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Frustrated Update

I've been absent from here a while and thought I'd update. After 6 weeks on Entocort and little help, on top of flaring again, my GI added an anti-biotic, Xifaxin, and a pro-biotic, Align. I've been on the new medication (very expensive) for a week. With the entocort I was having better bm and almost no d with mucus a couple times a week, until I hit a flare and I got d about 2 times a day, which is not as bad as before any treatment.
I'm continuing the entocort, but I really wish my GI would put me on something stronger. He isn't convinced I have CD and think it may be "diarrhea predominate IBS", so he doesn't want to give me the more toxic drugs. Xifaxin has been treated for both IBS and CD so I guess it's a compromise.
I started losing weight again, I can't eat more than one meal a day, for the past 5 days. I have been taking more days off work and the tramadol is not working for my pain anymore. It's too intense, even though my bms are formed, it's painful to pass them, or I can't pass them at all and I am constipated for a while.

On the bright side, if this is one, my Rheumy is great. I had and appointment with him last month, and I have a follow up next week. He was so thorough it astonished me. He even gathered records from my past doctors to help figure things out. I got a ton of bloodwork done and some x-rays. Answers are out there, I hope. I just can't take this pain any more, this run down. I need a break from this illness.
How long will you be taking Xifaxan, or are you finished? I took it twice, and it did me a lot of good. Sorry you are having pain passing bms. That sounds rough. I hope your rheumy can figure something out if the GI can't.


Super Moderator
Dahl, I'm so sorry to hear you're still struggling and feeling so poorly in spite of these medications. :( I really hope your rheumy can figure something out for you. Is your rheumy still looking at possible Crohn's, or is he investigating other autoimmune illnesses too? Illnesses like Addison's disease and Lupus can cause IBD-like symptoms so those might be worth looking into. Good luck and hang in there. I'll keep you in my thoughts and am hoping you can get some real answers and relief soon. Sending you a big hug!
I feel how you do as well. I've been on Entocort for months now, with little improvement in symptoms. I'm thinking that the Entocort isn't really doing anything for me either. I posted my story on the main IBD page, but will give some updates here too, so as to not confuse people!

I'm also in the process of getting multiple second opinions, since no one seems to know what is wrong with me.

Do you have inflammation? Has your GI tried Pentasa?

I hope they find what is going on with you and you feel better soon!

My issues:
right side abdominal pain
diarrhea 8-12x/day
weight gain (80lbs over 3 years)
joint point

Currently taking:
Pentasa 4000mg
Entocort 90mg
Prednisone 40mg titration
Aciphex 20mg