I'm brand new to this community and to the J Pouch experience. I was diagnosed with UC in 2004 and struggled to keep it controlled until I finally had my colectomy in June of this year, had the takedown in September of this year. Throughout I had constant unexplained lower back pain. They told me before the takedown that the pain was from the pouch not functioning the way it would eventually and that it might be pushing on muscles around it causing spasms. I accepted that, had the takedown and the pain increased. Finally last week my doctor ordered a CT with contrast to see why the pain wasn't going away (I've had at least 2 other CTs that showed nothing wrong with the pouch). Turns out I have a leak in the top of the J Pouch along the staple line. It's very very small, but caused infection and inflammation around the area - causing the back pain. I was put in the hospital the next day and put on IV antibiotics, antifungals, and TPN (meaning no eating or drinking, all nutrients are coming through IV). My doctor is hoping the tear will heal itself and not require surgery. I got out of the hospital Monday with home health helping me with the IV stuff. My follow up CT is a week from today. I'm just wondering if anyone else has been through this? I can't find any information about this on the web. What are my chances that I will avoid surgery? I'm terrified for the CT scan to show the tear is still there. I'm just looking for someone to tell me something!!!

Kim,
You were very wise to have followed up on this.
I think this is not as uncommon as you think and maybe if you look up jpouch leaks online you may find more information regarding it. I do know that these leaks can heal on their own as your doctor indicated and I would try not to get too concerned (I know easier said than done) about this as I do not think you will lose your
pouch over it. You are taking all the correct precautions as is your doctor/surgeon. Best of luck.

Thank you for your response. I've googled "j pouch leaks", "j pouch perforation", and a few other variations, but mostly come up with things like "I had to have surgery and got a j pouch because of bowel perforation" or something like that. I appreciate you taking the time to give me some encouragement and, believe me, it is needed. I'm keeping busy - even going to work - to keep my mind off of things. I know I have a great surgeon and have no worries there. I've had so many complications from this surgery. This one is just the latest and I am just ready to have the positive experiences I'm reading about on some of these boards. I know they're coming, but can't get here soon enough! Thanks again.

Hi KimR,
I too have leak at he back of my pouch but this was discovered before the takedown so I have to keep the temporary ileo until it's healed. Now I have developed a fistula and an infection which they are not sure if related to the leak or not. I had an MRI today and am awaiting the results.

What I am trying to say is that apparently leaks are quite common but they usually heal by themselves if you can avoid infection.

Hi KimR,
Sorry to hear about your trouble. I dont have anything encouraging for you but I too developed a leak from the staple side (what they call the blind end of the loop). This over time has developed into a pelvic fistula (Jpouch connecting to the pelvic region). I have waited for 8 months and this still has no signs of healing. Plan that my surgeon is thinking of is to repair the Jpouch by restapling the blind end.

regards
Abhi

Thank you both for your responses. Georgiegirl - good luck with the MRI. I hope you hear good news. And to Abhi, good luck with surgery. I may be in the same boat after CT scan. At least I feel healthy finally. Granted I'm 5'10" and weigh 129 lbs, but I don't hurt! I almost forgot what that was like. I just fear going backwards with another surgery. Very possible with another surgery I'll have Ostomy back. Ugh.

Wow as time is getting closer to follow up CT scan I am more and more nervous. I am having a hard time keeping my mood up. TPN sucks and am thinking if I get bad news (meaning the leak hasn't healed itself and they want me to continue TPN and total bowel rest) I may opt for surgical repair. Morale is low, especially with Thanksgiving coming up. I'd love to eat my foot I'm so freaking hungry and it's only been 10 days of no food or drink!