Hi everyone! So I've posted in the undiagnosed club sporadically as I'm not a very frequent poster but I do come to this site to read up on what others are writing. Here is my story. I've basically had on and off symptoms of what feels like Crohn's since 2004, when i was 19. But initially it started with a systemic illness that resembled CFS and stomach issues were not my main concerns at the time. However, as years went by I started experiencing more frequent bouts of burning sensation in Right upper quadrant, right under the rib cage, accompanied with fatigue, mild nausea, and major eye issues which seem to come and go unrelated to my abdominal symptoms. My mom took me to a GI specialist who did an upper endoscopy, which came back normal and left it at that. She was convinced it was all in my head. As years went on I got more tests - CT scans, ultrasounds, upper endoscopies, HiDa scans to rule out gallbladder issues, and more recently a colonoscopy, which showed some non-specific inflammation. All the blood work that I've ever done has always been perfect, even today my CRP and ESR are well into normal levels despite my intensifying intestinal discomfort, so let me talk about my recent, over a year long "flare", if you will.
My latest year long flare started with severe fatigue and some unexpected nausea that I felt for days. I coincidentally started taking medication at the time for an unrelated issue whose side effects would often give people nausea, so I assumed it was all related to that. I stopped taking it and felt like my old self again, for about a week, and then came down with a really bad viral(???) infection, which basically made me feel like crap for months. Im guessing it also reactivated my presumed Crohn's. I am now having mouth sores, severe pain and burning pressure under my ribs, to the point where i cant eat much anymore, constant burning in my mouth and tongue, with my tongue developing strawberry-like appearance, terrible eye issues, constant fatigue, nausea, feeling faint like I'm going to pass out a lot of times, skin problems, hair falling out, severe sweating, overall tingling and burning sensations in my body. This has been lasting since Nov '11 and where typically my flares would be quickly resolved this one feels serious and i feel the situation is getting worse.
So I just came back from my GI today and I asked him for a pill cam test. He kinda laughed it off and said that was the only test I haven't done, and said that its an easy test. I said I beg to differ, I heard the pill can get stuck inside. He assured me that it's very rare and that I don't fit the typical profile of a person who would have a problem with this test. So I haven't scheduled the test yet, but I can't help but worry, given that every time I eat a solid meal now I get pains for hours on end, so if I swallow a pill, who knows what can happen? I definitely don't want to end up with unnecessary surgery but my did seems to have an attitude like it ll be a piece of cake. I definitely will express my concerns to him again before i go in for the procedure, but what do you guys say? Is the likelihood of the pill getting stuck really as low as he claims? I am beyond scared...am worried about how I should proceed but feel that this is a necessary test to do to get to the diagnosis...
Thoughts?
P.S. I also asked him about the possibility of Behcet, given that I discussed it with my rheumatologist a couple weeks ago and she seemed open to it. All my autoimmune testing has come back negative for the n th time, so it could very well be assumed that I can also have Behcet, given the burning of my skin, eyes, tongue, my mouth sores, skin eruptions, but I know these could occur in Crohn's as well. My GI seemed to think I'm more likely to have Crohn's given that I am partly Jewish, and it seems to run in our genes.
My latest year long flare started with severe fatigue and some unexpected nausea that I felt for days. I coincidentally started taking medication at the time for an unrelated issue whose side effects would often give people nausea, so I assumed it was all related to that. I stopped taking it and felt like my old self again, for about a week, and then came down with a really bad viral(???) infection, which basically made me feel like crap for months. Im guessing it also reactivated my presumed Crohn's. I am now having mouth sores, severe pain and burning pressure under my ribs, to the point where i cant eat much anymore, constant burning in my mouth and tongue, with my tongue developing strawberry-like appearance, terrible eye issues, constant fatigue, nausea, feeling faint like I'm going to pass out a lot of times, skin problems, hair falling out, severe sweating, overall tingling and burning sensations in my body. This has been lasting since Nov '11 and where typically my flares would be quickly resolved this one feels serious and i feel the situation is getting worse.
So I just came back from my GI today and I asked him for a pill cam test. He kinda laughed it off and said that was the only test I haven't done, and said that its an easy test. I said I beg to differ, I heard the pill can get stuck inside. He assured me that it's very rare and that I don't fit the typical profile of a person who would have a problem with this test. So I haven't scheduled the test yet, but I can't help but worry, given that every time I eat a solid meal now I get pains for hours on end, so if I swallow a pill, who knows what can happen? I definitely don't want to end up with unnecessary surgery but my did seems to have an attitude like it ll be a piece of cake. I definitely will express my concerns to him again before i go in for the procedure, but what do you guys say? Is the likelihood of the pill getting stuck really as low as he claims? I am beyond scared...am worried about how I should proceed but feel that this is a necessary test to do to get to the diagnosis...
Thoughts?
P.S. I also asked him about the possibility of Behcet, given that I discussed it with my rheumatologist a couple weeks ago and she seemed open to it. All my autoimmune testing has come back negative for the n th time, so it could very well be assumed that I can also have Behcet, given the burning of my skin, eyes, tongue, my mouth sores, skin eruptions, but I know these could occur in Crohn's as well. My GI seemed to think I'm more likely to have Crohn's given that I am partly Jewish, and it seems to run in our genes.