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Reasons for reversal

Posted by susanmiller129, on Tue Sep 28, 2010 8:11 pm
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!!!
Reply by Beans_Momma322, on Tue Sep 28, 2010 9:06 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.

Reply by janice, on Wed Sep 29, 2010 2:29 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.
Reply by WOUNDED DOE, on Wed Sep 29, 2010 5:11 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
Reply by bikerboy, on Wed Sep 29, 2010 6:25 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 like to sugar coat procedures.
Reply by mooza, on Wed Sep 29, 2010 7:47 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
Reply by beyondpar, on Wed Sep 29, 2010 10:31 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 ...

Reply by three, on Wed Sep 29, 2010 2:02 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!
Reply by Pinky, on Wed Sep 29, 2010 7:07 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!
Reply by beyondpar, on Thu Sep 30, 2010 8:36 am

           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.

Reply by darwin_liong, on Thu Sep 30, 2010 2:51 pm

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
Reply by lottagelady, on Thu Sep 30, 2010 2:55 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
Reply by beyondpar, on Thu Sep 30, 2010 3:01 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..........


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.
Reply by junopete, on Thu Sep 30, 2010 6:25 pm

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.

Reply by beyondpar, on Thu Sep 30, 2010 7:06 pm
             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


Last edited by beyondpar on Fri Oct 01, 2010 9:47 am; edited 3 times in total
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