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Ulcerative Colitis
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Posted 4/26/2010 2:47 AM (GMT 0)
Hey everybody, I'm new to UC. 21 year old college student, male. Hopefully you guys can help me out, or at the very least provide a sympathetic ear. :)

My symptoms started around the beginning of March, and after a few weeks of dealing with my doctor's guessing games, I finally went to the hospital and they figured it out. So, I was diagnosed with UC about a month ago. They started me on IV steroids among other things. I was in there for five days, and when they released me I was prescribed 60 mgs of prednisone for a week, then 50 mgs for a week, then 40 mgs--tapering off in that fashion. I am also taking Lialda (4 pills a day). It was going okay for a while. I would experience diarrhea at seemingly random intervals, but there was a general trend towards improvement. Now, when I got to 30 mgs a week, all of my symptoms returned.It's basically as bad as it was before I went to the hospital: constant diarrhea, bloody stool, exhaustion, etc. I called my GI, and of course he wasn't around, but the attending told me to go back up to 40 mgs of pred a day for the time being and schedule and appointment.

This is a particularly stressful time for me with finals coming up, especially considering I'm supposed to graduate in two weeks. I suppose I need to tell my professors so they know why I've been flaking out on class. Anyway, does anyone have any advice on how to relieve my symptoms? Any feedback would be greatly appreciated. I've been looking around the forum, and there's a lot of helpful things. This is a surprisingly great resource--but unfortunately it's a ton of information to sift though, and I'm not exactly sure how much of it is credible.

Also, I don't know if this is on topic or not, but I'll go ahead and throw it out there. I was taking a medication called accutane for acne a while back. I stopped taking it six months ago, and after I found out I had UC, I googled it to see if there was any correlation. Turns out there seems to be a causal link between accutane usage and UC, at least from what I've read. My GI doctor was less enthusiastic about that notion, basically saying he's never seen anyone else with UC that's taken accutane. My immediate thought was, maybe he just wasn't looking. I was never warned about this by my dermatologist, or by the drug company. Should/can I do anything about this? Sorry for the long post!
Posted 4/26/2010 3:26 AM (GMT 0)
Pinkerton-I was also diagnosed my last semester at college. You absolutely NEED to talk to your professors. If you are very sick, you might be able to get an incomplete til you are prepared for the exams, or you could arrange for extra time in case you have to go in the middle of one.

It's really hard to tell what helps, apart from the meds. I find eating low residue helps while I'm flaring though. Less stuff to poop = less poop.
Posted 4/26/2010 8:09 AM (GMT 0)

And look towards your diet.  Only in the sense of giving your digestive tract a break.  Go mild and bland for a bit and see if that helps (it does me, but everyone is different) 

Remember BRAT:

Bananas

Rice

Apples

Toast

I recently was eating a slice of bread with peanut butter and my banana.  MMmmmmm tasty.  Don't eat stuff that causes gas or is hard to digest and that may help you recover faster.

Posted 4/26/2010 1:54 PM (GMT 0)
Hi Pink -
I have found probiotics to be helpful, and also rectal meds. The Lialda may not reach all the way to the bottom of your tract, and that's the hardest and last place to heal, so if you put medicine in at that end, too, you'll have your whole system covered. Rowasa enemas are good - they're a 5-ASA, like Lialda. I've also used steroid enemas when the Rowasa hasn't cut it for me.

Tapering off the steroids can be tricky; too fast and symptoms can recur. This is not uncommon, so try not to get bummed. A slower taper or less steep taper (maybe 5 mg at a time) might be helpful... maybe your doc has advice.

Yes, you need to talk to your professors. There is a brochure available at ccfa.org that's geared for teachers and school personnel (there are several good brochures at that site, actually) - I printed that "school" one out and gave it to folks at my son's high school. It even covers things like that sometimes we don't "look" sick when in fact, we are.

Should your symptoms become worse and really interrupt your schooling, you could look into a 504 Plan - we in the US can be protected by the Persons with Disabilities Act! This has saved my son's butt (so to speak) a few times when he has missed what the school would consider "too many" classes. So - I tell you this to hopefully relieve your anxiety and let you know there are all sorts of things to help you.

If you have more questions, ask away!
Posted 4/26/2010 3:59 PM (GMT 0)
Hi and welcome to Healing Well!
While I do appreciate jb2 saying that the moderator's input is especially credible, I do want to say that we're no more knowledgable than a lot of the "regular" members. So please don't take us more seriously than you would anyone else (unless we're talking about rule violations, of course!). I personally think there is some less-than-credible info on here from time-to-time, but with experience, you'll develop your own "BS meter," so to speak.

Anyway, I think you should definitely ask your doctor for rectal meds, specifically mesalaine enemas. They really help relieve symptoms for the majority of us. Also find a good quality probiotic supplement.
Posted 4/26/2010 5:34 PM (GMT 0)
Yes...rectal meds...rectal meds...rectal meds.....cannot say it enough.



Mesalamine retention enemas would be where to start...in the US, they're Rowasa....in Canada, they're Pentasa, Salofalk.



quincy
Posted 4/26/2010 6:03 PM (GMT 0)
Agree you should let your professors know what's going on. Anything they can do to ease the stress and pressure you're feeling will help you.

Personally, I'd take whatever level of steroids you need to get you over the finals hump, then you can focus on tapering. In my experience, you have better odds of tapering successfully if you add in other means of support/healing. As Q mentions, rectal meds are one option. You might also consider alternative/natural therapies. A high quality probiotic will help rebuild healthy gut ecology. Omega3 supplementation will help reduce inflammation. L-glutamine helps with gut healing AND helps reduce diarrhea. You'll want to watch your diet and get as much rest as you can.

Accutane and UC link? Search for "accutane and ulcerative colitis" and you'll find plenty of info. Here's one to start with: http://www.drugwatch.com/accutane/ulcerative-colitis.php Your GI must have his head in the sand.
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