Reversal or Stump Removal - Seeking Opinions

Hi. I'm new to this site... I'm Wendy. I had my colostomy in June of 2016, due to Crohn's disease and several other issues. I wanted to see what some of you think who either had the reversal done or the stump removal, and whether you're happy with your decision. It's coming up on a year for me, and if I find out I am eligible to have it reversed I'm not sure if I want to. It's kind of nice not running to the bathroom 30-40 times a day... lol. So what are your opinions? Thanks, Wendy

Hello Crystalheart75.

Welcome to the site and I hope you have many productive hours communicating with your fellow ostmates.  

My opinion was/is the same as yours " Its kind of nice not running to the bathroom 30-40 times a day" In  case it was a matter of being fecally incontinent so I had almost no chance of controlling it like I do now. I could not see the point of a reversal becasue it would not have resolved the problem I had which needed the stoma in the first place.

Best wishes

Bill

Hi Wendy,

I just wanted to say welcome to MAO. Hope you stay and visit with us for awhile .

Wendy,

Hi and welcome to the site. I concur with Bill. Even if I were a candidate for a reversal, I'd probably stick with my ileostomy. I don't miss the urgency to find a bathroom at all and it would probably be worse for me as I don't have a large intestine anymore. I was warned about how acidic my output is now and it would probably be havoc on my rectum.

I'm very happy with my decision to have an ostomy and wouldn't change it for anything. Hope this helps.

Bain

I'm really thinking after a lot of thought I'm not going to reverse. I have to ask him though how long I can wait to have the rectal stump removed, just was in the hospital with a hemoglobin of 5 and need time for my body to heal and get my counts back up. If I can wait at least till the end of the year that's great. I see a lot of people don't even do it at all or it's years before they do. It's nice to be able to research things on the internet but then again sometimes you read too much lol.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Wendy,

Welcome to this site. You came to the right place to ask questions. Many ostomates had their surgery due to Crohn's, UC, or cancer... Whether or not to reverse has more to do with the presence or the possibility of disease returning. Many people with cancer just have a temporary colostomy, and if there's no disease or damage to the rectum, can, in time, have a successful reversal. That's not necessarily true of people with UC or Crohn's.

I had Ulcerative Colitis for nearly 4 years (50 years ago) and they did not remove the rectal stump/sigmoid colon along with the large intestine. I was only 15 back then, and my doctors thought that "someday" there would be a cure. But after 4 years of trying to treat the rectum... it never really healed. I was 19, was going to college, was planning on getting married, and was quite happy with living with my ileostomy. But I had to argue with my parents and doctors to take out the diseased rectum. I never regretted the choice.

Crohn's is different. UC does not travel to the small intestine or stomach, but "Crohn's can jump from place to place, and occurs from the gullet to the anus. So even if you're symptom-free one year, it doesn't mean that the disease is gone. It's an autoimmune condition (as is UC) and can go into remission and then recur. My ex-husband had Crohn's, and although he never had the rectum removed, it was often diseased. We have two grown sons, and both have IBD. One with Crohn's and the other with Ulcerative Colitis. My younger son (UC) manages his disease with diet (vegan) and is now off medication after 20+ years. My older son has Crohn's and manages his condition with immunosuppressants. He has periods of remission and occasional flare-ups.

It's a big decision for you to make, but there's really no rush. I waited 4 years before having the final surgery. Please write if you'd like any more information.

Marsha,

My daughter-in-law developed MS, and while she was in recovery, she researched (she's a psychologist PhD) autoimmune conditions and decided that she and her husband (my son) and their two little boys... were going to become vegans. Her research found that many autoimmune conditions are triggered by foods unique to the individual and to the disease itself. For IBD, it's dairy products... so no milk/dairy in their house. She takes it very seriously. Just to let you know... in 4 years of diet and no medications, she "healed" the two brain lesions she had, and Jay's Crohn's went into remission. They're committed to the changes for themselves and for their two little boys, who inherited some awful genes! So far... they're healthy.

Welcome... Ok, I am only 5 months post-op colostomy and what and why get your rectal stump removed? I am looking at going in to get a botched job fixed and possibly a reversal. But I don't want a reversal if there is any chance I would have to go back in for another stoma. Now I am really stumped...pun intended... Linda