MEDICATION FREE (maybe)….NOT Exactly BY CHOICE

Intro:

I am a longtime UC’er-a lifer,if you will- diagnosed at 15(had symptoms/issues as far back as I can remember), I’m 43, female and just finished another allergy(delayed allergic reaction) to Humira.

My Colitis Story:

So here it is… the crossroads again. As you can see from my med. list, I’ve pretty much been through all the meds. and then some. I have tried the SCD(something very close), but kid germs( I work in a school with pre-k thru 8th grade, spec. ed.) wore my immune system down and I had to go on Humira. It took forever to get approved, but finally I did as I was taking 60mg of pred.(with tons of side effects!) just to maintain the flare back in Dec. (out of work for almost 2months-lucky to have a long Christmas vacation!) The Humira did eventually work, but I could feel the side effects all along(had a stress test to be sure heart issues run in my family), similar to the remicade, but what choice did I have going 15-20X with lots of blood? I had already had a delayed allergic reaction to Remicade, gave up a gallbladder, but did have 3 pretty good years on it. (I also had a higher dose/every 4weeks.) Another ER visit-allergic to Humira… So now the crossroads again…but really what choices do we have left? Any thoughts,suggestions? Dr. wants me to try some of the old reformulated meds. just to see! I think the SCD just doesn’t work for some of us, but a diet close to that certainly helps and is healthier. Sorry, I tried to keep it as concise as possible, without too many details.
I wasn’t going to submit, but the $ gets doubled right now for CCFA contributions!!

My Colitis Medications:

Prednisone, prednisone, prednisone,(up to 60mg-built up tolerance) sulfasalazine, mesalamine, colazol, asacol, entocort/cortenemas, rowasa, 6mp(allergic), etc,remicade(allegic), humira(allergic), probiotics-now on the VSL#3DS(Rx )-I’m sure it has helped

Submitted by “UC Lifer” in the Colitis Venting Area




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One Response to MEDICATION FREE (maybe)….NOT Exactly BY CHOICE

  1. Hillel August 24, 2011 at 7:11 am #

    Although I’m not cured, I’ve found that a modified SCD has helped me a lot. Based on a lot of what I’ve read, I think carbs in general are the problem (in addition to in-balanced gut flora). I mostly eat meat/fish/chicken/eggs and vegetables and try to avoid fruits, nuts and dairy (besides the rest of the non-SCD stuff). For supplements I take probiotics and l-glutamine powder.

    Everyone’s different but after years of trying different things this seems to work the best for me. Hope you’re able to find relief form this terrible condition.

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