Hi guys,
I've posted quite a bit about my lovely ordeal in other threads, so I'll give you the short version here: I've been sick since April. Serious pain/cramping, diarrhea, bleeding, and the like.
The doctors can figure this thing out. I had a colonoscopy two days after this all started, and my GI immediately said it was Crohn's. However, the biopsy results came back the following week, and they said the pathology was consistent with ischemic colitis. My doc thought this was unlikely, due to my age (33), and put me on lialda and a hydrocortisone enema, still thinking Crohn's.
About two weeks later, the doc ran more tests, because I was getting worse, not better. I tested positive for c diff, which I had previously tested negative for.
Around that time, I had the Prometheus IBD panel run. When the results came back negative, my doc sent me to an IBD specialist for a 2nd opinion. The specialist did not think it was Crohn's, based on the biopsy, my bloodwork, and Prometheus results. His theory is that I had the c diff all along (that the first test was a false-negative), and that it, along with IBS, caused all of my problems. He said the patholigist who worked on my biopsies could have easily confused ischemia with c diff. He told me to stop taking the asacol (had switched to that earlier from the lialda), which I did, just this past Friday.
Two days later, on Sunday, I woke up at 6am, violently ill. As sick as I was when this all started. I went to urgent care, and saw my GI today. She scheduled me for a sigmoidoscopy tomorrow.
My doc isn't sure about the IBD specialist's theory. Before this happened, the last time I was on antibiotics was probably two years ago, and I had no other risk factors for it. That, coupled with the first (negative) test is "giving her pause." They re-tested for c diff at urgent care on Sunday, and it was negative. My doc also said that it was suspicious that I got sick immediately after stopping the asacol. However, my bloodwork throughout this whole thing has been inconsistent with IBD - my platelet, RBC, and WBC counts have all been low, and my ESR and CRP have both been consistently in the normal range.
Her plan is to take a bunch of biopsies tomorrow, and hope that they give us some answers. I'm really sorry for the long post. It's 4am and I can't sleep because I'm all sorts of nervous about the procedure tomorrow. If anyone has any ideas about this puzzle, I'd be glad to hear them. I'm just so, so tired of being sick. I've lost 26 pounds, and have been hypokalemic for weeks. Recently, I've started fainting - probably low blood pressure. And I'm almost always in pain. And they still can't tell me how this happened. I know that you all are, or have been in similar and worse situations, and that makes me sad.
Anyway, thanks very much for listening. I hope that you are all well.
-Em
I've posted quite a bit about my lovely ordeal in other threads, so I'll give you the short version here: I've been sick since April. Serious pain/cramping, diarrhea, bleeding, and the like.
The doctors can figure this thing out. I had a colonoscopy two days after this all started, and my GI immediately said it was Crohn's. However, the biopsy results came back the following week, and they said the pathology was consistent with ischemic colitis. My doc thought this was unlikely, due to my age (33), and put me on lialda and a hydrocortisone enema, still thinking Crohn's.
About two weeks later, the doc ran more tests, because I was getting worse, not better. I tested positive for c diff, which I had previously tested negative for.
Around that time, I had the Prometheus IBD panel run. When the results came back negative, my doc sent me to an IBD specialist for a 2nd opinion. The specialist did not think it was Crohn's, based on the biopsy, my bloodwork, and Prometheus results. His theory is that I had the c diff all along (that the first test was a false-negative), and that it, along with IBS, caused all of my problems. He said the patholigist who worked on my biopsies could have easily confused ischemia with c diff. He told me to stop taking the asacol (had switched to that earlier from the lialda), which I did, just this past Friday.
Two days later, on Sunday, I woke up at 6am, violently ill. As sick as I was when this all started. I went to urgent care, and saw my GI today. She scheduled me for a sigmoidoscopy tomorrow.
My doc isn't sure about the IBD specialist's theory. Before this happened, the last time I was on antibiotics was probably two years ago, and I had no other risk factors for it. That, coupled with the first (negative) test is "giving her pause." They re-tested for c diff at urgent care on Sunday, and it was negative. My doc also said that it was suspicious that I got sick immediately after stopping the asacol. However, my bloodwork throughout this whole thing has been inconsistent with IBD - my platelet, RBC, and WBC counts have all been low, and my ESR and CRP have both been consistently in the normal range.
Her plan is to take a bunch of biopsies tomorrow, and hope that they give us some answers. I'm really sorry for the long post. It's 4am and I can't sleep because I'm all sorts of nervous about the procedure tomorrow. If anyone has any ideas about this puzzle, I'd be glad to hear them. I'm just so, so tired of being sick. I've lost 26 pounds, and have been hypokalemic for weeks. Recently, I've started fainting - probably low blood pressure. And I'm almost always in pain. And they still can't tell me how this happened. I know that you all are, or have been in similar and worse situations, and that makes me sad.
Anyway, thanks very much for listening. I hope that you are all well.
-Em
