This is going to be a long post but I'll condense it as much as I can. I've posted here before with aspects of my story. It's too long and detailed to post here.
Of note: I have severe bowel dysmotility (as well as gastroparesis), so my colonic inertia and PFD warranted an ileostomy.
I had five abdo surgeries in 1.5 years. All lap.
Loop ileostomy. Standard to test if I preferred it.
End ileostomy. Had an emergency at three months with an intussusception. It sucked my stoma deep into my body. Was changed to an end ileostomy. Surgeon took a risk and added extra permanent stitches in the abdo wall to ensure it "didn't happen again.
End ileostomy and colectomy. End was revised to take out the stitches. Stitches caused SUCH intense pain any time my bowel pooped (a lot). I was hospitalized for bowel rest on TPN for three months. Colectomy was decided as I knew I wasn't going to reverse, as well as I was about to get surgery for SMA syndrome. (didn't happen, long story).
Ileorectal anastomosis. New stoma was prolapsing a lot and bleeding a ton with big ulcers. Two choices were revision or IRA. I was SICK OF MY STOMA after so much hospital. I took a risk. World's worst idea. Suffered for eight months, surgeon said he wouldn't help me, lost 40 lbs (weighed 85lbs at 5'7.5", stopped eating completely, diarrhea and diapers 30+ times a day with PFD present).
End ileostomy. Found a new surgeon who also did k-pouches. Quite convenient -- only one in my country somewhat close by. He said I was too ill for k-pouch surgery since I was so sick. Wanted to keep it simple.
So, now:
I've had this ileostomy since March. It prolapses all the time. Common with motility disorders, I am ready. I also am having trouble with the bleeding again. I miss being my active self, and even being social. I was thinking about a prolapse surgery, but I had to be hospitalized with it a few months ago (couldn't get it back in), and my surgeon said that ileostomy prolapse fixes, especially with my motility disorder, have a high chance of happening again.
I am thinking about the k-pouch again. He told me when we first talked about it that 50% of people usually need fixes and revisions, but love having it so much it is worth it. I've read some peer-reviewed research that says the same. However, like everything in life, no one has a motility disorder and not sure how this will fare.
Worst case: I get it and go back to an ileostomy if it fails.
I've made a pros and cons list, but I won't add that here (I can if you want, this is already long, though).
I know many people here love their stoma and have no issues. Keep in mind I have four, and I also don't have IBD or cancer or diverticulitis -- much more common. Both my surgeons said motility patients are rare and unpredictable.
What would you try in my situation? I can give more info, list my pros and cons, and understand this is a much bigger surgery. I've been reading a lot about this for over a year.
I do have a talk with my surgeon tomorrow, but would appreciate feedback and hope that I get a lot of responses. Again, I realize this is long, I just really want to hear everything. And if you respond before I speak to my surgeon, please give me ideas for questions! I have already drilled him. I am not sure I want to fix the prolapse just for it to happen again.