Has anybody ever gotten rid of their j-pouch because they felt healthier with an ostomy?
I had ulcerative colitis from 2004-2013 when I had a total colectomy and a temporary ostomy. I loved having an ostomy and I never felt happier or healthier. However in 2014 I got a j-pouch because I was 18 years old and I wanted to give it a try to see if I would feel just as healthy. My childhood gastroenterologist was very supportive and said that I could always get a permanent ostomy if I ever decided that the j-pouch wasn’t for me, no questions asked.
My j-pouch has not been everything that I was hoping it would be. I have received four pouchoscopies (every two years) since 2014 and I have always had cuffitis. My doctor would prescribe mesalamine enemas or antibiotics. Enemas have always irritated my pouch so we would usually stop and just stick to antibiotics. On top of cuffitis, I have dealt with fissures, hemorrhoids, fatigue, joint pain, and discomfort. So while none of these symptoms have been crazy bad, they do get in the way of my everyday life (sometimes because of anxiety and not actual physical symptoms).
My last biopsy from the pouchoscopy says that I have severe ulcerative colitis in my rectum (which has always been my biggest problem). I suggested to my new doctor that I wanted to get rid of my J-pouch and get a permanent ostomy. I explained that I have eight years with having a j-pouch but I have always regretted getting rid of my ostomy and I just want it back. I want to feel the freedom and energy that I felt when I had an ostomy. My j-pouch is also one of my biggest causes for my anxiety and other mental health problems. I also let him know that my decision wasn’t sudden and I understand the surgery isn’t simple and easy but I am willing to go through with it because I want the chance to make my quality of life better. Unfortunately, he wasn’t as supportive or accepting of my idea because of the fact that I am 27 and I’m not doing my absolute worse so he doesn’t understand why anyone would choose to get a permanent ostomy. The appointment was so bad that I ended up crying in the parking lot.
It’s been a few days since the appointment and I’m really struggling mentally. I have an appointment in one month because he wants to see if this is still my decision but I am terrified of having to explain myself again to him for fear that it’s going to cause another disagreement.
Sorry my post is so long, I guess I am just wondering if anybody has gotten rid of their j-pouch simply because they felt healthier with an ostomy?