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Hopeful News from Gastro 2day!!

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Crohn's Disease
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Posted 2/8/2012 2:38 AM (GMT 0)
Well...my local Dr.s told me "You have Crohns"....after a scope showed severe ulcerations, and my permethius labs came back positive for Crohns they said...and said I needed to see a gastroenterologist....So we decided to go to Barnes Hosp in St Louis....He said...after reviewing everything, an talking...."I cant sit here and tell you you have crohns...but, I also cant tell you you dont"   Apparently by SED rate was high, bit not teriible at 35...he said the permethius di show things consistent with Crohns...but some of the markers they see with Crohns in the test were not there.  But, that it also tests some sort of genetic markers and they were there.  I have been taking Aleve everyday for about a year...said it could be from that, or an infection that caused the ulcerations.  SO he started me on sulfasalazine...but the dosing on the pill bottle from the pharmacy is different that what I thought he said, so I better check on tha before I start it...they are 500mg pills and it says to take 3 pills 2x a day....I thought they said 2 pills 3x day...any of you ever taken this?  What was/is your dose?  He will rescope after 60 days on the meds...and then hopefully be able to tell me more. 

I hate not knowing, but I like the possibility that it may not be Crohns!!  But wow..I have sooo many symptoms of what you all talk about as a fleir...with the extreme body aches and tiredness, but maybe that would also happen with a colitis from infection, or other reason also...  Confused...but happy!!  Hope the meds help!   LOVED THE DR!!!

Posted 2/8/2012 2:57 AM (GMT 0)
I take sulfazine. Both of the dosing instructions you talked about in your post are 6 pills/day. That's a good dose, I guess, but you should know that one of the most common side effects with this medicine is headache. My DR had me start at just one pill a day, then wait a few days, go to two and then go to my max dose of 3 pills/day. I take two pills at night and one in the morning. I would suggest that you start your meds tomorrow but start slow, say one pill in the morning and one at night. Wait a couple of days and then two in the morning, two at night. Finally add a midday dose. PLEASE check with your DR about this, too. If you get headaches DON'T take any NSAIDs. I find that tylenol works just fine on the headaches I get from this medication.

You should also know that there are other medications in the same family as sulfazine that don't cause such side effects. I like sulfazine because it has resolved my joint pain along with some of my bowel issues.

Finally, many of us with Crohn's spent years trying to get a completely solid diagnosis. I still don't have one; my chart probably just says "IBD."
Posted 2/8/2012 3:07 AM (GMT 0)
kazbern...thanks for the info...Yes I will no longer be using NSAIDS!!! I love the possibility of joint pain releif also, I suffer terrible with that!!! But, I HATE headaches, although I have several over the last few weeks. Does it bother you with headaches alot??
Posted 2/8/2012 4:57 AM (GMT 0)
i take 3 pills a day-all at once in the morning and i still have joint pain and stomach issues r worse
Posted 2/8/2012 4:36 PM (GMT 0)
Kimmysue, I wake up with a headache about half the time. Tylenol works great on them, though, so I have become a frequent user. I'm only taking 3 pills a day, so YMMV.
Posted 2/9/2012 8:47 PM (GMT 0)
Kimmysue, that's great news. I really hope you don't have Crohn's. I take sulfsalazine too, 3 pills in the morning, 2 in the afternoon, and 3 at night with a 500 mg dose. The sulfasalazine actually gave me headaches in the beginning, but they eventually went away. I didn't take anything for them though.

I love Barnes-Jewish too. I was sent there from my first hospital when they were trying to figure out what I had. They're very professional, and I really like the team effort that goes in from being a research hospital. It's great that you found a doctor you like, that makes a huge difference. Good luck, and hopefully you don't have Crohn's.
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