Hi CDF~
I as diagnosed with lupus at the tender age of 17, and ten years later, started having gut troubles after getting a bout of gastro on a cruise ship. About a month after that, I woke up one morning to find the area around my gallbladder to be tender, then painful, then agonising as the weeks progressed. I went to a US hospital and was tentatively diagnosed as having gallstones by two very tired doctors doing a dodgy bedside ultrasound. I went back to Australia, had a proper ultrasound and CT, and no stones could be seen - only a thickened/inflamed upper right colon.
Since then, my guts have been in anything from mild discomfort to floor-writhing, wretching agony, with no answers as to why. Bloods and urine and stool tests are all normal. CTs and x-rays and ultrasounds show inflamed inguinal lymph nodes and occasional visible colonic inflammation, but nothing definitive. The pain never moved from that one spot until about a month ago, when the area around my appendix/terminal ileum joined the fray and now hurts worse than the original site. Antibiotics help when it gets particularly bad, for some reason.
Today involved yet another trip to the hospital. After days of agonizing pain and worry about the chance of atypical appendicitis (because I have consistently tested negative for infection), I went in and had a CT scan which showed everything to be 'normal' - even if my pain is regularly a 7 out of 10 on the hospital scale.
The frustrating response of the doctors I've seen is 'you have IBS'. As far as I know, IBS doesn't entail pain in specific sites which don't wander or shift, for one, or sharp, hot, stabbing pains which aren't affected by voiding. In fact, it generally makes the pain worse! I also get crops of mouth ulcers, despite not having any detectable vitamin or mineral deficiencies.
I have read a number of posts on this forum and have gained much from reading other people's stories. I am not sure what I have, but I don't think its IBS. It could be a manifestation of lupus attacking my gut, but as I am being treated for lupus and have it fairly well managed, I am doubtful. The fact that the pain responds to antibiotics makes me wonder about Crohn's Disease - because I don't have any signs of H. Pylori, either. I've lost a fair amount of weight since this began.
Are there others here who have this weird combination of normal bloods/urine/stool tests, normal radiography results and other tests, but with severe pain in particular spots? I've been seeking a diagnosis for nearly 9 months now, but no luck. I have heard hearsay about some people having a very long and difficult road to a diagnosis of Crohn's, and wonder if anyone here has had a similar experience to what I've described.
I as diagnosed with lupus at the tender age of 17, and ten years later, started having gut troubles after getting a bout of gastro on a cruise ship. About a month after that, I woke up one morning to find the area around my gallbladder to be tender, then painful, then agonising as the weeks progressed. I went to a US hospital and was tentatively diagnosed as having gallstones by two very tired doctors doing a dodgy bedside ultrasound. I went back to Australia, had a proper ultrasound and CT, and no stones could be seen - only a thickened/inflamed upper right colon.
Since then, my guts have been in anything from mild discomfort to floor-writhing, wretching agony, with no answers as to why. Bloods and urine and stool tests are all normal. CTs and x-rays and ultrasounds show inflamed inguinal lymph nodes and occasional visible colonic inflammation, but nothing definitive. The pain never moved from that one spot until about a month ago, when the area around my appendix/terminal ileum joined the fray and now hurts worse than the original site. Antibiotics help when it gets particularly bad, for some reason.
Today involved yet another trip to the hospital. After days of agonizing pain and worry about the chance of atypical appendicitis (because I have consistently tested negative for infection), I went in and had a CT scan which showed everything to be 'normal' - even if my pain is regularly a 7 out of 10 on the hospital scale.
The frustrating response of the doctors I've seen is 'you have IBS'. As far as I know, IBS doesn't entail pain in specific sites which don't wander or shift, for one, or sharp, hot, stabbing pains which aren't affected by voiding. In fact, it generally makes the pain worse! I also get crops of mouth ulcers, despite not having any detectable vitamin or mineral deficiencies.
I have read a number of posts on this forum and have gained much from reading other people's stories. I am not sure what I have, but I don't think its IBS. It could be a manifestation of lupus attacking my gut, but as I am being treated for lupus and have it fairly well managed, I am doubtful. The fact that the pain responds to antibiotics makes me wonder about Crohn's Disease - because I don't have any signs of H. Pylori, either. I've lost a fair amount of weight since this began.
Are there others here who have this weird combination of normal bloods/urine/stool tests, normal radiography results and other tests, but with severe pain in particular spots? I've been seeking a diagnosis for nearly 9 months now, but no luck. I have heard hearsay about some people having a very long and difficult road to a diagnosis of Crohn's, and wonder if anyone here has had a similar experience to what I've described.