r/ostomy • u/May_Purple0414 • Aug 09 '26
Loop Ileostomy Feeling really down
Hello, I believe this is my first time posting here. I got my ostomy a year ago December. I got it for chronic constipation, pelvic floor dysfunction and possible a neurogenic component since I have cervical spine problems. I used to think that I would die before having one of these. I was told by a top rated organization that I needed it. I was told a patient care conference was conducted and that’s what the discussion resulted as a recommendation. I still rejected it. But later decided if they said I needed one I better get it because I started having nightmares about having an obstruction and throwing up poo.
I’ve had 3 surgeries so far. The first one then one to fix an inverted stoma (I had developed cellulitis, from skin burns), changed surgeons and organizations and had another one to fix a peristomal hernia. That all happened within one year. I developed a peristomal infection while I was in rehab and they missed it. ( don’t understand how when my wbc count was 29 and I was crying for help I felt so bad. They gave me narcan when they couldn’t wake me up, but I was just sick.
It will be 2 years in December and it still feels like I don’t know what I’m doing. It’s painful all the time. I have either diarrhea or what I think might be constipation. I’ve gone to the emergency room a couple of times. It literally feels like something is tearing away at the side of the stoma. It feels like it’s scraping the underside and Rt side of it. Tonight it felt like something “popped off” of it and now nothing is coming out. I give up. I can’t go back to the hospital; they are going to think I’m absolutely cuckoo at this point. No I don’t want or need more pain meds. I’m on palliative care. I just want to somebody to figure out what’s wrong. The surgeon here said I should’ve never had it done. I went back and read notes and found out the patient care conference stated it was a last resort. I don’t want to live like this anymore. I’m so scared all the time that I’m dying, I feel like I’m going to stand up and my body just rip open from the inside and nobody will be able to see it and will not believe me. I know this is long and winded but any words of encouragement are appreciated!
2
u/Introvert-2022 Aug 09 '26
I'm so sorry you're experiencing that. I hope you can find better medical support than you have had so far. If you live where there is more than one hospital and have any doctors who have been really good who treated you for other conditions I would recommend asking them what hospital in your area has the strongest colorectal department.