After reading your story I feel so close to you. I’m so sorry you had to go through all that suffering, but glad you found your way to live your life and enjoy what you do. That’s what it is missing in mine. I can’t find a way yet. Not physically, not emotionally because of my JPouch “issues”.
My UC started when I was 21 years old. I spent half of my life in hospitals (4 or more relapses per year). Had my two hips replaced when I was on my 20’s (Prednisone excess). Finally after I tried pretty much everything, I “qualified” for the JPouch 5 years ago. I was so hopeful. My JPouch worked beautifully the first 5 months. Then blockages, Pouchitis, accidents, pain, so many nights laying on the toilet floor, ER nights, torturing NG tubes, etc. Finally I had to quit my job (with kids with special needs) that I loved so much because I just couldn’t function as a person.
Right now I’m trying to put myself together again since I was released from the hospital one week ago because of a serious blockage. Usually the afternoon is the best part of my day. I’m in a very strict diet now. Can’t eat much of anything. I really don’t go out when I’m sick, became a hermit. I had the best psychotherapist who helped me so much to deal with my issues, but unfortunately she retired and I still looking for one who who can help me as well.
When I’m healthy, I enjoy spending time with my husband and cute three dogs, going out to eat, and travel overseas to spend time with my family. I’m willing to get better because I’m an animal lover and enjoy volunteer at a dog shelter. At my 48 years old, I still hope I can find a bit of “normality” in my life, and keep fighting to not lose my JPouch.
Thank you again for taking time to write to me. I’m sure you are a compassionate and kind person and it make me feel so happy when a “poucher fellow” is doing well after all we have to deal. You deserve to enjoy life indeed! Keep it up!