Hi All!
Have had a very scary two weeks in the hospital with my 16 yo daughter. I initially thought she had picked up a bug and had terrible stomach pain, nausea and diarrhea in the middle of the night. Suddenly she began bleeding and I took her straight to the ER. They did a CT scan and noticed lots of inflammation discussed IBD as my mother has UC or possibility of infection (tho she had no fever) took stool samples and admitted us because of pain and now heavy bleeding. Once she was rehydrated they did a colonoscopy and the doctor came out and told me she totally had severe Crohn's. She went thru needing to drink bright beginnings soy drink for 8 weeks then biologics every week then every other and eventually every 8 weeks for the rest of her life. She kept asking if she had any weight loss or pain or diarrhea or any symptoms prior to our night before the given the severity of the inflammation to which I replied over and over NO. What she did have was a recently diagnosed milk allergy and frequent nausea/vomiting when eating pizza or lasagna or things high in milk/cheese. I know you know what that night was like, hearing the diagnosis, researching and soaking up all info possible, not sleeping...the wondering what did I do or didnt I do to cause or prevent, what hasn't she been telling me...how am I going to tell her, help her, choose the right path for her, on and on until the next day when the biopsies came back....none of which indicated any Crohn's!?! Thrilled...yet confused and fearful. They thought maybe ischemic colitis based on biopsies then ruled that out, no UC, back to infection but six cultures each done three days apart have all been neg for c-dif,campylobacter, shigella all of them. I am fearful they are A. missing something and B. it really is Crohn's but we just don't know it yet. My question is how many of you were misdiagnosed initially or have had a similar experience seeking a diagnosis? We were discharged last week after 13 days in the hospital...she was really sick. Has anyone had experience with eosinofil colitis? Thanks for your help and support .... I'm so frazzled and afraid for her. I know Crohn's is treatable but it is terrible and scary and overwhelming 14 days in or out. Thanks again for any insight you can offer.
Have had a very scary two weeks in the hospital with my 16 yo daughter. I initially thought she had picked up a bug and had terrible stomach pain, nausea and diarrhea in the middle of the night. Suddenly she began bleeding and I took her straight to the ER. They did a CT scan and noticed lots of inflammation discussed IBD as my mother has UC or possibility of infection (tho she had no fever) took stool samples and admitted us because of pain and now heavy bleeding. Once she was rehydrated they did a colonoscopy and the doctor came out and told me she totally had severe Crohn's. She went thru needing to drink bright beginnings soy drink for 8 weeks then biologics every week then every other and eventually every 8 weeks for the rest of her life. She kept asking if she had any weight loss or pain or diarrhea or any symptoms prior to our night before the given the severity of the inflammation to which I replied over and over NO. What she did have was a recently diagnosed milk allergy and frequent nausea/vomiting when eating pizza or lasagna or things high in milk/cheese. I know you know what that night was like, hearing the diagnosis, researching and soaking up all info possible, not sleeping...the wondering what did I do or didnt I do to cause or prevent, what hasn't she been telling me...how am I going to tell her, help her, choose the right path for her, on and on until the next day when the biopsies came back....none of which indicated any Crohn's!?! Thrilled...yet confused and fearful. They thought maybe ischemic colitis based on biopsies then ruled that out, no UC, back to infection but six cultures each done three days apart have all been neg for c-dif,campylobacter, shigella all of them. I am fearful they are A. missing something and B. it really is Crohn's but we just don't know it yet. My question is how many of you were misdiagnosed initially or have had a similar experience seeking a diagnosis? We were discharged last week after 13 days in the hospital...she was really sick. Has anyone had experience with eosinofil colitis? Thanks for your help and support .... I'm so frazzled and afraid for her. I know Crohn's is treatable but it is terrible and scary and overwhelming 14 days in or out. Thanks again for any insight you can offer.
We were back and forth, testing with our ped for a couple of months before diagnosis as well. However, once we went to our children's hospital, they were able to tentatively diagnose my son within hours, based on labwork, symptoms and ultrasound; a colonoscopy, a few days later, confirmed the diagnosis. As I'm sure you've realized, you are not alone in finding that a firm diagnosis can, sometimes, take time. 
