from a hospital room in Colorado,questions concerning future

This flare up landed me in my own room with a lovely view and a bed that weighs you on the spot. This last flare up started 6 weeks ago, 35 pounds of weight loss, 80 mg of prednisone that hasn't done anything and here I am. I don't really have a question but more looking for opinions on two things. One would be about having the surgery and experiences that people have had with it. Another question would be going on Remicade. I have never been on it before and was looking for peoples opinions about it. Thank you for you input.

mdbuckeye:

To help you or at least answer your questions could you please fill us in on your journey to the hospital bed.  When and how did you get diagnosed with UC?  What medications have you taken up until this point?  It would just help put things in perspective.  There are a lot of people here who have undergone surgery or have used Remicade but first things first.  What about filling out your signature.

I wish you the best and a speedy recovery.

MyUC

OK, thanks for the information.  I am sure a lot of people will start posting soon, there are a lot of helpful people here with good advice. 

 

Specifically when was last your visit with a GI doc?  And when was your last colonscopy and what information did it give?

 

MyUC

MDbuckeye,

I was in a similar place as you when I was first diagnosed. I was in the hospital with unrelenting bloody D. The gastro kept coming by and introduced me to the surgeon each day. I didn't want surgery...I had no idea what UC was, no idea about treatment plans, etc. I, too, was on the internet from my hospital bed.

I am the one that talked the gastro into Remicade. He at first was reluctant for me to try it, as I work in the hospital with lots of germs, etc. Finally he agreed. Either the remicade saved my colon or the IV solumedrol finally kicked in but now almost 2 years later, I still have my colon. Life isn't the same (and Remicade has been proven to not work for me) as it was before UC, but I am glad that I put off the surgery for now...maybe they will find a "cure" for us!

(You don't happen to be in Ohio, do you? With Buckeye as your name, that's what made me think...I know some good docs at the Cleveland Clinic!)

Was in your boat- no brilliant answers. Remicade induced remission in my daughter and kept her there for the past year and one half. This allowed her a normal high school experience without having to consider surgery. No real side affects of the drug- It is worth a try, and may not fully kick in 'till after the first few infusions. Evidence is showing that the quicker you get on it, the better you tolerate it. Also, it seems to work best in combo with the 6mp, although there are some additional risks for consideration. We we not ready for the surgical option, so this was liquid gold.
Best, K

Thanks festeris, I'm still open on what to do. Right now though I'm leaning towards surgery. The ten mark has hit me and the timing for me couldn't be any better as far having time to recover and so forth. Thanks all again for your comments and for the support you have provided. This website is truly great and has helped me a lot over the past two years.

I would be open to the Remicade if I were you.  I would exhaust all meds before I went to surgery.  However that is a personal decision for only you to make for yourself.

MyUC