Reversal or Retain: Seeking Advice on Ileostomy Decision

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Past Member

What I am looking for is someone who either had an Ileostomy and had it reversed, or someone who had a reversal, but went back to a stoma. I'm due to make a decision very soon, after waiting for over 5 years, as to whether I keep my stoma or have it reversed, but can't find anyone who has any experience of this situation. Desperate to talk to anyone who is prepared to chat about their experiences. I can travel anywhere in the UK.

eefyjig

Hi Daffyduck. I was diagnosed with ulcerative colitis in 2008, had my entire colon removed minus a "rectal stump" for J-pouch attachment and had a temporary stoma in 2010 (two, actually - an end with surgery #1 and then a loop with surgery #2.) Had my reversal with surgery #3 of that same year. Lived five uncertain, stressful years with my J-pouch and opted for a permanent end stoma and Barbie butt with surgery #4 in 2015. Because of my UC, I had issues after reversal as the disease continued to affect what colon I had left, which was that little stump. I also had pouchitis, an inflammation of the J-pouch. So I think it depends on why you're getting reversed, what your diagnosis was, how much colon you have left, etc. Can your surgeon put you in touch with a former patient who can share their experience with you? I'm sure you'll get helpful feedback on here, too. It's a tough decision!

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pkm

I had my colectomy with a J-pouch in 2005. I hated it - felt like I still had UC but without the pain. Still had to be close to a bathroom at all times. After 8 years, I finally got my ileostomy and I haven't regretted it for one minute.

crappycolondiaries

This is a personal opinion, but it made the decision easy for me... I asked myself why not try it? I know my age may be a factor as in my recovery should be better, but it wasn't. I developed an ileus. I didn't see what your reason for having an ileostomy in the first place is but that also plays a factor. I don't fall under the typical colon disease umbrellas at the moment (hopefully research will give it a name still). I had started getting sick in my early 20s, was really sick when my kids were babies. In the early years it looked like colitis in a lot of ways. Long story short, I finally ended up with the right Dr, a motility specialist at Cleveland Clinic. Something autoimmune triggered a response in my body that killed the nerves in my colon and so it no longer moved. Hence me getting sick every time I ate. I just had the reversal in November and with the complications and not feeling great (they're assuming a GI virus at this point) I don't feel like I can say this was definitely worth it for me or not, give me another 6 months. But I do not regret trying. I can always go back to an ileostomy.
I do not have a j-pouch, I have an ileorectalanastomosis (don't ask how many times I had to practice spelling that before I could do it from memory ha) but I'm assuming since it's an entirely different structural entity that the risks/complications for each would be different.

TerryLT

You need to be aware that the chances of a good outcome are greatly reduced with an ileostomy, versus a colostomy. I was given the option of a reversal, but after doing my research, decided against it. Have you discussed the possible outcomes with your surgeon? You need to ask yourself if you are happy with your current quality of life and the prospect of spending the rest of it with an ileostomy, versus the risks of surgery, and the likelihood of a reversal being successful in improving your quality of life. This topic has been discussed at length on this site in recent days and weeks. If you scroll back, or look under 'Premium Content', you may find some of the posts. Good luck with your decision.

Terry

 
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IGGIE

I had my colon removed in 2004 and had a J-Pouch, but I had 18 years of problems. My surgeon kept talking me out of it, but in August 2021, I had a full ileostomy and a Kock pouch. I wasted 18 years, and now I am so happy with my stoma. Have it done. Regards, IGGIE

gentlejohn

What you do depends on why you had the ileostomy. Ulcerative colitis? Crohn's? Ischemic colitis? How functional is your rectum? Is your rectum inflamed?

People with ileorectal anastomosis usually do well with increased stool frequency assuming the rectum is healthy. These are discussions for you and your surgeon.

cee

I had rectal cancer and was told there was enough colon to never need an ostomy. Nine years of suffering from radiation was a different story. I had a temporary ileostomy for three months at one point to heal the colon. It was reversed and the same problems resumed. I saw a surgeon who wanted to remove the colon and give me the J Pouch. I saw my main surgeon who told me a J Pouch is asking the body to do something unnatural and many, many people had problems. I elected a permanent colostomy and it changed my life completely for the better. I regret the years I spent suffering so. Good luck with your decision.

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