is directly proportional to the skill and quality of the surgical team doing the work. Also, a high-quality hospital minimizes your chance of complications and infection. My advice to anyone thinking of a reversal is the following: Seek out a high-quality surgeon who specializes in colon and rectal surgery. Don't let any other kind of surgeon convince you that they can do it as well as a specialist. Find a surgeon who operates out of a high-quality hospital, preferably in a large medical center. They are magnets for the best surgeons who do these surgeries all day, most days of the week. I had my work done at The Methodist Hospital in The Texas Medical Center in Houston. To find the best surgeon, talk with your other physicians whose judgment you trust, don't just ask your gastroenterologist. Talk with your ostomy nurse and people in your support group if you have one. I interviewed two surgeons before making my decision. Many doctors won't charge you if you make it clear that you are interviewing surgeons. Make sure you are comfortable with your selection. Don't just pick the one who's the most friendly or funniest; this has nothing to do with their skill level. Ask how many of these surgeries they've done and how many they do in a typical week. My particular surgeon, Dr. Randolph Bailey, writes many of the textbooks used to train other surgeons; he also lectures all over the world. This is a critically important decision, take your time, be thorough, and make the right decision. But also be mindful that every patient and every situation is unique; don't expect a miracle. Ask your surgeon to be honest with you about your odds for a successful outcome. Discuss it thoroughly with your surgeon and don't be afraid to ask questions. Pray about it and I wish you well.
Larry Wiggin

Thank you Bamatex - that was terrific sharing and in wonderful detail. I hope you continue with good results with your J-pouch. It gives others a sense of hope for alternatives. Your advice about finding the right surgeon is so right on. Ask the surgeon how many J-pouches or internal reservoirs he/she has done, and how many are done in that facility each year.

I know most of the people on this site are content/satisfied with having an ostomy especially in the cases of UC/Chrohns. But for those of us who had colorectal cancer, it can be a lot more difficult accepting an ostomy. That's because the American Cancer Society in its publications talk about how ostomies are "hardly ever needed anymore due to advances in surgery and treatment". I have had several people in my UOAA support confess they felt "like failures" having to "resort to the pouch."

I'm glad now I didn't have a J-pouch because the radiation proctitis that plagued me for so many years is much less frequent (cause I'm not using that outlet!). But like Bamatex, I also asked to keep my anal sphincter and rectal stump "just in case" some new type of procedure comes on the horizon. That's why my motto has become "never say never".

I had my colostomy reversed a few weeks ago and I feel great. The reason I had a colostomy in the first place was because the doctor perforated my colon during a colonoscopy. I had the bag for over four months and it really wasn't all that bad once I got used to it.

I was really apprehensive about getting the reversal after reading all the horror stories on this site. I sure am glad I decided to go through with it. It's good to be back to normal.

Well said, Larry. That was probably the best advice I've heard. You are so fortunate to be near a good hospital with great doctors. With emergency surgeries, we are sort of stuck with whoever is on call. And mine was a poor excuse for a GI. Now that I have the chance to find a better one, it seems every specialist thinks he's the best, and the doctors I ask for a referral only recommend doctors within their medical group. Once you find a large hospital with several specialists, is there a website that rates the best doctors in the group?

I am happy that your surgeries are behind you, and you can get on with living life to the fullest. South Texas is God's country, a great place to live.

Hello Susan,
In July 2009, I became unwell, ended up in the hospital, and after 3 days of tests and a CT scan, I had a colostomy (Hartmann's) which I didn't know about until I woke up in the high dependency unit. I'd never heard of the word 'stoma', so I had to be educated about it all. It wasn't easy to take it all in. I had peritonitis and diverticulitis as well. In January 2010, I was back in for a reversal, but ended up with an ileostomy (10 times worse). In July 2010, I was back in for a reversal again, and this time it worked, and I'm now 'bag-free'. It was all my own decision, and even my consultant said, "I wouldn't like a bag stuck to me for the rest of my life." So I'll say, GO FOR IT. What have you got to lose? I hope that this helps you and anyone else reading this to make up their mind.

XXX Stewart.

Hello Susan,
In July 2009, I became unwell, ended up in the hospital, and after 3 days of tests and a CT scan, I had a colostomy (Hartmann's) which I didn't know about until I woke up in the high dependency unit. I'd never heard of the word 'stoma', so I had to be educated about it all. It wasn't easy to take it all in. I had peritonitis and diverticulitis as well. In January 2010, I was back in for a reversal, but ended up with an ileostomy (10 times worse). In July 2010, I was back in for a reversal again, and this time it worked, and I'm now 'bag-free'. It was all my own decision, and even my consultant said, "I wouldn't like a bag stuck to me for the rest of my life." So I'll say, GO FOR IT. What have you got to lose? I hope that this helps you and anyone else reading this to make up their mind.

XXX Stewart.

I like you, Stewart, had a recent ileostomy reversal carried out which has been very successful. I also followed the same path as you with diverticulitis causing a perforated bowel and, as a result, a colostomy formation put in place. I think you will find the ileostomy you received was actually done to give your colon time to heal from the operation to rejoin it. Hence, you, like myself, had an ileostomy for a period until the colon heals satisfactorily well enough to be used again. The major difference between you and me and the majority of other people contemplating a reversal is that we had our colon intact when we had our procedures done, and this makes a massive difference in the possible outcome of said reversal.
When I knew that I had to have a reversal carried out, I did a lot of research which included reading many stories of what people had gone through following their surgeries. It only became clear to me after a time that the majority of the horror stories I had been reading were from people who had ileostomy reversals but did not have a functioning colon, and I could now totally understand why these issues were occurring. I consider myself to be extremely lucky that this was not the case for myself, and I understand completely the uncertainty that a reversal poses for many. I wish everyone in this position the best. Good luck.

Ken.

Well said............And you are dead on............Any prior history of chronic illness with regard to colon and intestinal issues and a non-functioning colon will only hamper a good reversal...........Simple issues and less immune-oriented (diverticulitis, a perforation by accident) will have better results....Michael

Well, it's nice to read personal experiences from both people who have had successful J pouch surgeries and those who are quite happy with the ostomy. At the moment, I have a J pouch. I've had it since March 2009. I have had nothing but problems. I've had 10 blood transfusions in the past 10 months, an iron infusion, and countless scopes both upper and lower... They are trying to figure out where the blood is coming from. I am in constant pain, kind of like spasms right where the surgery site would be (where my rectum used to be). I am going to see my surgeon on Dec 6th and have to decide if I want the ileostomy back. If I don't, I will always be on a painkiller of some sort, and my quality of life is just down the tubes. I'm 30, and I have 2 small boys that I can't keep up with. I lived with an ileostomy for a year before, and I had the best year that I'd had in a while! I just keep asking myself, did I do EVERYTHING I could with this J pouch? My surgeon keeps encouraging me to keep the J pouch too. He always tells me not to give up, that it will get better... but I don't look at it as giving up, I look at it as getting my life back! Thanks for posting your personal experiences. It helps to know I'm not the only one.

Wow, that was a lot of excellent advice on the reversal subject. I am having a meeting with my surgeon this week to ask questions. My G.I. specialist said it is a relatively standard operation and that I should do it. He said he would do it in a minute if he had a bag stuck to him. Ha ha, I looked him right in the eye and said, "But you don't, it's easy to say that and read about it, but you have no idea what it's like to go through it. The recovery time, the lost wages, I don't know how I'll pay for my mortgage if I have a problem and the recovery time goes longer." He said that I should get another opinion to make me feel better about my decision. There are so many factors that make the ultimate decision, and they're all different from one person to the next.
I have UC and got my ileo in July 2008 due to an emergency. I am leaning toward the reversal and hope that I can be one of those people like Larry with a happy comment about the J-pouch.

Dan

I don't know if I'm coming on too strong but I feel that I really need to put my words in. In July, 2010, I was in my own little world where everything seemed to be going good. Joe, my husband, was going to finally retire the end of October and we were going good, everything seemed to be great.

Then the 'shit' hit the fan on the 31st. I don't remember the ambulance driver...the EMTs or anything. I woke up...well not really there yet, but semi-awake and saw all kinds of bottles hanging from 2 posts on the sides of my bed. I looked around and had an idea where I was, but not knowing why.

When I was finally able to be aware of my problem that had been fixed which I had no idea I even had the problem to be fixed in the first place. Okay...so I'm rambling!! I guess I have that right too, don't I?

First off, I no longer see my doctor that did the colonoscopy and the ileostomy. This doctor is my gastro doctor and I really only see him once a year, at most. I've read the different replies regarding having a reversal...not having it...who should do it...who shouldn't do it.

I'm seeing a surgeon. This doc comes very highly recommended by my cardiologist and my regular physician. The surgeries he performs are all mainly reversals. He stated that he would not do a reversal if he thought it wouldn't be advantageous to the patient. Now, after having some testing done at the hospital, and getting an 'ok' from my cardiologist, this doctor really had good news for me and my husband. The doctor has me scheduled to have the reversal on April 7th. I'll be in the hospital for about a week or a week and a half. I've got my fingers crossed because I really want this to be the end of all of this and the problems I've been having.

Barbie

I reluctantly ended up with a colostomy (Hartman's pouch) 18 months ago.
The doctor claimed I had "pelvic outlet dysfunction/pelvic outlet obstruction."
Shortly afterward, I told her it was not working. My husband and I asked her if the ostomy could be reversed. At one visit, she said, "No. It may make you worse."
When I had a visiting nurse, she called and asked why the ostomy was done and if it could be reversed. The colorectal nurse told her, "Maybe, but we're waiting to see..."
Then last summer, my primary care physician called and asked her the same things, plus asked for her input on my care. Same answer. Then when my PCP again asked for help in my care...there was a click and then music. PCP called her right back and was told she was "at a meeting."
So I can no longer go back to that surgeon.
And I'm stuck with an ostomy that was not the solution.
Maybe reversal would have been an option, but we'll never know.
We live in the middle of nowhere, no car due to an accident. No big hospitals around here.

What has happened, did you get a reversal? All these posts just seem to end....

Beanie,

I had not read these forum posts before today - much goes back to Oct 2010. I am so glad you asked what happened. I would love to have updates for all of these people.

My emergency surgery was Aug 2010. No complications before or since. I decided almost immediately I would not seek a reversal. There are many reasons. My ostomy is just a non-issue in my life. Some other things are issues but have no options.

I see how troubled many people are with their ostomies and am interested in each of these people that have posted. I would love to hear how they are doing now and also would like to hear from others with similar issues.

Again, thanks for asking.

Carol

Would you like to talk in person if possible? I live in Dallas, TX.
****
Ask me anything.

Get an opinion from a major medical facility like the Mayo Clinic or similar high-profile facility. You can often make appointments online and you don't need referrals most of the time, only a copy of your medical records.

Had reversal. Didn't work. Complete obstruction of colon. Will have bag rest of life. Have no problem with that. Good luck. Most people have no problem with reversal.

So I was told the same thing and I feel every bit of what you're going through, betrayal.