Oh my back!!!

I'm sorry you're feeling so badly and I hope you like your new GI.

However, your old GI was right, that the only true, permanent cure for UC is surgery. I honestly take comfort in that knowledge...if all of the meds quit working, I know I can have my darned colon removed and be rid of UC for life.

that sucks- why have you just started Asacol? Usually they keep you on it a while, prior to Remicade, at least. 2 weeks isn't very long for the infusion to last. I'm sure the new GI will give you tons more options than surgery, don't fear! And honestly, 5-6 episodes of D a day isn't too bad, unbelievable as that may feel. Hang in there 'til Friday- I think you'll be surprised with your new doc. Why no prednisone? Definitely give steroids a chance, they'll do wonders if you've never taken them before.

As an aside why I am not on any steriods and why I just started Asacol:

When I was originally diagnosed with UC, I was hospitalized. I was given IV solumedrol. My blood sugar went out of control, ended up needing insulin injections. They discharged me (when I was really no better, thanks to the lovely insurance company but this isn't the place to get into that) on 80 mgs of prednisone, Asacol 2 pills (800 mgs) 3 times per day, and I was checking my blood sugar and giving myself insulin injections 2-3 times per day depending on my numbers. I continued to bleed and go to the bathroom upwards of 30 times per day. I finally went back to the ER and was admitted again. IV solumedrol again, lots of enemas and supositories. Really no better on that protocol after 7 days in there. Finally (since I had been on the 'net while I was there and researching) I asked about Remicade. They reluctantly agreed to let me try, reluctantly because I'm a physical therapist and have to work with a lot of people every day and they didn't want me to get an infection as a result. I told them it was worth it to me to keep my colon. So I got my first dose in the hospital, DRASTIC improvements by the next day. Discharged home on only Prednisone as I had to taper off of it. It took months and when I was finally down to 15 mgs a day I wasn't needing insulin anymore, thankfully! Dealt with all the side effects, I couldn't sleep, I was irratable, gained a lot of weight (I needed to anyway as I was down to 105# from 135), lost 80% of my hair, etc...

Basically I was told that my UC is "steriod refractory" meaning that it doesn't respond at all to that kind of medication. I was fine from that first infusion (The first week of October 2008) until my last 8 week session. I started getting some blood on my formed BMs in the 6th week. It went away on its own, even before the next infusion.

Now this "flare" has been about 4 weeks long so far. Last night and This am was the worst day by far. The bleeding started again in my 6th week after the last Remicade infusion. I waited a week to call the Dr because last time it went away on its own. It gradually progressed to bloody D and finally I called him. As the place where I go for my infusions is a busy "Cancer Center" it was hard to get my appointment moved up. He managed to do it by only 2 days. I didn't get better right away as I had before. It took a few days, but then I was left with some urgency and really soft BMs a few times per day. I could live with that but it wasn't as good as it had been before so I called him. That's when he told me to go back on the Asacol and re-contemplate the surgery.

I just know from being on here and reading a lot of other stuff that there are other treatment options that we haven't tried. My current GI doc is just a community based general gastroenterologist. I asked him how many UC patients on Remicade he has and he said 2. That's when I decided that I was going to get another opinion. I made an appointment (and supprisingly it was only 4 days away) with an IBD specialist at the Cleveland Clinic. He sees only Crohn's and Colitis patients. I am sure that he will know a lot more and have other treatment options!

I called my Primary Care doc today and she wrote me a script for Ultram (a pain med that you can take that won't make you bleed). Oh, how much better I feel this pm after taking just one of those buggers!

Anyway that's the long story!

Jen

That sucks, I hope you feel better. Get some rest for now, and make sure to drink lots of fluids and try to get some calories in you.

jeez, what a mess.... I didn't read any of the linked articles, but from what you describe, no it doesn't sound to good for you! Although I'd imagine surgical intervention would probably be some measure of relief, at this point. Well you answered my questions- I was thinking you may have had some totally clueless old-school GI, but apparently not. Cleveland Clinic is the place to go- I hope they can give you what you're looking for! I think I'm probably steroid refractive by now, & last time I took pred I also got the pred induced diabetes. lovely. Thankfully the Remicade is still giving me 4-6 weeks of relief, so I'm sticking with it 'til the bitter end. I assume you're on the higher dose, 10mgs/kg? well Good Luck!!!! definitely keep us posted as to how things go. and read the ostomy forum here- it's a GREAT forum, very reassuring.

Hi, I noticed you just started asacol, ....When I have taken asacol....OH MY BACK Too!.....Asacol makes my back hurt so bad.

And my whole body aches. Pentasa makes it even worse for me...]

Thanks

Carmen