Hey everybody!
I have my J-Pouch for a few years now (I've been diagnosed with UC in 2010 and the J-Pouch came about three years later) and more than a year ago I've been diagnosed with a fistula.
In July of last year I've had a surgery to put a loop drainage into the fistula. The doctors that made this surgery advised me do have the pouch taken down in favor for a stoma. As I'm only 24 years old I didn't want it though. I started with Ustekinumab (Stelara) in October (I guess) and I am feeling better now. The pain near the anus/rectum is much less or actually I'd say it's gone and I'm only using the toilet about 4 or 5 times a day (before that it's been 6-7 times). I've also started working out again (at least a bit). This is the short recap of my history.
I've had an appointment with my doctor today and he told me that stem cells that should be applied to close the fistula (Cx601 should be the name) will take some more time to get approved for usage. That is actually the therapy I was hoping for but now I have to wait a few more months. That obviously is bugging me as I have to clean myself with the shower after each bowel movement (due to the loop drainage I don't feel like I clean everything with toilet paper). Additionally I currently have some king of leakage (rectal incontinence). I hope it's due to the loop drainage as well and I hope that this will get resolved when I get the fistula resolved and the loop drainage removed (but I obviously don't know whether there are other problems as well).
Right now I'm using gauze dressing pads to deal with the leakage of the fistula and especially the rectal incontinence. I put a sanitary towel in my underwear and the gauze dressing pads directly between my cheeks on the anus.
Do you guys have any other ideas of how to deal with this whole situation? I guess with the fistula I can do nothing but wait (if you have any advice please tell me) but with the leakage there might be something I haven't thought of.
Additionally I've met someone who doesn't know about this problem right now and I don't know if there is a "right" way to tell something like this 
I have seen Butterfly Body Liners for example but they don't ship to my country.
Thanks a lot in advance!
