Considering Ileostomy Reversal at 21 – Thoughts?

Hi, I would like some advice from people who have had a reversal. Whilst I am adjusting to life quite well with my ileostomy, which I have had for three months now, I'm not sure that I want to keep it for the rest of my life as I'm only 21. But from reading other people's blogs and speaking to doctors, I know that a reversal is not going to necessarily be easy, and I could potentially be back to where I was before my surgery. Which is something I definitely don't want. Feeling well is amazing; people definitely take it for granted! Ha ha. So my question is, should I stick with the ileostomy or have the reversal? Any ideas? x

Hi, I'm 45 and have a Hartmann's sigmoidostomy, I believe. Mine's temporary. I've had it for 3 months and have one more to go. I think mine may be less tedious than an iliostomy from what I've read and heard, yet it's still scary hearing about the possible unsuccessfulness of a reversal, but I gotta do it. Just my situation, and blessings to you. Joe

Well, Sophie, I am 1 week post-op from my reversal, and so far the plumbing is working well! The pain from surgery and your guts waking up is excruciating, but with everything, it takes time and lots of patience. Mine was a little more intense as I had 3 hernias that they repaired along with a liver check, so my incision is just as long as the first. In my opinion, it is worth it, and you are so young and strong.

I'm in the same boat. I am up for reversal one day. I have had an ileostomy 5 weeks ago. Will it work? What happens if it does not? I have been diagnosed with Crohn's. I'm guessing there are no black and white answers to any questions relating to recovery likelihood of success. As I have been given no real answers to any questions I have asked the doctors and surgeons. I have had a terrible recovery from surgery. Forgive my naivety; I'm very new to all this, still very confused.

Hi, you're still young, and that is the problem I faced. I was 30 when I decided to have 'j pouch' surgery. I did not want a stoma at any cost. But by 36, I was no further forward, so I had it removed. I have an ileostomy now, and although not 100% happy with it, I'm alive and very well. I guess you have to be ill enough, long enough if you are not happy with yourself, like me. But in the end, it's when you feel you are ready. Hope this helps.

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Thanks for all the comments, guys. Lostrealist, I feel exactly the same. The doctors can't seem to give me any definite answers. At the moment, I'm still waiting for yet another operation to sort out a kidney problem, so a reversal isn't anywhere in the near future, but maybe a year or two down the line. But I'm not sure if it's worth it. I was so ill before my ops, and I don't want to risk going back to that if the Crohn's flares up again, which I was told it probably would if I had the reversal and would end up on tablets for the rest of my life. And don't worry, I'm new to all this too! lol Shep, I agree with you, I'm not overly happy with having an ileostomy, but as you say, we are alive and well, and that's what I'm enjoying at the moment! I've been coping well with it, so I'm in no rush, but at the same time, I don't really want to have it for the rest of my life!

I'm very lucky I only had problems after my appendix was removed. When I was 25, before then, I never had a single problem, but since then, I had a stricture in the terminal ileum and, other than pain, I don't suffer from any other Crohn's type symptoms. The pain was always in the same place, underneath my scar. My operation revealed an abscess on the wall of my abdomen, but the histology still said Crohn's, but I'm still not convinced it's Crohn's. I feel very selfish coming on here and moaning about having a bag, when I have read what other people have been/are going through. I feel terrible. I'm very lucky and never saw the world from this side before, being a fit, healthy young man at 27, now to being back to a one-year-old. My bags don't stick to my skin at the moment due to the scar being so close to the stoma, so every time I move, it leaks, and I constantly change and clean myself and my bed. It's like having mud in one hand and soap in the other.

I know how you feel, I see things differently now too. My stoma bag overlaps my wound dressing, which is taking ages to heal thanks to the multiple surgeries! You should look into using supports around the side like Hydroplast. It's just a semicircle that you can stick around the edge to help the edge parts stick... if that makes any sense, lol.

Yeah, I have some support loads of sample stuff, but there is one inch of skin between the stoma and the open scar; there's no room to stick anything to, unfortunately. And I have to cut the edge off the bag so it doesn't stick over the raw skin.

Go for it! Just wait until you are absolutely ready... No regrets here! The surgery was hard, the recovery is hard, but I am glad I garnered the strength to do it. I am almost two months out now. Melissa

Does anyone have any suggestions on extreme rectal pain? I am 2wks post-op of my reversal and hurting so bad from all of the bowel movements:(

I have not yet had my reversal. Is it soreness due to rawness? If so, I'd suggest Tucks, or simple witch hazel. Tucks already has it on them. Otherwise, I know nothing. Maybe something I have to look forward to. (Yippie, not)

Ha my nurse said it is normal as the anal nerves are waking up and healing. It will get better just takes time, plus the bowel movements have slowed way down yay!

Your butt is raw; use diaper rash ointment! I did and was thankful for the suggestion. This lasts two to three weeks.
Melissa