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Ulcerative Colitis
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Posted 7/22/2010 2:47 AM (GMT 0)
Hi I am new to the forum, so please forgive me if I do something wrong.

I was recently diagnosed with IBD in June. I have had blood in my stool on and off for a few months prior but was away at college and couldn't get scoped until I went back home. My GI at home thinks it's Crohn's, but my GI at school thinks it's UC. My dad has had UC for the past 6 years and recently (last 6 months) has finally gone into remission after a VERY VERY tough course. I hope I don't end up on the same path.

Mostly, I have just been very discouraged. I am on 40mg of Prednisone and Asacol. I am also doing a course of naturopathic treatment that worked very well for my dad. After a few weeks of treatment, I got MUCH better, but then quickly slipped back into flareup and have been pretty down for the past month or so. Does anybody have any suggestions for keeping my spirits up? I'm 22 years old and missing out on all my social activities because I'm afraid of the bathroom curse. I just need to hear that it will be ok. Any inspiring stories?

Thanks.
Posted 7/22/2010 3:06 AM (GMT 0)
It will definitely get better once the dust settles and the diagnosis becomes more clear. Getting a more definitive diagnosis would help weigh the treatment options better. Maybe I'm wrong, but the biopsies and location of the inflammation make the diagnosis fairly straight forward in most cases. Not sure why the Docs can't agree. For one thing, oral prednisone isn't always enough to get a major flare under control. Occasionally, I.V. steroids are needed to get into remission initially.

If I were you, I wouldn't rest until I got a clear diagnosis, then I would research the disease as much as I could to familiarize myself with it and with the treatment options.

You will feel better when you get a bit of certainty, then you can move forward getting it treated. The treatment options work well for most people, so the prognosis is good.

Most people with Crohn's or colitis live full, satisfying lives with few restrictions. It probably seems a bit bleak and overwhelming right now, but it definitely will get better.

All the best, and keep us posted...

Post Edited (C_G_K) : 7/21/2010 9:13:29 PM (GMT-6)

Posted 7/22/2010 3:12 AM (GMT 0)
Well the GI at home suggested Crohn's because the inflammation was scattered. But the GI at school looked closely at the pictures and considering that the diagnosis was done "early" (doesn't feel like it to me), she said it may be that the inflammation is so little in some places it looks like it isn't there.

From my understanding, treatment is essentially the same. Steroids, mesalamines, and stronger stuff if needed.

Has anyone tried the Prometheus blood test to see which diagnosis it is? My doctor suggested this, but insurance doesn't cover it, so I want to know if it's really worth it since treatment for Crohn's and UC is essentially same.

Thanks for the encouraging words. It's just been a lot to take in and being at school alone away from my very supportive family is of course making it that much harder.
Posted 7/22/2010 3:30 AM (GMT 0)
How long have you been on 40mg?
Posted 7/22/2010 3:35 AM (GMT 0)
Since last Tuesday July 13.

Before, when I went into the mini-remission that I described, I was only on 20mg prednisone. But when it returned, GI put me on 40.

How long should it be taking?
Posted 7/22/2010 3:48 AM (GMT 0)

morethanuc said...
Since last Tuesday July 13.

Before, when I went into the mini-remission that I described, I was only on 20mg prednisone. But when it returned, GI put me on 40.

How long should it be taking?

It takes me about two weeks or a little longer at 40 mg to get rid of the diarrhea. For me 20 mg would do little good.
Posted 7/22/2010 3:55 AM (GMT 0)
I think it all depends. I was intially put on 40mg and that wiped out my symptoms very quickly. I then tapered down to 2.5mg and relapsed, honestly, once I got under 10mg, I started feeling unstable but didn't have real symptoms so I kept tapering. After that, I had to go back up to 15mg and taper from there again slower (2.5mg instead of 5mg). That time I tapered down to 1.25mg and had another relapse. This time the relapse was very resilient and even when I went up to 15mg, it didn't subside. I had to go back up to 40mg!!! At that point, I thought I would never improve. It took probably a full 10days at 40mg to relieve my symptoms. Now I am tapering again and of course starting to get stressed out about relapsing. I am feeling okay right now and I recently started 6mp so hopefully that helps keep things at bay.

How many Asacol are you taking each day? Have you tried enemas or suppositories? What did your scope show?

I don't think you can consider yourself in a remission until you're successfully off prednisone shakehead

Posted 7/22/2010 5:58 PM (GMT 0)
Thank you guys for your feedback.

Just talked to my GI and we are going to increase prednisone to 50mg starting today to see if we can finally get this thing under control. I wanted to avoid it, but I don't think there's any other option.

I'm taking 3 Asacol HD in the morning and 3 at night. Not sure if I really believe that it's helping yet, but we'll see as time progresses =). I'm also using hydrocort enemas once a day. But I think they just end up making me gassy in the morning. Still, I don't want to stop anything in case it sets things further back.

My scope showed "patchy" inflammation starting at rectum throughout colon. There was no inflammation in small intestine. The reason I put "patchy" is because my GI at school insists this is a sign that things were caught early and not a sign that this is Crohn's. Biopsies were taken and path lab suggested Crohn's though, so still not sure.
Posted 7/22/2010 7:29 PM (GMT 0)
Asacol is very effective for most people, but takes weeks to kick in. Give it some time, and it will help you when you try to taper off the prednisone.

There is also something called indeterminate colitis which has features of both Crohn's and colitis.
Posted 7/22/2010 8:36 PM (GMT 0)
Thanks C_G_K. I will bring that up with my GI at the next appointment.
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