First flare since diagnosis

Hi All,

I used to follow the forums quite religiously when i was first diagnosed in 2008 but since then I have been almost back to normal on the Asacol typically 1 formed BM per day. that was until the beginning of March when I began going twice per day which then slowly went down hill to more and more smushy consistency to full blow D with Blood to the stage I am at now getting up thru the night, which sometimes looks like I am just passing inflammation & blood (is that possible?) add to that I am continuing to loose weight, probably down to the fact that I am try to eat more plain food and cut out all chocolate and sweet things...feeling quite anxious and miserable at the moment while I wait for a GI appointment to see what they can do.

Sometime I wish they would just rip my colon out so that i can go back to a normal life, but the thought of hospitals and surgery scares me :-(

so currently trying to gain some weight to hopefully help my body fight this flare up. Any ideas on how to build up my weight, i am going to try and eat more things like pancakes, biscuits have more regular small meals.

When you flare up do you take time off work? I am currently taking a few days off to feed myself up a bit in the hope it will help along with the steroids (40mg per day oral & 2 pred foam enemas per day) but I feel really guilty about taking time off when for the most part of the day the steroids have kicked in and I do feel slightly more normal.

Sorry you are feeling bad, stupid disease!

Anyway, I was doing so great then started to decline when I tapered my enemas and what I did was go back to nightly with the enemas (and never miss one)  and I also upped my Asacol.  Doing that really helped me.

And I feel just the way you do about surgery...sometimes I think let's just get it over with but then they'd find the magic med to fix this darn thing. 

Hang in there, hope you feel better soon!!

     Yes, you did taper too soon.  I find that in order for the prednisone to really work, I have to stay at 40 mgm for one full week, then taper by 5 mgm per week thereafter.  The GI doctor hates me being on it but it beats going back into the hospital on the PICC line like I had to do in 08. 

     When I was first diagnosed in 98, I was sick and on prednisone and Asacol for two months.  I then enjoyed a two year remission, like you.  However, after the first year of remission, I decided I didn't need Asacol and stopped taking it.  Well, a year later, boom, flare.   The doctor then placed me on Colazal since my ulcerations are in the rectum, proctitis, along with the usual prednisone course (two months).  Another two year remission and then another flare.  However, I did stay on the Colazal.  I was placed on 6MP.  Another remission only for one year and then started flaring yearly.  6MP stopped working (if it ever really did work), Remicade failed and now trying Humira.  Currently flaring, on 35 mgm of prednisone, cort enemas (which I cannot retain), Colazal, initial injections of Humira one week ago, Canasa suppositories every other night (just started them up again).  Giving it till June.....if no improvement, out with the colon.

Absolutely take care of yourself and take off work if you have to!

I have been struggling in and out of a flare since last July and for months I pushed through work.  I was trying to do Rowasa at night AND again in the morning (which means waiting until your bowels are empty in the morning, which could be a couple of hours for us in a flare! Then using the enema, then holding it for an hour).   After all of that, go into work for a full 8 or 10 hour day.

I wiped myself out and should have just given my body a chance to rest.  I am completely type-A worker and could not stand the thought that the disease was dictating my life.  But.  It does.

Not to mention the stress of going into work (will I have to stop???)  being at work (is everyone on my floor aware i am going to the bathroom 15 times a day?  nice!).   I also should have been more honest with my boss - he has no idea what I am still going through but certainly expects the same level of performance.

Re: meds.  After my first flare, where I upped my ASACOL dosage, i tried to taper back down to my beginning dose....because i didn't want to be on so much medication.   And as GI predicted, i slipped back into a flare.   When you increase your ASACOL - or whatever- during a flare, you usually have to stay there to maintain remission.   Good luck!

That is what my GI has indicated.  Whatever increase gets you into remission becomes your new maintenence level.   This is only for for Asacol-type drugs, not prednisone or any other class of treatment.