Intro

Hi Everyone,

I'm new to the forum and just wanted to introduce myself. I was diagnosed with Crohn's in 1998 and have been on a roller coaster ever since. A bowel resection in '01 gave me a few years of remission, but I'm now 31 and have had active disease for the past 8 years for which my doctor and I have tried practically every drug known to Crohn's (most either causing a really bad reaction or simply not working). I'm currently on prednisone (unable to taper below 10mg), Humira and Methotrexate (neither of which my docs and I believe are working). I also tried Remicade in the past which didn't work for me and gave me a bad reaction. I recently started seeing a doc at a local university hospital who just did a colonoscopy showing my disease has progressed since last year (despite strict SCD, countless herbs, accupuncture, and the meds). Unfortunately, I don't qualify for the current Prochymal or Vedolizumab studies, which appears to leave me with a choice between Cimzia (not sure I'll respond to another anti-TNF since I haven't responded to others) or Tysabri (major fear of PML). I also haven't tried LDN but my new doc's not convinced it will be strong enough to work for my tricky disease (though she will prescribe it if I want). I've done a lot of research into these 3 drugs online and browsing through various other message boards. Just thought I'd join so I can try and learn as much as possible from others.    Not to mention this recent colonoscopy seems to have squashed whatever positive outlook I had going...so frustrating!!

I'm currently on prednisone (unable to taper below 10mg), Humira and Methotrexate (neither of which my docs and I believe are working). I also tried Remicade in the past which didn't work for me and gave me a bad reaction.

I recently started seeing a doc at a local university hospital who just did a colonoscopy showing my disease has progressed since last year (despite strict SCD, countless herbs, accupuncture, and the meds).

I also haven't tried LDN but my new doc's not convinced it will be strong enough to work for my tricky disease (though she will prescribe it if I want).

Sorry to see you suffer. You have tried almost everything, from conventional meds to alternative medicine and strict diet. If you decide to try LDN then look it up in the ulcerative colitis forum. Their posts seem to indicate that LDN may be more effective taken transdermally rather than orally. Hope it works for you.

Have you tried antibiotics? There is one theory that IBD may be caused by bacteria such as Mycobacterium paratuberculosis (MAP). Sounds far-fetched except it has been recently determined that stomach ulcers are also caused by bacteria. Maybe someday they will isolate the bacteria that causes IBD just as they finally found the culprit for ulcers. Apparently some of us have been helped with antibiotics such as amoxicillin or Cipro. Flagyl was key for me escaping my flare last year. Just remember to take antibiotics with generous amounts of probiotics.

Thanks for the responses all!! My holistic doc has talked to me about the helminth therapy which I have to admit really grosses me out. I also don't know that I like the idea of infecting myself with something else to treat the Crohn's. I'll be all for it if it works, but for that I need to see more studies.   Unfortunately, I couldn't tolerate Flagyll and other antibiotics didn't seem to work for me. I have been taking a ton of probiotics (S. Boulardii) though which seemed to help at first, but have kind of fizzled out now. My GI is calling me on Tuesday with the results of my biopsies from the latest scope and to discuss how we want to proceed with treatment. I have a nice long list of things to talk over with her. Right now I'm leaning towards trying the Tysabri for at least 3 months. Plus if I have to stop the Humira and Metho 3 months prior to the Tysabri maybe I could start LDN during that time and see how it goes...lots to mull over. Thanks again guys!!