Hi guys.
I've written a lot over the last couple of months. You have really helped me out, and I can't tell you how much I appreciate it. I promise that this is the last time I'll bother you all, especially since it now appears that I don't even belong here.
Basically, about seven weeks ago, I woke up in the middle of the night with severe abdominal pain. I used the restroom, and had what I thought was diarrhea, but then realized I was actually hemorrhaging. I'd had issues with pain, diarrhea, and constipation since I was a teenager, but was always too embarrassed to tell anyone about it, and just figured I had IBS. I was really scared of the tests that might be run, so I refused to go to the doctor and just dealt with it. This was the first time I'd ever bled like that, though. I was really scared and knew something was really wrong.
After spending a day at urgent care, followed by the ER, I was referred to a GI and had a colonoscopy. The first thing my doctor said afterwards was that I had Crohns, and she started me on lialda, donnatol, and a hydrocortisone enema.
However, when the biopsies came back, my doctor was confused. The biopsies indicated ischemia, rather than CD, but my doctor still felt it was probably CD, based on my history (joint pain and mouth ulcers, in addition to diarrhea and constipation), age (33), and what she saw on the colonoscopy and CT scan. She continued to treat me for CD, and later c diff as well (I had initially tested negative twice, she thinks I picked it up when I was on IV antibiotics in the hospital). She tested me for just about every infection and parasite known to man just to be sure, and then ordered the Prometheus IBD panel. In the meantime, my symptoms continued, and I saw her several times - she kept saying I had Crohn's, but that she couldn't really treat it (oral steroids, etc) until I was through with the c diff (I just started my third week of flagyl).
This morning, she called to tell me that the Prometheus test came back negative, meaning I don't have an IBD after all. She admitted that she no longer has any idea what is wrong with me, and referred me to another GI.
I'm terribly frustrated and confused, and was wondering if any of you had an ideas about this, or any experience with something similar. Throughout this entire ordeal, my ESR and CRP have been normal, but my platelets have been low (134 as of last week), my neutrophils have been low (29), and my lymphocytes and monocytes have been high (56 and 14).
I'm freaking out that something is really wrong and that I'm actually dying or something. I've had diarrhea since the first week of April, and am still having lots of crampy pain, especially in my left and lower right sides. My diet has left a lot to be desired. I just don't know how much longer I can keep this up. I couldn't get an appointment with the new doctor for three more weeks. I've lost 26 pounds (I was thin to begin with), and am really at the end of my rope emotionally. I had been relieved to know that at least the doctors knew what was wrong with me, and that they were treating it and that I would get better, but that's all gone out the window. You guys have been unbelievably helpful, and I'm sorry to have to ask yet again, but if there are any ideas out there, I'd be really, really grateful.
Thanks for listening.
Em
I've written a lot over the last couple of months. You have really helped me out, and I can't tell you how much I appreciate it. I promise that this is the last time I'll bother you all, especially since it now appears that I don't even belong here.
Basically, about seven weeks ago, I woke up in the middle of the night with severe abdominal pain. I used the restroom, and had what I thought was diarrhea, but then realized I was actually hemorrhaging. I'd had issues with pain, diarrhea, and constipation since I was a teenager, but was always too embarrassed to tell anyone about it, and just figured I had IBS. I was really scared of the tests that might be run, so I refused to go to the doctor and just dealt with it. This was the first time I'd ever bled like that, though. I was really scared and knew something was really wrong.
After spending a day at urgent care, followed by the ER, I was referred to a GI and had a colonoscopy. The first thing my doctor said afterwards was that I had Crohns, and she started me on lialda, donnatol, and a hydrocortisone enema.
However, when the biopsies came back, my doctor was confused. The biopsies indicated ischemia, rather than CD, but my doctor still felt it was probably CD, based on my history (joint pain and mouth ulcers, in addition to diarrhea and constipation), age (33), and what she saw on the colonoscopy and CT scan. She continued to treat me for CD, and later c diff as well (I had initially tested negative twice, she thinks I picked it up when I was on IV antibiotics in the hospital). She tested me for just about every infection and parasite known to man just to be sure, and then ordered the Prometheus IBD panel. In the meantime, my symptoms continued, and I saw her several times - she kept saying I had Crohn's, but that she couldn't really treat it (oral steroids, etc) until I was through with the c diff (I just started my third week of flagyl).
This morning, she called to tell me that the Prometheus test came back negative, meaning I don't have an IBD after all. She admitted that she no longer has any idea what is wrong with me, and referred me to another GI.
I'm terribly frustrated and confused, and was wondering if any of you had an ideas about this, or any experience with something similar. Throughout this entire ordeal, my ESR and CRP have been normal, but my platelets have been low (134 as of last week), my neutrophils have been low (29), and my lymphocytes and monocytes have been high (56 and 14).
I'm freaking out that something is really wrong and that I'm actually dying or something. I've had diarrhea since the first week of April, and am still having lots of crampy pain, especially in my left and lower right sides. My diet has left a lot to be desired. I just don't know how much longer I can keep this up. I couldn't get an appointment with the new doctor for three more weeks. I've lost 26 pounds (I was thin to begin with), and am really at the end of my rope emotionally. I had been relieved to know that at least the doctors knew what was wrong with me, and that they were treating it and that I would get better, but that's all gone out the window. You guys have been unbelievably helpful, and I'm sorry to have to ask yet again, but if there are any ideas out there, I'd be really, really grateful.
Thanks for listening.
Em
