Whats it like living with a j pouch?
I had a J pouch for 4 years. At first it was lovely, being free off all that "baggage". I probably went to the toilet about 10 times a day....but this was much less than I did before. I wore two piece bathing suits...showed scars and all and didnt care!! After about three years I developed some pain, it was so hard to describe but felt almost anal on the left side and shot down my left leg as well. I was treated for sciatica. I got a little relief. After a few months that same pain surged to the point that I was on major pain meds and had to make an emergency visit to my surgeon 3 hours away. He noted my pain level and discomfort.....I wasnt one to complain...... He ran every test he could think of. NOTHING showed up except a rather 'hot' spot on my PET scan. Obviously something was going on in there but couldnt been seen on x ray and scans. Our guess was scar tissue. But it got to the point where it didnt matter what caused it, it had to stop. Just stop. Doctor diverted the small bowel back to an ileostomy and the pain immediately lessened. Follow up PET scan showed a huge decrease in activity. So our best guess is that scar tissue was growing and pressing on a nerve causing my pain. Originally I was supposed to go back to the j pouch but due to some other procedures I had to have done, the sphincter muscle was damaged and a reconnect is not possible. I am okay with that! Either way....I had to give it a try. I did. I do not regret it.
Thanks for the reply. I am going for the j pouch and i hope it all goes well. I have got used to having a bag but still hope for life without it. I can pretty much get a full nights sleep at the minute and hope im not up during the night with a j pouch or trying to find a loo during the daytime. Ive never met anyone with a j pouch so havent had the opportunity to ask. I know everyone is different and some have good/bad experiences. I just feel the need to go for it as i need surgery either way and if i dont try it i will always be thinking about the what ifs. Recovery from open surgery is hard as im in construction so need to be revovered asap
Been living, existing with pouch for 19 years. Today I was dagnosed with reumatoid arthritis. Another no colon side effect...yay. Hate living with this contraption inside me. It has ruined my life.
How has it ruined your life? Why did you not go back to an external bag if its so bad?
It made employment difficult as going frequently usually led to dismissal or lay off. My marriage suffered and died. Depression from all of it. Here in Canaduh we arent allowed to get it switched. Ive tried and the gov won't fund it. They maintain that it is working so that's that.