I think generally people close up the back because if you leave it
open, you will be passing stuff on a daily basis. If I had the perm ileo, I wouldn't want to worry about
pushing anything out the back. Just seems like an unnecessary hassle, but I don't know. I guess it is easier to leave it intact, I've heard the closure is difficult, but I've heard some people get through it pretty easily. Actually if you were 100% sure you wanted a perm ileo, you could do it in one surgery and be done. There are some benefits to the ileo. No chance of pouchitis or cuffitis, no problems with pouch issues, no need to worry about
incontinence or leaking, you retain the most of your intestines, causing slower transit and allowing for absorption of maximum fluids. It's actually sort of the no-nonsense solution. On the other hand, you need supplies for the rest of your life, and that comes with it's own challenges. The ostomy isn't hard to care for on the other hand, it's pretty easy and quick. I had some sexy ostomy wraps that I got from my supplier, free through my insurance, and I felt pretty confident, even while naked wearing those. Ultimately I didn't want to worry about
supplies and I moved forward with the surgeries. I had 3 steps and after the first, things were pretty great for me. I learned to master my pouch quickly. I tried tons of products, i felt like I was part of a secret society. I was having fun with it as much as I could. It didn't really impact my life majorly, but it's perspective. You can be happy and accept yourself, get past it, or you can focus on it all the time, feel bad about
yourself and blame it for all your problems. It sounds like you're pretty comfortable in your own skin and you will be okay whatever you decide. You can't really leave things the way they are after step 1 in a 3 step. I don't know how long you can leave it, my surgeon didn't rush me or anything, but most people I know had inflammation in the rectum. Some had it so badly that they were miserably uncomfortable, reminiscent of living with uncontrolled UC. Regardless of whether you have proctitis, you're definitely stuck with a couple trips to pass whatever forms in your rectum daily. With proctitis, it could be much more frequent than 2x and it could be bloody, urgent and cause tenesmus. Not how you want to live after surgery.
We have a member who had the rectum removed, but the surgeon left part of the anus and didn't sew her shut. She's struggled with some inflammation in that small piece. It's really not worth having it and having to have it checked out, or having to go to the toilet and sit there and push a couple times a day. We also have members who live with loop ileos for long periods, and they do well. I hated my loop personally. Mine was poorly functioning.
Co-moderator: Ulcerative ColitisCurrently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.
Post Edited (notsosicklygirl) : 11/9/2017 8:07:00 PM (GMT-7)