Reversal Experience and Concerns with Ileostomy

Thinking about, and talking to the doctor about having a reversal done on my ileostomy in the next couple of months. I am, however, scared beyond belief to have this done. I was in the hospital for over a month, where I had two emergency surgeries and ended up with my ileostomy. I believe I have anxiety and almost PTSD from being in the hospital that long, so I do not want to go back and have heard several horror stories about people having reversals. If anyone who has actually had one or knows firsthand would like to share some knowledge or answer some questions, I would be grateful.

More details needed. Why did you get the ileostomy? Do you have Crohn's or UC? Do you still have your colon? Are you considering a J pouch?

This is a recent discussion from a lady who decided not to reverse. There are others from folks who had both successful and unsuccessful reversals.

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=35951

A key consideration is why you had the ostomy to start with. How much damage was done and therefore how many problems are expected from the reversal? In general, a traumatic injury that caused very little damage and healed well in an otherwise healthy and young person is probably a good bet. Very few people fall into that category. More damage, chronic colon illnesses like UC or Crohn's, cancer in the pelvis, especially if you had radiation, poor general health, getting older, etc., are all factors that reduce the success rate.

Have a frank conversation with your doctor about your risk factors and chances of success, then go get a second or even a third opinion. As bad as a second surgery to reverse might be, a failed reversal will result in a third. You want to have confidence that you are making the best choice for you.

I looked at your profile for more info. Why did you end up with an ileostomy, etc.? Without knowing, it's hard to answer. I know what you mean about the PTSD; emergency surgery is just that, and we have no time to mentally prepare. I woke up in ICU, and it was days before I realized what had happened. But I had my reversal just over 2 years ago, and all went well. Take care.

If you are handling your ileostomy okay, then consider keeping it. Better the devil you know.

Regards, IGGIE

How to Stay Hydrated with an Ostomy with Collin | Hollister

I had my reversal on 10/10/25. I am proud of my decision. I had the iliostomy for about 6-8 weeks. I know everyone keeps saying it depends on the reason you ended up with your iliostomy. That's info you may not want to share. I'm not going to share the details of all of mine as some is private. What I will share is there was an accident at my work that caused me to fall backwards in a seated position onto a metal rod. That metal rod impaled me not just in my colon, but the most detrimental Injuries were the through and through injuries to my colon. I ended up in emergency trauma surgery to save my life. I woke up with a temporary iliostomy. I had to have another surgery days later with the colon surgeon for him to do more repairs to the lacerations in my colon that the trauma surgeon couldn't do. I was in the hospital 7 days the first go. I did not do well with the iliostomy as I'm allergic to adhesives and it went badly the whole time. I counted the days until I was eligible for reversal. For me it was a no brainer of a decision. I already deal with having RA, POTS, and celiac disease.The iliostomy was just too much to me. For those that accept it well I applaud them so much. It is not easy to do mentally. Chronic illness is just s lot and I also understand for chrohns and UC it may be looked at as something that gave their life back. I've seen many stories on TikTok like that. For me personally I never got to that place mentally. That's my own mental struggle but dealing with RA and POTS is a lot already. I personally felt like I couldn't take anymore. I felt like that was the final straw I couldn't take anymore. I know this is long I just didn't want anyone to think I meant anything bad. Also everyone needs to understand their feelings are valid. There's a lot of feelings for sure. We have to support one another. As far as my reversal, it was done on a Friday morning and I went home the following Monday afternoon. They keep you until your can pass gas and have a bowel movement. Now I will tell you it is painful when your intestines "wake up" as they put it.  In my opinion it's worth it. Friday will be 3 weeks post-op. Recovery has its ups and downs with the gas pains and stuff , but it's nothing I can't handle. The main thing is to make sure you have a great colon and rectal surgeon to do it. It has made it smoother on me once they told me to use a stool softener and miralax daily. Just to make it easier on my colon while it heals. It seems from your story your about like me and haven't had your iliostomy a very long time so you should heal fine. They did a colonoscopy on me before the reversal to make sure all lacerations were completely healed. So depending on your reason for having the iliostomy you may want to push for having that done first. 

I hope this helps you some. Sorry for the long response. I'm happy to answer any other specific questions you may have.