Help! The big debate: to reverse or not to reverse my end ileostomy? It's been about 14 months since my emergency operation due to Crohn's. Do I have to get a reversal? Can I stay as I am? I don't know 🤷🏻♀️
Big spaghetti
Jan 30, 2023 8:43 pm
CrappyColon
Jan 30, 2023 9:03 pm
Sounds like it's up to you. I had a reversal in November, but I don't have Crohn's. Unsure of your age, at my age I at least wanted to try. My husband actually wanted me to keep my ileostomy; he thought it would be easier for me because I crave an independent lifestyle. With the GI issues I'm having and just how many complications I had after surgery, I'd say ask me in 6 months to a year if I like the reversal. But I don't regret trying.
Feel free to ask me any questions.
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Posted by: ejbetty
Geekyjen,
Thanks for the reply. I will be seeing my doctor on Friday and mention Entyvio. I did not remain paralyzed for more than 2 days, but it was terrible and I was so scared. The doctors just used alot of xanax and other drugs like that to UN paralyze my joints that were being attacked by the remicade. Turns out I have been diagnosed with LUPUS. It is attacking my nervous system. I had ulcerative colitis in 1996 and they had to remove my colon. Had a J pouch for 10 years, until it started failing. I then got a permanent iliosomy, and I suffer from severe chronic diareha, and I dehydrate frequently. I recently had a proctectomy, and that is when the new autoimmune disorder, Lupus, appeared. I have had two hospital stays now because of the blisters and the paralyzing incident. I will be dealing with this forever now. I have just been working on acceptance.
I love this website because of wonderful people like you!
Betty
w30bob
Jan 31, 2023 7:21 am
Depends on what you mean by 'end ileostomy'. Will they reconnect your colon, or was that removed? Is your terminal ileum intact? What kind of lifestyle are you looking for? There's a lot to consider... but there's no rush... is there?
:O)
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Ben38
Jan 31, 2023 3:35 pm
No, no one can force you to have any surgery or a reversal if you don't want it. If you don't have a reversal, it's possible that sometime in the future a doctor might think it's best to remove your colon, rectum, and anus (just presuming you still have your colon), but only a doctor can advise on that.
As you're in the UK, I would suggest you speak to your stoma nurse and consultant. Tell them how you're feeling about going through with a reversal, and there's no rush to make a decision. Take as much time as you need and see and speak to them as many times as you need to.
If you haven't done so already, it might be helpful to speak to someone from the UK Ileostomy & Internal Pouch Association so you could speak to someone who has had a reversal. It might help with making your final decision.