So they did 2 CT scans. One showed what they thought MIGHT be a leak near the intubation site. But within 3 days that went away. However 5 days later I had an X ray and another CT scan. They found a hairline fistula in the lower end of the pouch. Not even visible on a CT scan but only when they inserted a dye. Somehow the dye was leaking into the pouch - so there must be a connection. I still have the drain in my gut and yesterday I noticed it was a yellow color - probably puss - which means infection. I'm still on my antibiotics (3 days left). I have been off of Humira for 4 weeks now and just last week I could tell that the fistula in the back of my leg/buttock (which previously closed up due to the Humira) is starting to come back. I can hardly sit on my left side. Last night - I felt gurgeling and I could hear air coming out of the tube and into the drain bag. Today the drainage is a dark yellow color. When I intubated about 30 mins ago, I noticed that the output is brown, however when it hits the toilet water - it's the same yellow color as in the drain bag. I am so scared that the fistula is getting bigger and that feces is coming through now.
Do any of you have answers about what to do? Here is my delima:
My local doctor is not an advocate of Humira and has never seen a K-Pouch before. He did not want me to go on Humira. But 3 docotors at Cleveland Clinic (familar with K-pouch and fistulas) advised me to go on Humira to close up the fistula and stop the inflamation. I was a new woman when I began my Humira. Fistula colsed up, I had a social and a love life agin! And then 2 weeks ago this abcess developed in my gut that needed to be drained. They say I will need this drain in for 12 weeks and it MIGHT heal on it's own. Since my antibiotic course ends in 3 days - should I start the Humira up again? If I have a fistula wouldnt the Humira help close it? As long as I have the drain in, wouldn't it make sense to let the Humira work on closing the fistula while the drain is working on removing the abcess? Since I have been off of Humira - I feel like I'm breaking down. I have contacted Dr. Bo Shen @ Clevend Clinic - he said Humira is fine with long term antibiotics. I called Dr. Dietz's assistant for the past 5 days asking when or if I should start Humira. She is supposed to get back to me today. I don't see him until Sept 19th. and I'm worried that the fistual is going to get bigger without Humira. Any advise or opions will be very helpful. It seems that if you ask three doctors a question, you get 3 different answers! This forum has been more informative than any of my doctors! I need your help guys!
