- Joined
- Jul 10, 2010
- Messages
- 20
I have Crohn's. (Yaaay... wait, that isn't fun.) I apologize for the wall of text... (My original post didn't appear anywhere, so I am trying again.)
Last year I had surgery for a stricture that was causing blockages / pain / nausea / vomiting / etc. Fortunately the surgeon did not find a large diseased area, just a small area with a stricture that was closing off my bowels almost completely. I'm grateful that I did not have to lose several feet of intestines, but I did feel kinda silly that something so small was causing so many problems.
I went several months feeling much better overall until December when I started feeling symptoms coming back. I told my doctor who was slow to believe something was happening. (He initially blamed it on medication.) However, after I stopped taking everything without seeing my symptoms improve, he eventually decided to put me on some prednisone for a while. It seemed to help some, but the issues keep coming back. (Pain, nausea, vomiting, diarrhea.) Eventually he weened my off of this, and my symptoms continued to get worse.
This culminated in 5 separate ER visits / episodes in April/May. 4 of those times I was throwing up and couldn't stop, even with medicine. The last time was for pain that was radiating from my bowels into my shoulder.
My doctor has thrown every test at me he can think of doing, and my small bowel follow through definitely showed inflammation. But he doesn't want to believe I have a stricture again. Why I don't entirely understand, but apparently it is somewhat unlikely so close to a surgery. Although I was told the chance of it recurring so quickly was still greater than 10 percent, which as someone who deals with numbers regularly can tell you is a fairly significant percentage. (If only the chance of winning the lottery were this good.)
At the end of May at my last ER visit, the ER doctors ignored me for about 3 hours, which isn't a good way to make someone in terrible pain very happy. However I didn't complain. The ER doctor was not impressed at my frequent visits, but he gave me a high dose of prednisone (40mg) along with Cipro/Flagyl. This combined with an entirely liquid diet helped immensely. I started to feel much better, even though I still have a constant stitch (or what feels like a small knife) in my side in the lower right quadrant.
My GI weened me off of the prednisone over several weeks, and I started to get hungry again. Very hungry. I had worked myself up to a sandwich and a half a day (meat and bread only), and I thought I was finally doing better. Last week I tried to move on to more real food. My first good meal in a while (Mmmm spaghetti) went down well, and it came out the other end. (Victory!)
However, after a few days of eating more food than liquid I started getting nauseous / having lots more pain. The last doctor visit I had (not to my GI), they actually felt a mass in my abdomen right where the pain was centered. (This felt very similar to what my surgeon felt/identified before he operated on me...)
I honestly feel like my GI doesn't believe me. He (well, his nurse) even said I shouldn't be having issues for this long. I scheduled an appointment with a different GI, but I can't get in to see him until August 28th. I'm going back to a mostly liquid diet, as annoying as that can be. But I don't know what else I can do about this situation. I am simply left hurting and angry.
The last couple of days I have been exhausted, sleeping way more than usual, and just generally feeling terrible. I'm sure there are people that have it worse, but this just sucks. I'm on a dizzying array of medications / supplements to try to help the situation, but it isn't improving. Any ideas would be helpful.
Last year I had surgery for a stricture that was causing blockages / pain / nausea / vomiting / etc. Fortunately the surgeon did not find a large diseased area, just a small area with a stricture that was closing off my bowels almost completely. I'm grateful that I did not have to lose several feet of intestines, but I did feel kinda silly that something so small was causing so many problems.
I went several months feeling much better overall until December when I started feeling symptoms coming back. I told my doctor who was slow to believe something was happening. (He initially blamed it on medication.) However, after I stopped taking everything without seeing my symptoms improve, he eventually decided to put me on some prednisone for a while. It seemed to help some, but the issues keep coming back. (Pain, nausea, vomiting, diarrhea.) Eventually he weened my off of this, and my symptoms continued to get worse.
This culminated in 5 separate ER visits / episodes in April/May. 4 of those times I was throwing up and couldn't stop, even with medicine. The last time was for pain that was radiating from my bowels into my shoulder.
My doctor has thrown every test at me he can think of doing, and my small bowel follow through definitely showed inflammation. But he doesn't want to believe I have a stricture again. Why I don't entirely understand, but apparently it is somewhat unlikely so close to a surgery. Although I was told the chance of it recurring so quickly was still greater than 10 percent, which as someone who deals with numbers regularly can tell you is a fairly significant percentage. (If only the chance of winning the lottery were this good.)
At the end of May at my last ER visit, the ER doctors ignored me for about 3 hours, which isn't a good way to make someone in terrible pain very happy. However I didn't complain. The ER doctor was not impressed at my frequent visits, but he gave me a high dose of prednisone (40mg) along with Cipro/Flagyl. This combined with an entirely liquid diet helped immensely. I started to feel much better, even though I still have a constant stitch (or what feels like a small knife) in my side in the lower right quadrant.
My GI weened me off of the prednisone over several weeks, and I started to get hungry again. Very hungry. I had worked myself up to a sandwich and a half a day (meat and bread only), and I thought I was finally doing better. Last week I tried to move on to more real food. My first good meal in a while (Mmmm spaghetti) went down well, and it came out the other end. (Victory!)
However, after a few days of eating more food than liquid I started getting nauseous / having lots more pain. The last doctor visit I had (not to my GI), they actually felt a mass in my abdomen right where the pain was centered. (This felt very similar to what my surgeon felt/identified before he operated on me...)
I honestly feel like my GI doesn't believe me. He (well, his nurse) even said I shouldn't be having issues for this long. I scheduled an appointment with a different GI, but I can't get in to see him until August 28th. I'm going back to a mostly liquid diet, as annoying as that can be. But I don't know what else I can do about this situation. I am simply left hurting and angry.
The last couple of days I have been exhausted, sleeping way more than usual, and just generally feeling terrible. I'm sure there are people that have it worse, but this just sucks. I'm on a dizzying array of medications / supplements to try to help the situation, but it isn't improving. Any ideas would be helpful.
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