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Reasons for reversal

Tue Sep 28, 2010 7:11 pm
This is a great community. Consider joining.
I recently had an ileostomy in February. Unfortunately, I had a doctor who completely mislead 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!!!
These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Tue Sep 28, 2010 8:06 pm
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 loosing 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, than your body is in no condition to be undergoing a major, unnecessary surgery.

Wed Sep 29, 2010 1:29 am
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 direah, 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.
Wed Sep 29, 2010 4:11 am
Hi Smile   I, too, had an unsuccessful reversal....I doubt I would ever try it again....I was mislead 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 :/  Smile Smile

~Love from your Doe
Wed Sep 29, 2010 5:25 am
I agree with doe and janice on this one.Ive read dozens of stories of bad reversals.All my docs also say sure we can do it BUT???? it would be multiple surgerys and probs with leakage and infection.So why do it Im comfortable with the bag.Im alive Im back to my old self and in many ways better than before.I dont 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 whats right and what works for us.docs like to sugar coat procedures.
greg
Wed Sep 29, 2010 6:47 am
agree with all the posts   i had 4 reversals fron crohn's maate dont do it or at least way up the pro'a and cons  havnt heard any or not many peeps sayin life  is better,m,                                                                  keep your chin up .mooza
Wed Sep 29, 2010 9:31 am
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 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 unsuccesful attempts,  will tell you it basically doesnt 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 /day or your stool is thin and pasty( which isnt so wonderful) or you still have cramps when stool is entering the repaired area of intestine or rectum or whatever..and after a number of years of continued suffering  you will end up as an Osto again......

                    In my book that is a good thing and I couldnt 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 and never an issue, and never a cramp and never a bad bowel movement , and no pills and no doctor visits..YAHOOOOOOOOOOOO...



Yes I have a pouch and it doesnt get in the way of my life in anyway...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
Wed Sep 29, 2010 1:02 pm
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!
Wed Sep 29, 2010 6:07 pm
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 spinchter 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".     Smile        Good luck!
Thu Sep 30, 2010 7:36 am
Pinky,

           You say you have know 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 Its a life mission for me to find who these happy J-Pouch people are as I am 4 years into being and Ostomate and EX - J-Poucher and I still havent found ONE.....Yes I will say it again I havent found ONE........
I want to be proven wrong that they do exist but until I find at least one,  I dont think they do.......Its like the Wizard of OZ-tomy and all the negative hype and hearsay about Us as Osotmates is completely false and only in the minds of those doctors and the establishment perpetuating a fear that doesnt exist,  while the doctors are  promoting a goodness of J-Pouch and reversals which I believe doesnt exist.

ITs completely backwards in my opinion,  and I will try and 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 horses mouth.  But many of us on this site can speak as EX J-poucher s because we were there, and we were unsuccessful in our juorney to remain "normal"  only to find and end up with the imperfection ( which we all had feared) and wonderfulness Of Permanent Ostomy.

Lets 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 lets get some happy J-pouchers to add to this conversation...I need your help to do that.

Michael
Thu Sep 30, 2010 1:51 pm
Michael

what you do 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
Thu Sep 30, 2010 1:55 pm
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 anaemia, sleep apnoea, 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 faecally 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
Thu Sep 30, 2010 2:01 pm
Dear Darwin,

My heart aches for you and your journey.  I do not know of your illness,  but for alot  of us on this site,  getting the  ostomy was to releive one of pain, or be set free from chronic illness or to save ones 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 OSTOMY,  PERFORM YOUR SURGERY;.....PERIOD


You need to share more of your illness and journey and get an interpreter, so you dont conitnue to suffer with questions and answers you are looking for , but cant express your questions the way you would like or as quickly too.
                                                                                                Michael
Thu Sep 30, 2010 5:25 pm
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 any of the following do not try the J pouch.
Crohns
U/C
Cancer

Rick......
Thu Sep 30, 2010 6:06 pm
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 consitency and the pouchitis that comes with J-Pouch.

I am looking for a j-poucher who is thrilled and happy to have 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 dont mind?

Thanking you in advance

       Michael


Last edited by beyondpar on Fri Oct 01, 2010 8:47 am; edited 3 times in total
Fri Oct 01, 2010 12:17 am
My Dr. told me that if he reversed mine I would have diarreha 24/7. They had goofed and cut my sphincter to short but of course never told that to myself or family
Fri Oct 01, 2010 4:33 am
welcome to the club..I have had 3 ops. Reversals and he would be right i have had crohns disease for 20 years well i thought great i lasted 2 years then i looked like a skeleton it ws soo bad...( @ least i tried ) but darlin you will be better wth what you got i have has 8 ops now something has happened to my back i still am in agony since 2008 so i wished i could go back reffered pain crohn/s athritis how the would i know enough DONT DO IT PLS..... GOOD LUCK THOUGH CHEERS FROM AUSTRALIA X
Sat Oct 02, 2010 6:32 am
While looking up several sites on ostomies. I found UOAA.  On their discussion board they have 100's of successful reversal stories, and one with a link to Dr Anderson bowel solution,  this has complete perscription and diet diet advice for both loose and hard stools post-op and advice on bowel training and irrigating after reversal.

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

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

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

Keeping ya'll in prayer, Faith
Sun Oct 03, 2010 12:56 pm
In response to all the negative comments about J Pouches I can only offer my own personal experience. I suffered w/ UC for 3 1/2 yrs before having a complete colectomy about 4 yrs ago. After a lot of experimenting w/ various appliance brands & 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 w/ 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, & extra weight it would be problematical. Then last yr I developed a peristomal hernia that required a surgical repair. A couple of weeks before the surgery my surgeon asked my 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 w/ my "system". After a lot of thought, prayer & a talk with a friend who's had a reversal I decided to have it done. I had the J pouch reversal surgery last Sept. & the "take down" reconnection surgery last Jan. After what I was told was a fairly typical recovery period which was at times painful & sometimes w/ out of control bowel movements (20+/day) I have settled into a fairly predictable & manageable routine. I no longer suffer any pain, I normally have 6-8 BM's/day & 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 & 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" w/ my surgeon he explained that it's mostly swallowed air.

I should also mention that I turned 65 yrs old last April, so you don't necessarily have to be young to have successful J Pouch surgery. I am convinced & feel strongly that the success of the surgery is directly proportional to the skill & quality of the surgical team doing the work. Also a high quality hospital minimizes your chance of complications & infection. My advice to anyone thinking of a reversal is the following: Seek out a high quality surgeon who specializes in colon & 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 w/ your other physicians whose judgement you trust, don't just ask your gastroenterologist. Talk w/ your ostomy nurse & 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 whose the most friendly or funniest, this has nothing to do w/ their skill level. Ask how many of these surgeries they've done & 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 & make the right decision. But also be mindful that every patient & every situation is unique, don't expect a miracle. Ask your surgeon to be honest w/ you about your odds for a successful outcome. Discuss it thoroughly w/ your surgeon & don't be afraid to ask questions. Pray about it & I wish you well.
Larry Wiggin
Sun Oct 03, 2010 8:04 pm
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".    Smile
Sun Oct 03, 2010 8:25 pm
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 by 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.
Sun Oct 03, 2010 11:50 pm
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 who ever 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 Drs within their medical group. Once you find a large hospital with several specialists, is there a web site 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 and south Texas is God's country a great place to live.
Sun Oct 17, 2010 8:16 am
Hello Susan,
In july 2009 I became unwell, ended up in hospital and after 3 days of tests and a C.T. scan I had a colostomy (hartmanns) which i didn't know about until I woke up in the high dependancy unit. I'd never heard of the word 'stoma' so i'd to be educated about it all. It wasn't easy to take it all in. I'd 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, this time it worked and i'm now 'bagfree'. 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.


Last edited by nodwell on Sun Oct 17, 2010 8:24 am; edited 1 time in total
Sun Oct 17, 2010 8:22 am
Hello Susan,
In july 2009 I became unwell, ended up in hospital and after 3 days of tests and a C.T. scan I had a colostomy (hartmanns) which i didn't know about until I woke up in the high dependancy unit. I'd never heard of the word 'stoma' so i'd to be educated about it all. It wasn't easy to take it all in. I'd 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, this time it worked and i'm now 'bagfree'. 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.
Mon Oct 18, 2010 6:14 am
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 diverticulitus 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 peiod until the colon heals satisfactorily well enough to be used again. The major difference between you and I 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.
Mon Oct 18, 2010 11:05 am
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
Wed Dec 01, 2010 11:54 am
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. Ive 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 cant 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'tlook 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.
Mon Jan 17, 2011 8:37 pm
Wow, that was alot 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 on my decision. There are so many factors that make the ultimate decision and there 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
Thu Jan 27, 2011 3:10 pm
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 grrr reat.  

Then the 'shit' hit the fan on the 31st.  I don't remember the ambulance driver...the emt's 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 colonostomy 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 advantages 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
Wed Jul 27, 2011 5:37 pm
I reluctantly ended up with a colostomy ( Hartman's pouch) 18 months ago.
The Dr. 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 were 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 accident. No big hospitals around here.
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