Wow. I so appreciate you all for posting here. I am becoming a bit depressed and scared before my scheduled redo pouch (in 2 weeks). I know I don’t want to live with the ostomy—it’s horrid. But I’m wondering if the second pouch will really be worth it. I had a bad first pouch—never had a good result. Chronic need for loperamide and diphenoxylate, even tincture of opium, and chronic abdominal and pelvic pain because my first pouch leaked and left me with all kinds of problems. And I had cuffitis constantly. And a surgeon who didn’t help fix what he messed up.
Much better surgeon this time, tons of revision experience. He was really upset to see what the first guy had left me with, and it couldn’t be salvaged, so second pouch it is. He didn’t know til the ileostomy surgery, when he found a big mess.
6 months of a loop ileostomy has been awful. I have really sensitive skin and am constantly itching, with horribly irritated skin in the area of the wafer—and this is the only one that doesn’t give me frank hives. So I know I don’t want to live with this. I admire those who can. I think part of the issue is that I’m allergic to so many substances that the only adhesives I can tolerate don’t allow me to swim or soak in a tub. I have to cover my pouch and wafer completely with plastic wrap to shower. It just seems ridiculous to have to do this forever.
But reading what people have been through with the second pouch is terrifying. I read my surgeon’s publication on his first 500 revisions. It was frightening. He doesn’t discuss these things with me, so I have to do my own homework, but part of me wishes I hadn’t. Ignorance might just be bliss. Fear is causing me to develop a serious anxiety... and I am not excited about anal leakage, strictures, and all the other goodies. Not to mention the chance of sepsis again—knowing my luck... And how long will the pouch hold up after going through all this? No way to know. Am I just prolonging the inevitable?
Anyway, thanks for helping me once again see that I am not alone in my existential angst. No great alternatives. I have to hold it together for my family and pretend I’m ready and that it’s no big deal, but inside I am dreading this so much—the poor quality pain control, the variable care, the whole miserable experience. I feel like I have PTSD—I shake and cry just thinking about having to be in that hospital again. And it will be another difficult time with the ostomy because of swelling, and then I still have the takedown and the time for the pouch to adapt til I know if it was worth it. I don’t think I’m ready for any of this, but somehow I have to be.
On the other hand, whenever I regret having had the first pouch and the whole mess, I think about a coworker’s son—he had his as a teenager, while mine started in my 30s. He and I were never in remission, even on all kinds of nasty meds. But he could never bring himself to accept even a temporary ostomy so he could undergo a colectomy. And nobody helped him reach that point or really told him the consequences of his choice, at least according to his mom. Because I know the meds are horrible, I jumped at the recommendation for surgery. It didn’t go well, but then again, I’m still alive seven years later, and despite this current bout of self-pity and depression, I’m able to take care of myself and live on my own, even with my limits. The poor guy never got to have a career or a love life; he ended up living at home with his mom, because he was too sick to make it on his own, and he just died from lymphoma, at the age of 26, because of ten years on biologics. He suffered through PSC as well because of years of uncontrolled UC and ended up in liver failure at the same time as his lymphoma started, so he suffered a lot before the end.
Compared to that, even a permanent ostomy starts to look ok. Okay, my crying jag is over. For now.
Wishing all of you the best in your journeys... knowing all of you are going through as much or sometimes more will hopefully help me keep a stiff upper lip and just get through it.
Take care,
Athena