1st in remission. I have some questions.

Little back story. 

I was hospitalized 9/09 and diagonsed with severe pan/UC and C-Diff.  Sent home after 9 days with a  PICC line of Prednisone and Asacol 800mg 2 pills 3x a day and meds for the C-Diff.  Doc told me that  Asacol would not work and I should be on a 6mp.  At that time I said no and wanted to give my body a shot to try the Asacol after getting off the Prednisone.

So here we are 5 months later and I am in remission a lot sooner then anyone ever thought!! Now what generally happens?  Do most people stay on the same amount of medication or they lower that amount?  I am also still on 5mg of Prednisone everyother day.

I am also wondering about weight gain.  I lost about 30lbs in 3 weeks when I first got sick.  I didn't have that to lose by any means and I am having a hard time gaining it back.  Is this normal and now that I am in remission will I be able to gain it back easier?  I have always been a very active person (runner) and hope to get back into that again this year.  I just worry about putting the weight back on and keeping it on.   

I understand that these are questions for my doctor, but I won't be talking to him for a couple of weeks so I thought I would ask here first.

Thanks much.  

I think you should DEFINITELY give Asacol a chance before moving on to 6mp. I was in a pretty nasty flare, too, and am doing fine on Apriso (same active ingredient as Asacol, just forumlated to dissolve differently), and use a mesalamine enema twice weekly. I've been in remission (ie, no symptoms and off pred) since May, and have absolutely NO symptoms.

When you go see your doctor, definitely ask about adding in a mesalamine enema for maintenance of remission. Studies show that people who use them twice weekly, in addition to oral meds, stay in remission for longer than those who only use oral meds.

Since you're not yet off pred, you might consider using them nightly for a couple of weeks, just to make sure you can get off the pred easily.

Also, I wouldn't lower your dose of Asacol until you've been off pred and are in a nice, solid remission.

I too lost a lot of weight while I was flaring (I was 25 lbs below pre-pregnancy weight by 3 months post partum), but I gained weight quickly once I was completely well.

Thanks for all the comments and suggestions.

My doctor is the one who originally wanted me on the 6mp right off the bat and I told him no way. I am so glad that I listened to my gut and did what I wanted to.

We are actually thinking of changing me from Asacol to another mesalamine because of the horrible hair loss I have had in just over a month. I have lost about half of my head of hair and he said it was from the Asacol. I am afraid that he won't change that now that I am in remission.

I know I should just be happy that I am healthy, but it is so hard when I look horrible. I am sticks and bones and have almost no hair. Oh well. I just have to keep telling myself one thing at a time and this is great news for now. Right?