I had ileostomy for 1 1/2 years -Ileostomy is a stoma constructed by bringing the end or loop of small intestine out onto the surface. My rectum fistula was infected and drain setons and antibiotics no longer worked. At the same time I started Stelara injections and take 100 mg Imuran. All my problems in the rectum went away and fistula healed. I had a reversal Feb 20 of this year. The surgery was 90 min and I was in a hospital for 5 days. Stoma nurse showed me the basics of changing the bag in the hospital, then a home visiting nurse worked with me for about one week at home. It takes a while to find what type of bag and all the parts that go with it to find out what worked for me. There is soo many types of bags and styles.My problem was the heat ( I live in Fl)- tape would not stick and I had few issues with my skin until i found what worked. For some people having stoma saved their life's, it is certainly helped me to heal. Please let me know if you have any specific questions.

Hello. I wonder what assured you that the stoma would be temporary? Weren't you afraid that they would suddenly tell you that it had to be permanent?

That is great!

Thanks for sharing your story ❤

Wierd, but one day I watched a "stoma video" on YouTube and I dont have a stoma. It was educational. A young woman showed how she removes her stoma bag and puts on a new one. The only thing that surprised me was when they showed her intestine sticking out of her abdomen, I did not know about that.
Take Care. 🌻

I was not sure that I could have a reversal - just that Ileostomy has a better chance for reversal. also, I did not have any sections of GI track removed, just colon bypass to heal rectal area.

Hi exit4, did you experience any mucus drainage? I might need a colostomy and I keep reading some points about mucus drainage, and am worried it would keep re-infecting my fistula, or it would build up and become uncomfortable.

Next, do you know how often laparoscopic surgery for this is offered? I see it mentioned online but I often see videos of people who have a large scar down the middle, obviously they weren't able to have it done laparoscopically. Is it purely based on surgeon skill?

Also, I was wondering what made you decide on an ileostomy over a colostomy? I was thinking of doing the later since the rest of my colon is fine, I mainly just deal with recurring fissures/fistulas in the peri-anal area. I've heard that stool is more formed and since I have a very specific schedule (I go within 30min of waking up in the morning) that I might be able to wear a smaller appliance for later in the day.

Finally, did you read anything about the mortality rates for the surgery? I found one scary article on ncbi.nlm.gov that showed a mortality rate of ~10.7%, which seems crazy high. Maybe they were also counting people who eventually died of cancer or whatever they had?

Thanks so much for any answers!

Garf - I have a temp ileo and have had it for a little over two years. I had it placed prior to a surgery to repair a fistula (which worked) but I since developed another I am trying to heal before I have a reversal.

My surgery was intended to be laparascopic but they had to convert to an open procedure since my anatomy and scar tissue from a previous laparoscopic surgery made it difficult. I wasn't happy to wake up to find that and it did take a little longer to heal but the scar has faded with time.

With an ileo, it takes time to adjust -- to the stoma, to your diet, etc. You learn how your body processes certain foods and that a latte will mean multiple trips to the bathroom in short term, etc. The mucus varies individually but I think it is the one thing I wasn't adequately prepared for...but you learn how to best manage.

I still hope to be reversed and my current CRS is optimistic (others I consulted were pushing for making it permanent)...best of luck to you!

Thanks DCCrohns for all the info!

I am sorry to hear they had a change of plan while you were under and you weren't able to have it done laparoscopically, that must have been a shock -- but glad to hear the scar tissue has faded some. Also glad to hear you found a good CRS that's listening to you about having it reversed!

I think blockages are the next thing I'm most scared of as I've always had an issue with not chewing my food enough. However, for now I've decided to not get the ostomy surgery just yet since my surgeon has convinced me I may get my setons out in just 5 weeks from now. So I'll just have to push myself through the pain like I've done before (and I'm sure everyone here has done the same for one reason or another!).

Thanks again!