Ileostomy Reversal Anxiety - Seeking Positive Experiences

Hello, my name is Daniel and I had an emergency ileostomy on September 26, 2023, because of a perforated bowel from diverticulitis.

I am waiting for a call from the booking department for my reversal date and am extremely anxious. It has been a very long and hard road to get to where I am right now physically and mentally, but I feel a lot better now and am getting along pretty well for the most part with my stoma.

I'm nervous to have the reversal because of the horror stories I've read online, and the fact that I went through hell after the first surgery and spent 6 weeks in the hospital with blockage after blockage. I had to dilate my stoma every day with an 8-inch rod from a D&C kit my surgeon gave me just so waste would come out or my abdomen swelled up like a beach ball and I would have to get an NG tube over and over again. It was miserable. I just want to know that some part of this process isn't going to be a complete battle.

Can anyone share with me their experience? Regret the reversal or was it a positive experience.

Thanks

Hey Daniel, do you have any of your colon left? An ileostomy reversal is super different than a colostomy reversal, especially if there is no colon left. My abdominal colon is gone. I had an ileostomy reversal to an ileorectal anastomosis. It's different than a J-pouch, which seems to be the more common one, or maybe people just don't like saying ileorectal anastomosis out loud? It doesn't phase me, but everyone is different about stuff.

They removed 2 feet of colon, so I have 3 or so feet left.

Hi, Daniel. Great name, by the way! :-)

It would help to know if you still have your colon and how much of it is intact. That makes a big difference. Also, are you past the blockage issues?

I have an ileostomy, but I do not have any colon. I do have a mostly intact rectum. Personally, I decided against a reversal. Without a colon, the rectum becomes the only storage place and things come fast and furious. Although, things can be slowed by diet and things like loperamide. However, I would still be looking at always having to know where to find a toilet and the danger of nighttime incontinence. Plus, I am almost 76 years old, whereas you are 39. I probably would have opted differently had I been your age.

In looking at others' stories, you should keep in mind that everyone is different. Never is that more true than when you have an ostomy. One person's horror story may have no relevance to you. It all depends on how much stuff you have left and about a jillion other things wrapped up in being a living, breathing creature. I made my decision largely because of my age and the fact I have adapted well to my ostomy.

Daniel (as I said, great name! :-)

Hey there, it is a pretty great name, eh. I had 2 feet of my colon removed, so I still have 3 feet or so.

I am past all the blockage issues. It has been working great since Nov 3 of 2023. I have learned to live with it, and my wife has been amazing through all of this, but I have been going back and forth about this decision. There is nothing easy about living with a stoma, as you know, but I also don't miss the bowel problems I had before the life-saving surgery, which I don't have now. They removed all the diverticulitis.

But I always come back to the fact that I want to be put back together as soon as I can, but the thought of accidents at night, the constant need for a toilet, the urgency makes me second guess myself.

I haven't gone back to work yet because I run heavy equipment in a mine and don't have access to a bathroom, just a Porta Potty. It would be very inconvenient for me to have a bag at work and the worries and difficulty that come with it, so I have been waiting on the reversal, but I don't know at this point.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister