I can understand your fears and concerns. I think keeping the tube in for a couple of months is a good idea. Don't worry, you will not lose your pouch. Keep the docs informed if you should develop any new pains, bleeding or fever. Please keep us posted.

Do you just have an abscess? How long have you had the pouch?

Sydney,
I am so sorry that this is happening to you...do they have any ideas why this has happened? I have no idea if the dog jumping on you could have caused this or not but for now you just need to be able to deal with the situation and unstress yourself...hopefully the drain will take care of the leak and you will heal up nicely...there is no reason to think that it will kill the pouch...for now, stay positive and relax...the stress will not help you...you may want to go onto a high protien/low carb diet with not too much fiber so that you need to intubate less and have less gas or need to pull/push the catheter in and out.
Hang in there
Sharon

I had a leak in my pouch right after it was constructed. I had drains put in and did not eat for a while while I was on parenteral IV nutrition. It ultimately healed up nicely and is functioning great 26 years later.

Good luck

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!

Sydney,
I would PM Jan and see if she can give you some informed input...this is above and beyond what most of us deal with here with k pouches...personally, I would follow the advice that they give you at the CC because most GPs have no idea how to deal with k pouches and fistulas...it is just not their competency...
Hang in there, I am praying that this thing heals itself
Sharon

Thanks Sharon

Can you tell me who Jan is? I didn't see her on this thread.

Thanks!

Thanks! I just spoke with Clevleand Clinic and both Dr. Shen (GI) and Dr. Dietz (Colorectal Surgeon/K-pouch specialist) said to start Humira again. He will take me off of it if I need surgery. I hope this info helps someone else in the future. I have been trying to get an answer to this question for over a week!!!

Thanks for the support

Great news! Always go to the experts...and don't wait around...it is your health that matters.
Sharon