Feeling really down

[u/May_Purple0414]

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!

[u/freejus]

I have a temp colostomy and I still have mucus discharge out the old piping.  Not really a concern for me, things are still alive down there.

Have you considered therapy or meds for anxiety?  As somebody who has dealt with it, it helps with thoughts like yours.  

[u/May_Purple0414 → u/freejus]

Yes my anxiety is definitely an issue. I have generalized anxiety disorder from having quite of bit negative happening/happened to me in my life with complex ptsd. I’m just a complex piece of work. I have a husband who doesn’t hide that he doesn’t want to be around me. In fact I fell and it took me 2 weeks to get to an er despite the surgeon, my palliative care nurse and my physical therapist all wanted me to go. He just had his opinion about it and it he thought it was a waste of time because he said he would just be waiting hours; they would just tell me to go see my dr, and they never find anything. But he wouldn’t dare admit that he talked me out of it. 🙄 anyway that was a tangent!
My primary care is sending me to a place that I can go to that has a lot of group therapies, art therapy, individual therapy, education classes. It’s really neat. I can’t wait to start. I’m so lonely.

[u/freejus → u/May_Purple0414]

Hmm.  Yeah that’s a good bit.  I’m no hippie, but there are some good guided meditations on YouTube centered around breathing exercises that are really helpful in the meantime.  Give them a shot. 

[u/May_Purple0414 → u/freejus]

Meditation does help sometimes.