I have a different situation than many of you, but long story short, I have a defective digestive system and because my colon, rectum, an anal sphincter don't function properly, I electively got an ileostomy and have had nothing but issues. Diet is still awful, but that's besides the point. Pain is finally getting somewhat under control (I have chronic abdominal pain).
I have considered getting reattached at the rectum (IRA procedure) and just dealing again with my shitty pelvic floor. Prior to surgery, I had to take a huge cocktail of drugs each day and basically did a colonoscopy prep for 5 hours, then fasted (mostly or liquids) until dinner, where I would eat my calories then do it all again the next day. This sounds okay, but it was awful and painful and I couldn't work or function as my bum drizzled stool often.
Anyway, this is my stoma timeline:
- late June 2019 - got loop ileostomy as a trial; had some issues, but not too many since it was still new
- August 2019 - had many issues with random swelling and lots of pain. Felt like blockages. Still on liquid diet
- late September 2019 - many blockages here and there (still mostly liquid or pureed diet); random days of loads of blood from junction, despite wafer not rubbing. Very frustrated
- October 2019 - huge blockage, hospitalized, resolved within week
- October 2019 - two days after being home from hospital, stoma completely retracted, distal loop sent poop to bum, lots of diarrhea, emergency surgery -- found some sort of stricture caused by who knows what in my intestine -- changed loop ileostomy to end ilestomy
- October 2019 - horrible healing, lots of pain, huge stoma, frequent blockages, lots of swelling 4 weeks later on CT scan, couldn't eat.... was hospitalized for on TPN to figure this out
- November 2019 - found SMA syndrome, still on TPN, still in hospital
- December 2019 - late December decided to do colectomy as I would need the colon out in case they did SMA surgery. Revised the stoma for a third time
- Post-surgery December forward - was hospitalized until February. Moved from TPN to feeding tube to some food and stoma seems to be working except...
New stoma is very long and at 3 months post-surgery, the darn thing prolapsed. I got it back in but worried about recurrence. My doc made my abdominal wall opening quite large this time around to try to accommodate any issues from last time. So that definitely could add to it.
Still having trouble eating but that is my digesting system and not this stoma.
Pre-surgery was very active and can't do many things anymore.
Thank you for reading, but here's the thing. Do I even try IRA? I am worried it will be even worse. Obviously my doc doesn't want to trial surgeries now that i have had three in eight months! Will this ostomy EVER work out for me? I am on eggshells now for another prolapse!
My brain is going to explode, like I said. I understand that it takes awhile to get used to the ostomy, but as I have written, I have had nothing but issues with it.
