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Hello from a First timer. entocort, etc.

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Crohn's Disease
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Posted 4/2/2014 8:22 PM (GMT 0)
Hello,

I have been lurking on these forums for a while and I have finally decided to create an account. I previous been suffering from GERD since I was 19 yrs old and now I am 25. During an endoscopy they found small ulcers in my doudenum, which prompted them to do a colonoscopy and pill camera. They found the large intestine was fine, but my small intestines had all these small ulcers. It really explains why I have been experiencing so much abdominal pain. I still have these ulcers/inflammation after it was found about a year ago.

My doctor suspects that it is mild Crohn's, but he says there is no way to really confirm it as the blood work that he did to check for Crohn's came back negative. Is there any possibility that it could be something else?

I have been slowly wheening off Dexilant since I felt like my problem has shifted to my small intestines (pain in upper adomen). I am now on Pentasa 1000 MG x 4 days and probiotics (around 25 billion).

After the pill camera, my doctor wants me to go on Entocort. I am scared of trying Entocort because of the side effects and I am also at risk of diabetes. I also don't want to not be able to come off of it... I am curious about LDN or any kinda of treatment that has fewer side effects.

Any advice would be greatly appreciated.

Post Edited (AlanSh) : 4/2/2014 2:28:49 PM (GMT-6)

Posted 4/2/2014 9:14 PM (GMT 0)
I don't know what blood test your GI did that said it isn't Crohn's, but it doesn't sound right. There really isn't a "blood test" for Crohn's. There are some labs marketing tests (Prometheus) that say they can predict whether a person has one IBD or another, but they are not given a lot of confidence in their accuracy.

The best test is, of course, a biopsy, which is hard to do in the small bowel. There are some GIs who do a scope called a double balloon endoscopy that will allow them to take biopsies in the small bowel. You might want to look around for someone like that.

When you say that there were ulcers all throughout the small bowel and then that your DR wants you to try entocort, I am confused. Entocort really targets the terminal ileum. Above that and below that in the digestive tract I think you'd be overly optimistic to rely on entocort. And by the way, entocort does not usually cause significant side effects, but it is only meant to be used for a few months at most.

It seems to me you need a more systemic approach than entocort. Pentasa might work for you, but the data isn't very supportive. Do you have blood tests that show inflammatory markers? If so, you can use this as a tool to see whether Pentasa is helping you (and, of course, how you feel). If you don't feel significantly better after a month or two on Pentasa you should revisit your plan with your DR.
Posted 4/2/2014 9:46 PM (GMT 0)
Hello Kazbern,

I believe the blood test was to look for the inflammatory markers, but I believe it came back negative. I did get an biopsy of the duodenum and it showed chronic inflammation.

My small ulcers go throughout the small intestines from the doudenum to the terminal ileum.

He recently told me to increase the pentasa and after the pill camera which I did a month ago, he wants me to try entocort for 8 weeks.
Posted 4/3/2014 12:02 AM (GMT 0)
I was on Imuran when I also went on Entocort. The only side effects were slightly elevated heart rate and I ate more. I found that in the heat, is when I noticed the heart rate up.

My dad and grandpa were diabetics. I hopefully will not be.
Posted 4/3/2014 12:06 AM (GMT 0)
Entocort isn't nearly as bad side effect-wise as prednisone. I understand the apprehension with diabetes risk as I started having hypoglycemic episodes with blacking out while on long-term prednisone. I was considered by my GI as steroid dependent, but I was able to wean off after years of pred. I know I took Entocort for far more than 8 weeks--maybe 9 months, and it helped me to get away from the prednisone I had been on for more than a year and a half. But I had to taper very slowly from both steroids.

Eight weeks of Entocort from my perspective of having once been steroid dependent isn't as scary as other medications I've been on. It's always difficult to know which way to go with no guarantees that anything will work well.
Posted 4/3/2014 12:40 AM (GMT 0)
A lot of people with Crohn's don't have elevated inflammatory markers in their blood. Go back to your GI and ask for a fecal calprotectin test.
Posted 4/3/2014 1:34 AM (GMT 0)
AlanSh.
Entocort, My experience helped quite a bit. Other steroids are much more harsh. I am told I have cataracts from the steroids. Its the lesser of the evils to me. I opted for surgery last May.

Best of luck,
T
Posted 4/3/2014 2:30 PM (GMT 0)
Hello Kazbern,

Is there any reason to do a fecal calprotectin test after they did a biopsy of my doudenum and found inflammation?

@QuestionEverything,
Wow, sorry to hear that :|. Was the cataracts caused by Entocort?
Posted 4/3/2014 3:10 PM (GMT 0)
AlanSh, your original post said the GI did a blood test and then told you that it was negative for Crohn's. You said you thought this was a blood test looking for inflammatory markers. If you want to know whether you have inflammation on-going, and your bloodwork is negative but your symptoms persist, fecal calprotectin appears to be a much more sensitive test for inflammatory markers.
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