M
MERF
Guest
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!
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!
.) Prednisone has reversed all that and my LFTs are now within normal range.