Coach,
Is the drug you're talking about Remicade? Some are also trying Humira. You can do research on it, but it's very expensive and there are a lot of potentially bad side effects. There have been people on it for years and do very well with it, yet some people build up resistance to it quickly. I was one of those who took every medication available risking the side effects, but my UC got so out of control it nearly killed me before they took out my colon. But then I don't know if I could have made the decision for surgery without trying everything first.

Remicade...that's it! It is expensive. My wife's co-worker said he was paying close to $700 out of pocket each time until recently when insurance started picking up a bigger chunk. The last visit he had he only paid $47. I really think I'm about done medicating. The toxins and side effects are starting to bother me. I'm on Azasan now (and Prednisone temporarily) which my Dr said leads to a higher risk of Lymphoma. I just don't think I want to risk all of this plus the good shot I have at colon cancer. Call me crazy, but I'm thinking I might want to see my grandkids one day. Matagrano, I have definitely considered doing the surgeries in different off seasons. I'd almost HAVE to do that. The off seasons we used to know don't exist anymore. We, basically, go year round now. Even our guys who play other sports workout during the day. I figure if I have the 1st surgery and create the pouch I can go from there on what my next step is. I know I may be asking this question on the wrong board, but is there anyone here who prefers the bag to the pouch? Why or why not?

Coach,

I have lived with a bag for the past three years and I've had no problems. I never had the j-pouch. I went in to surgery to have it created and next thing I knew I was waking up to be told I cannot have one (it was determined then that I have Crohns not UC). I would have like the chance but it wasn't in my cards.

The bag hasn't slowed me down. I'm in sales and I have been a top producer since the operation. No one know I have the bag unless I tell them.

Anyway that's my 2 cents
Erica

Coach,

Erica's suggestion of spacing out your surgeries might work well for you.

I think for those of us who have had both surgeries with the first one being a j and the second the bag, we considered both decisions very carefully and only turned to the bag (or returned to it, in some cases) when there was just no hope of the pouch working, so we're not a representative sampling of folks who are successful with either or both. I'm one of those. I'm still struggling a bit with other issues now that I have a bag, but I wouldn't go back for the world. I had a really tough time with many surgeries and a couple of pouches, and I can do so much more without suffering now that I have a permanent bag.

Partly your decision may turn on your age. I was 56 when I made my decision to try a pouch rather than the bag initially. I got second and third opinions from big teaching institution docs, and they all prefer to do bags on people over 50 as statistically they are just more successful. I was kinda ****y, in great shape (not sick with UC, but had mild dysplasia and 40 yr history of UC, mostly in remission), healthy and very active with a physically demanding life off-grid, so I KNEW I'd be fine with a pouch. Hmmmm, I could have listened more carefully! In the end, it's such an individual decision. Even trying a loop ileo while your pouch rests can't tell you how you'd do with a permanent ileo becuase the two experiences are so different, with many people having trouble with loops, and most doing fine with permanent bags. You're doing the right thing by asking lots of questions. You might ask the same ?? on the ostomy forum, too.

Best of luck with your decision!

Barbara