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I was referred to this forum by a fellow Crohney from another IBD forum. She indicated that there is a high level of support here. From what I've seen in browsing through the site, I think she's right. Plus, this is the type of forum that is most easy to move around in. So, here I am!

I was only diagnosed with Crohn's disease in February 2007 but, in retrospect, given the fact that Crohn's effects you from your lips to your hips and beyond, I am convinced I have had IBD since I was a teenager. Throughout my life I have suffered with intermittent bouts of gastrointestinal issues (both upper and lower) coupled with lupus-like symptoms, excruciating bone, muscle, joint pains and diminished energy levels. Thankfully, only rarely did any of these occur at the same time. Things came to a head about three years ago, however, when I found it increasingly difficult (quite literally) to simply put one foot in front of the other. On a scale of 1 - 10, my energy level was most consistently about a 4 (+/-). My chief complaint to my primary care physician (internist) was simply "I just do not feel good." Do you know how frustrating that was, not just for him, but for me to not be able to articulate what was going on with me any better than that?

Needless to say, I got every sort of workup you can imagine: neurological, cardiac, colonoscopy, sleep lab, hematology, rheumatology, and everything in between. I should glow in the dark considering all the x-rays and various other scans I have endured. Sigh ...

February a year ago, I was admitted to the hospital with obvious GI bleeding, severe cramping, diarrhea and, you might have guessed, extreme exhaustion. Colonoscopy revealed a sizable ulcer at the illeocecal juncture and significant thickening in the wall of the cecum. Prometheus confirmed Crohn's and I was started on a regimen of Entocort EC with Pentasa. Uck ... I looked like I was 15 months pregnant and felt like I was going to pop. Because I am allergic to sulfa drugs, it was felt that the next best treatment approach would be Remicade. I have since (after five infusions) had adverse reaction to that (and now have auto-immune hepatitis) so am left again pondering what is the best treatment approach. I have put this question to my GI physician: What if I just grin and bear it to see if this remits on its own like it obviously has in my past? We are still not sure. I do know that I will be most hesitant to go with any of the new "power" drugs being approved for treatment of Crohn's. I will never again (actually, CAN never again) do Remicade and I will not attempt Humira. At the moment I am content with my little mixture of Prednisone and Entocort EC. We shall see...

I look forward to "meeting" you all! And thanks in advance for your support!
 
Welcome, hope you find all the desired support here. You are fairly new to the diagnosis like I am, I found out about 5 months before you, and had a week long flare about 6 months before diagnosis (which subsided on its own). I'm on Remicade at the moment, and in fact have my 3rd infusion tomorrow morning, I'm relying solely on that to kick me out of this flare, and am sad to see it didn't work for you.

Is there a reason you won't try the Humira, I don't know much about it but I see you seem to detest the thought and was curious, not that I have any insight either way since I don't know enough about it...

And also, careful with the prednisone, if at all possible, I'd try to eliminate that when possible. I'm trying to get off it myself.
 
Humira?

Thanks for the welcome, Benson! With regards to the Humira, what can I say ... I'm just an old dog, you know? At the risk of sounding melodramatic, the bottom line is this: The Remicade about killed me. I never imagined in all my life that at the age of 55 I would require assistance with all aspects of my daily living from toileting to cutting my food into bite-sized pieces to even dressing myself. I was wheel-chair bound outside of my home. I could not drive my car for over six weeks (of course part of that time I think I could have ... my husband just would not let me ;).) Prednisone has reversed all that and my LFTs are now within normal range.

The reaction I had to Remicade was one of the most obscure and was not even noted to be an issue with the drug until post-marketing analyses. Consequently, however, I now have autoimmune hepatitis in addition to the Crohn's. Humira is too similar a drug to the Remicade. It is simply not a chance I want to take. We began stepping down the Prednisone with the addition of the Entocort EC. I am hopeful I can maintain on just the Entocort by the end of April. And I hope I'm not "jinxing" anything by speaking too soon but I have to say that I am feeling as well right now as I have in quite some time. The most frequent issues I have are with my bones and joints. Yesterday is the first day in several weeks I have had to take pain medication during the day. I think I'm pretty blessed right now; I'm happy for each new day.

Again thanks for your response.

P.S. And besides, I'm a believer that beer is nature's most perfect food and prednisone is nature's most perfect cure! :beerchug:
 
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