Should I have a ileostomy reversal?

[KatieDory]

Hello

I had an emergency ileostomy in June 2020 due to a perforation, they removed a small amount of small and large bowel around 15/20cm i think. I have been offered a reversal and initially I was certain I wanted it, but now after reading a few stories and my surgeon reading all the risks i.e incontinence I am worried about my decision.

Before my perforation I only suffered with pain and not diarrhoea, so I’m terrified i’ll lose my quality of life living on the toilet. I have adapted well to a stoma but I am 26 years old and the thought of living the rest of my life with a stoma is a bit sad.

With crohns i know it’s a fact i will get ill again. I feel like if I keep the stoma it’s sort of treatment for the future that i’m pre-emptively keeping in preparation for toilet troubles. But it might never happen! I might be able to control my bowels well and not have diarrhoea all the time. I just feel like it’s a risk.

I’m posting to see if anyone else has struggled with this decision and what you did? also how is life after your reversal? are you happy with your decision?

Thanks,
KatieDory

 

[Delta_hippo]

I had emergency resection and ileostomy in May 2017 and had the reversal in November 2017. Glad I had it reversed. The Crohn’s came back within a few months so have been on various drugs since then. I was 38 at the time.
For me the longer I can go without needing a stoma again the better, my skin hated the bag adhesive so I had problems there. Also the more intestines you have the better you can digest food and get the nutrients out (or so I understand).
No problems with diarrhoea or incontinence.
Good luck whatever you decide

 

[KatieDory]

I had emergency resection and ileostomy in May 2017 and had the reversal in November 2017. Glad I had it reversed. The Crohn’s came back within a few months so have been on various drugs since then. I was 38 at the time.
For me the longer I can go without needing a stoma again the better, my skin hated the bag adhesive so I had problems there. Also the more intestines you have the better you can digest food and get the nutrients out (or so I understand).
No problems with diarrhoea or incontinence.
Good luck whatever you decide

Thanks for replying
Can i just ask what part of the bowel you had removed? Ive been told that if you have a significant piece of large bowel removed your more likely to have diarrhoea as water is not absorbed.

 

[Delta_hippo]

Sorry for slow reply. My resection was small intestine, terminal ilieum I think?
I’m not sure how long the large intestine is, I gues the proportion you would have left might be relevant?

 

[Kannassee]

Everybody is different but overall I think that I am glad that I had the reversal.

In 2018 I had emergency surgery to remove my sigmoid colon and I got first a colostomy. 3 months later they reconnected the 2 pieces that were left but then they did an ileostomy to let the reconnected colon "rest". The ileostomy was the worst of the two big time. It was very difficult with the adhesives and the bag and my skin was burnt all the time around the stoma. They were able to reverse the ileostomy 5 months later. It took a little to adjust but it was not that bad. A little of diarrea at the beginning but I have now almost normal bowel movements again.

The bad part is that I began to develop bowel obstructions in my small bowel. I did not know it at the time but I had a stricture in my terminal ileum that was causing the obstructions and I was diagnosed with Crohns 3 months ago. So probably it was Crohns that caused the stricture during all these years that I went undiagnosed but there is also a probability that it developed in the location where they did the anastomosis. They are going to try to dilate it with a balloon when they get Crohns under control with Remicade.

But I do not miss that ileostomy bag at all.