Reversing Ileostomy: Personal Choice or Medical Necessity?

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susanmiller129

I recently had an ileostomy in February. Unfortunately, I had a doctor who completely misled myself and my mother into believing that I wouldn't need a bag and he could reconnect my colon. He completely betrayed my trust and needless to say, I won't be going back to him again. I've only recently decided to find a new gastroenterologist since I was so betrayed by my previous doctor. Anyways, I was wondering if anyone has had reversals simply because they wanted one. I know there are a lot of circumstances in which ileostomies are temporary, but I'd like to know if anyone has had one simply because they asked for one. My doctor did not remove my anus or rectum or whatever the proper term is, so I know that technically it's still possible to reverse my ileostomy, but I know there needs to be other conditions met before a doctor would consider reversing it. Any info or tips would be greatly appreciated!!!

Beans_Momma322

I'm sure that a surgeon would be willing to try a reversal, as long as it wouldn't be completely detrimental to your health to do so. However, after reading your other post, where I believe you said you were still losing weight, I don't think that you'd be able to have a reversal done at this point in time. If your situation is anything like mine, and it certainly sounds like it is, then your body is in no condition to be undergoing a major, unnecessary surgery.

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janice

Reversals aren't always successful. I had one in Sept '08. It was the most difficult surgery for me to recover from. I never did recover...was always on the toilet with diarrhea, pain, bloating, until May '09 when my bowels ruptured again. I will not try another reversal. I feel much better physically with my 2 ostomies.

WOUNDED DOE

Hi, I too had an unsuccessful reversal....I doubt I would ever try it again....I was misled as well....everyone's situation is different so I don't want to kill hope for anyone else....but in my case, I was pretty much used as a lab rat, or at least that is how I felt....long story but quite frankly, life is easier for certain with this ostomy :/



~Love from your Doe
bikerboy

I agree with Doe and Janice on this one. I've read dozens of stories of bad reversals. All my docs also say, "Sure, we can do it BUT????". It would be multiple surgeries and problems with leakage and infection. So why do it? I'm comfortable with the bag. I'm alive, I'm back to my old self, and in many ways better than before. I don't rely on being near a toilet all the time, which you would with a reversal. You would have to live your life wearing a depends and be on a loo all the time. Nope, your friends here are the best tellers of the way life is. We are not doctors, but we know what's right and what works for us. Docs like to sugar coat procedures.

Greg

 
Words of Encouragement from Ostomy Advocates I Hollister
mooza

Agree with all the posts. I had 4 reversals from Crohn's mate. Don't do it or at least weigh up the pros and cons. Haven't heard any or not many people saying life is better. Keep your chin up. Mooza.

beyondpar

Hi, I too had an unsuccessful reversal... And I agree with all the posts above. The only difference I might want to talk about is that you are a younger person than some of us who have had the reversal, and that might work in your favor for it having a better chance of working. But I and others on this site will, after unsuccessful attempts, tell you it basically doesn't work the way it is presented to us as patients. The doctor will tell you, "Yes, the reversal was a success," but you still might be going 8-10 times a day or your stool is thin and pasty (which isn't so wonderful) or you still have cramps when stool is entering the repaired area of the intestine or rectum or whatever. And after a number of years of continued suffering, you will end up as an ostomy again...

In my book, that is a good thing and I couldn't be any happier, but know that I held on to every word the doctors had told me and I listened with all the hope we all have as sufferers of a chronic illness. And today, my illness journey is over (took 24 years) and I love my ostomy and all the freedom it gives me. Never an issue, never a cramp, never a bad bowel movement, and no pills and no doctor visits... YAHOOOOOOOOOOOO...

Yes, I have a pouch and it doesn't get in the way of my life in any way. Did it take some time to adjust? Yes, but once there, nothing but freedom... You should know that I am an ex-UC sufferer, so the ileo was my salvation... LOL... In general, the reversals, they have proven to not work as well as presented...

Michael

three

I am so grateful to read everyone's comments on reversals. Since my ostomy surgery in 2008, my instincts have always been contrary to the urgings of my doctors who look at me with "digital question marks" in their eyes each time I try to explain why I am not considering a reversal at this point in time. Thanks again to all of you who take the time to share what you have experienced. Many of your words confirm what my instincts have been whispering!

Pinky

Hi Susan - you didn't say in your post if the surgeon had taken your entire colon out. If you still have your rectum/anal sphincter then you can try a J-pouch even with your colon completely gone. Or an internal continent reservoir. Of course these mean more surgery and side effects/complications of their own.

My surgeon was trying for a J-pouch for me, but due to massive adhesions from previous surgeries and chemotherapy, there was no room for a pouch, so he gave me a permanent colostomy. He had been my surgeon for many years at that point and had my full trust.

Make sure you see a colon and rectum surgeon for any future work you have done. Many general surgeons think they are up to handling this stuff and they are NOT!

My own temporary colostomy reversal back in 2004 did not work out well. I was always in pain, and ended up with a nearly ruptured colon. Yet I have known people who had J-pouches for 20+ years and liked them, and only when they got to be in their 50s did they go back to having a pouch.

The biggest lesson I have learned in life is "never say never". Good luck!

beyondpar

Pinky,

You say you have known people who have had J-Pouches for 20+ years and liked them. If you could share with me who they are so that we can document the journey of a J-poucher with all its side issues and complications, so those contemplating it are getting advice from those living with a J-Pouch.
The whole forum knows my take on J-Pouch and it's a life mission for me to find who these happy J-Pouch people are as I am 4 years into being an ostomate and an ex-J-Poucher and I still haven't found one.....Yes, I will say it again, I haven't found one........
I want to be proven wrong that they do exist but until I find at least one, I don't think they do.......It's like the Wizard of OZ-tomy and all the negative hype and hearsay about us as ostomates is completely false and only in the minds of those doctors and the establishment perpetuating a fear that doesn't exist, while the doctors are promoting the goodness of J-Pouch and reversals which I believe doesn't exist.

It's completely backwards in my opinion, and I will try to be as objective as possible when I do meet the happy J-poucher and get an interview with them so to speak, to hear it from the horse's mouth. But many of us on this site can speak as ex-J-pouchers because we were there, and we were unsuccessful in our journey to remain "normal" only to find and end up with the imperfection (which we all had feared) and wonderfulness of permanent ostomy.

Let's help those contemplating the reversal, but I do ask that we give them opinions and advice from both sides of the table....The ostomates are at the table, now let's get some happy J-pouchers to add to this conversation...I need your help to do that.

Michael

darwin_liong

Michael

What do you not feel tortured like pain and itching around the hole intestine?
Doctors say:
If I undergo surgery (become ostomate)
then I will be tormented for life.

lottagelady

Hi everyone!

It seems that my very recent surgery might well have been successful (probably a bit too soon to tell, but looking pretty promising so far!)

If this is the case, then I would probably be looking at a reversal of ileostomy .... In theory I do not have any bowel disease, but as I now have fibromyalgia, IBS is quite prevalent with this syndrome - I often feel nauseous etc but who knows whether or not that would be a problem as my ileostomy could well be masking any symptoms ..... Also my anus has been refashioned several times - not sure how well my pelvic floor and rectal muscles will hold up either?

I am no longer as healthy as I was when the stoma was formed; I now am diabetic as well as having the fibro, pernicious anemia, sleep apnea, osteoarthritis and spinal and mobility issues .....

The next lot of surgery will include a huge hernia repair also.

My quandary is - do I go ahead and risk a reversal with the possibility yet again of being fecally incontinent or having IBS, or do I have a relocation of permanent stoma with the prospect of starting over with a new stoma and a new hernia site? I suppose that with either surgery there is the risk of infection, adhesions .......

I know that it is my decision whatever but would welcome any thoughts or input of bits I may have missed out or not thought about ....

Thanks guys and gals
Rach xxx

beyondpar
Dear Darwin,

My heart aches for you and your journey. I do not know of your illness, but for a lot of us on this site, getting the ostomy was to relieve one of pain, or be set free from chronic illness or to save one's life from death.............PERIOD

For me and many others, it is a joy and life-giving and a wonderful alternative to the pain and misery we all have endured.........

There is one thing I will tell you for sure..........

DO NOT LET THE DOCTOR WHO SAYS YOUR LIFE WILL BE MISERABLE IF YOU GET AN OSTOMY, PERFORM YOUR SURGERY;.....PERIOD

You need to share more of your illness and journey and get an interpreter, so you don't continue to suffer with questions and answers you are looking for, but can't express your questions the way you would like or as quickly too.
Michael
junopete

Beyondpar,

In principle, I tend to agree with you.
However, I have had a J pouch going on 2 years.
So now you do know a person where it has worked.

I will say this also. I researched it to death. I came to the conclusion if the intestinal problem
and ostomy were due to any of the following, do not try the J pouch.
Crohn's
U/C
Cancer

Rick......

beyondpar

Juno,
I am not looking for a J-poucher where it works........The doctors will say it works as long as poop is exiting your bottom, regardless of how many BMS, and consistency and the pouchitis that comes with J-Pouch.

I am looking for a J-poucher who is thrilled and happy to have a J-pouch. Who has a decent BM and not too many. As you will find many happy ostomates who are now pain-free,

continue on with your sharing, Juno.

Bowel movements? How many? Consistency?

Toothpaste thin? Thick? Oatmeal consistency?

Any pains? Any pouchitis? And accidents?

Any urgency? Can you be stuck in traffic and not worry?

Doctor visits?

Any hospital visits as a result of pouchitis?

Any medicine to take to keep in check?

Share, Rick, if you don't mind?

Thanking you in advance

;Michael

aquarius29

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.

mooza

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

Faith4Today

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

bamatex
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
Pinky

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".

ELLENANNE1

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.

Faith4Today

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.

nodwell
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.
nodwell
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.
KennyT

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.

beyondpar

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

tyndi

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.

Lt. Dan

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

Mystified

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

mis010fit

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.

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