- Joined
- Jan 22, 2010
- Messages
- 11
Hi,
My name is Anne and for the past 7 months, I have pretty much succeeded in stumping every doc I am sent to, and still don't have any answers. I'll try to be brief as to what has been going on, but since June 2009 this has completely overtaken my life, so it may take a few paragraphs to explain.
I went to a outdoor rib festival in mid June, and that night at 2AM, I was violently awoken with extreme pain on my right side. Went to ER, where they thought appendicitis, but since no fever, or vomiting (only diarrhea), couldn't see appendix on CT scan, and blood tests came back ok, they weren't sure. After about 8 hrs, pain was getting better. But it still felt like something was swollen/or pressing on my right lower quad area from under my right rib to my hip area, and that puzzled them. They sent me home after about 12 hrs. Three days later I ended up back in ER after visiting primary doc for follow-up, since swollen/pressure feeling still there. More tests (gallbladder, liver, kidneys, spleen, etc), everything came back fine. In July they sent me to GI who did colonoscopy and biopsies showed deep tissue inflammation in the ilieum area. During follow-up with GI to go over colonoscopy results, he said he wasn't sure it was Crohn's, since although biopsie showed inflammation, I don't have the vomiting and diarrhea that is also part of Crohn's. And he said that Crohn's usually doesn't start as a violent episode like I experienced that night in June. He did try prednisoe for 1 week and said if that worked then we'll know it is Crohn's. But that didn't do anything to change the pain/swollen/pressure in my lower right quad area, so he thought might still be my appendix, so sent me to surgeon. She wasn't sure it was my appendix, so I was bounced between the surgeon and GI doc for nearly 2 months, while the pain/pressure/discomfort continued. In the mean time, more tests which came back fine (ultrasounds, HIDA gallbladder, barium x-rays, and small bowel follow thru), except for the camera capsule pill test which showed more inflammation/irritation from my stomach all through my intestines and small bowel. They took out my appendix in Sept and thought that would solve this mystery.
Well, it didn't, so I was back to square 1 again, with an added twist. Four days after my appendix surgery, my right eye was now swollen and painful. Eye doc diagnosed me with uveitis. Got the eye inflammation under control, but had another eye flare up on Thanksgiving day.
Went for follow-up with GI doc in Nov 2009, and he was still baffled and couldn't believe that nothing had changed, except now that uveitis is added to the mix. Personally, I was wondering how something would change, when I wasn't being treated for anything. He now wanted to do another colonoscopy to see if anything had changed. I refused, since I didn't see the point just yet when I still felt miserable with the continued pressure/discomfort, was not eating or sleeping, and it seemed the results would show the same thing. By now I was slowly figuring out that it was time for another opinion.
Had that appt last week with a new GI doc. She reviewed the test results and said that a lot of times Crohn's isn't easy to diagnose, but usually the biopsie results are what's used to help make a diagnosis. And that coupled with my capsule pill results and my 2 eye flare ups in 3 months with no prior eye issues, made her suspect Crohn's. But she couldn't say one way or another for sure whether or not this is Crohn's, but she did immediately start me on Entocort.
So right now, I guess I feel like I'm still in a limbo, not exactly sure what is going on, and why anyone can't get this pain/pressure/discomfort to subside. Not sure what I should/shouldn't eat since some days I seem to be able to eat anything, and then the next day anything I eat causes increased pain. I thought I was dazed, frustrated, scared and confused all at the same time after about 3 months of this, and now after 7 months, I don't know what to think anymore. The only thing I know for sure right now, is that I'm NEVER eating pulled pork again (that's what I ate that night at the rib fest ), since I'm pretty sure that food poisoning started all this fun.
I'm glad that I stumbled upon this site, since this seems to be a great group of people, in lots of different stages of this, with lots of different experiences. One of the many questions I have, is that I guess I'm not understanding exactly how Crohn's is diagnosed and why my situation (as I'm sure many of yours have also been) is so baffling to so many doctors?
I apologize for being so long-winded, and really tried to give just the cliff-notes version
. Thank you for taking the time to read a bit about my experiences in the past few months.
My name is Anne and for the past 7 months, I have pretty much succeeded in stumping every doc I am sent to, and still don't have any answers. I'll try to be brief as to what has been going on, but since June 2009 this has completely overtaken my life, so it may take a few paragraphs to explain.
I went to a outdoor rib festival in mid June, and that night at 2AM, I was violently awoken with extreme pain on my right side. Went to ER, where they thought appendicitis, but since no fever, or vomiting (only diarrhea), couldn't see appendix on CT scan, and blood tests came back ok, they weren't sure. After about 8 hrs, pain was getting better. But it still felt like something was swollen/or pressing on my right lower quad area from under my right rib to my hip area, and that puzzled them. They sent me home after about 12 hrs. Three days later I ended up back in ER after visiting primary doc for follow-up, since swollen/pressure feeling still there. More tests (gallbladder, liver, kidneys, spleen, etc), everything came back fine. In July they sent me to GI who did colonoscopy and biopsies showed deep tissue inflammation in the ilieum area. During follow-up with GI to go over colonoscopy results, he said he wasn't sure it was Crohn's, since although biopsie showed inflammation, I don't have the vomiting and diarrhea that is also part of Crohn's. And he said that Crohn's usually doesn't start as a violent episode like I experienced that night in June. He did try prednisoe for 1 week and said if that worked then we'll know it is Crohn's. But that didn't do anything to change the pain/swollen/pressure in my lower right quad area, so he thought might still be my appendix, so sent me to surgeon. She wasn't sure it was my appendix, so I was bounced between the surgeon and GI doc for nearly 2 months, while the pain/pressure/discomfort continued. In the mean time, more tests which came back fine (ultrasounds, HIDA gallbladder, barium x-rays, and small bowel follow thru), except for the camera capsule pill test which showed more inflammation/irritation from my stomach all through my intestines and small bowel. They took out my appendix in Sept and thought that would solve this mystery.
Well, it didn't, so I was back to square 1 again, with an added twist. Four days after my appendix surgery, my right eye was now swollen and painful. Eye doc diagnosed me with uveitis. Got the eye inflammation under control, but had another eye flare up on Thanksgiving day.
Went for follow-up with GI doc in Nov 2009, and he was still baffled and couldn't believe that nothing had changed, except now that uveitis is added to the mix. Personally, I was wondering how something would change, when I wasn't being treated for anything. He now wanted to do another colonoscopy to see if anything had changed. I refused, since I didn't see the point just yet when I still felt miserable with the continued pressure/discomfort, was not eating or sleeping, and it seemed the results would show the same thing. By now I was slowly figuring out that it was time for another opinion.
Had that appt last week with a new GI doc. She reviewed the test results and said that a lot of times Crohn's isn't easy to diagnose, but usually the biopsie results are what's used to help make a diagnosis. And that coupled with my capsule pill results and my 2 eye flare ups in 3 months with no prior eye issues, made her suspect Crohn's. But she couldn't say one way or another for sure whether or not this is Crohn's, but she did immediately start me on Entocort.
So right now, I guess I feel like I'm still in a limbo, not exactly sure what is going on, and why anyone can't get this pain/pressure/discomfort to subside. Not sure what I should/shouldn't eat since some days I seem to be able to eat anything, and then the next day anything I eat causes increased pain. I thought I was dazed, frustrated, scared and confused all at the same time after about 3 months of this, and now after 7 months, I don't know what to think anymore. The only thing I know for sure right now, is that I'm NEVER eating pulled pork again (that's what I ate that night at the rib fest ), since I'm pretty sure that food poisoning started all this fun.
I'm glad that I stumbled upon this site, since this seems to be a great group of people, in lots of different stages of this, with lots of different experiences. One of the many questions I have, is that I guess I'm not understanding exactly how Crohn's is diagnosed and why my situation (as I'm sure many of yours have also been) is so baffling to so many doctors?
I apologize for being so long-winded, and really tried to give just the cliff-notes version
. Thank you for taking the time to read a bit about my experiences in the past few months.
