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Crohn's Disease
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Posted 2/28/2012 9:07 AM (GMT 0)
I started having symptoms in February of last year. It started with severe diarrhea (nothing at all was staying in)...I went to the doctor who told me it was a kidney infection. Fast forward to June (I was VERY ill by this point and down 30 lbs) and my colonoscopy by my GI doctor. I was first diagnosed with mastocytic enterocolitis. (Its rare, and is caused by mast cells in the stomach being over produced)

I continued to lose weight and have symptoms (but actually after my colonoscopy, my D stopped) so my doctor decided to run the Prometheus IBD test on me. It came back positive for Crohn's. So he scheduled me for a small bowel follow through which found nothing. The following month I had an upper GI, and it found a hiatal hernia and duodenitis.

My doctor then decided as a last resort to do a capsule endoscopy which found the inflammation in my small bowel which 1 year later led to my Crohn's diagnosis.

He just prescribed me Asacol HD 800 mg 3x daily, which I haven't started yet.

My fatigue for the past year has been the absolute worst. I have no energy for ANYTHING hardly. Second to that is the joint pain. My bowels seem to be quiet for the moment, and I've actually been more constipated than anything.

Just wondering how you all cope with the fatigue and joint pain...and wondering if you all still have it when you think you are doing better??!

Thanks to you all!!!!
Posted 2/28/2012 1:21 PM (GMT 0)
MendyV, I really think you need to talk to your DR about the meds. Asacol is active in the colon, and since your pill camera showed you have inflammation in the small bowel I fear this choice will not be effective for you. Pentasa is another 5-ASA med that IS active in the small bowel and might be a better choice.

Your GI can also put you on prednisone right now, or entocort if you want a higher cost drug that has fewer side effects, to quickly reduce the inflammation in your small bowel. This will also relieve your joint pain and resolve your fatigue very effectively.

I use sulfasalazine to help with my IBD and the joint pain that I had. It's an old arthritis med that has been found to be very effective for people with inflammation in the bowel that includes arthritic pain. It does have some unpleasant side effects (headache) so it's not for everyone, but since joint pain was my primary complaint for many years, I am glad to be on it.
Posted 2/28/2012 10:32 PM (GMT 0)
Welcome Mendy!,
I actually had to leave school today because it was raining horrriably where I live & my joints were on fire...Apparently I ended up following asleep in first period & my friends told the teacher I was sick & she called my dad to pick me up...Next thing I knew my classmates were carying my books & things to the office & I was climbing into my dad's car. I just woke up after a 6 hour long nap.
Sometimes you need to give yourself a break & try not to push yourself too far. My stomach this morning was quiet but my joitns were going crazy(I've also been constipated too)so I thought I was going to be fine but I wasn't apparently. I take folic acid, probiotics, Zinc & Vitamin B-12 and the B-12 has helped me a lot with energy! Sometimes it doesn't cut it(like today)but most of the time it works (=!
Posted 2/28/2012 11:57 PM (GMT 0)
Hi Mendy. Quick question: have you looked into SCD? I'm not trying to push it, even though I just referenced it in another post. Just wondering because you might find it interesting, and a good community for support.
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