Hello everyone!
I am currently a freshman in college. I have been symptomatic since about sixth grade. After years and years and a plethora of doctors I was finally diagnosed with Crohn's the summer before my senior year in high school by pill cam at Mayo Clinic. I took azathioprine for over a year and my doctor was convinced my Crohn's was in remission -- my inflammation appeared to be gone and my constant battle with anemia was over. The doctors figured that because I was so sick for like eight years that the pain was just in my head because I was so used to being sick (I don't remember a single day without symptoms or pain). They were also convinced that I had IBS and that was still causing my diarrhea. (Keep in mind I still kept getting mouth ulcers, spots on my skin, and having diarrhea and many bowel movements). I took the ultimate IBS antibiotic and it made me more sick than I've ever been. I took pentasa. It also did nothing. Anyway, my doctor did another pill cam and said that a year and a half after my first one, everything looked EXACTLY the same. Ulcers in the same exact spots! Mucus and other nasty spots everywhere in my terminal ileum. They gave up on me and are telling me to go back to Mayo or somewhere else that advanced because they have no clue why my inflammation is completely gone and how I'm in "remission" while nothing actually in my gut has improved in the slightest. The issue is that Mayo is always busy and I'm a college student. I can't miss classes a week! I know my health is a top priority, but I'm also dealing with POTS (with a possible diagnosis of MCAD(S)) and also I have a recently diagnosed irregular heartbeat and have to get that looked at asap. My doctor thinks I might have some other gut disease on top of my crohn's but didn't really suggest much and basically said just to go to Mayo. Anyway, has anyone had this sort of thing happen? I've looked it up, but all the internet knows is Crohn's and UC and nothing lesser known. I basically feel like it's up to me to diagnose myself because that's what I had to do with my Crohn's and heart and that's how my doctors finally figured that all out! Please help! I'm loosing my mind!!!
I am currently a freshman in college. I have been symptomatic since about sixth grade. After years and years and a plethora of doctors I was finally diagnosed with Crohn's the summer before my senior year in high school by pill cam at Mayo Clinic. I took azathioprine for over a year and my doctor was convinced my Crohn's was in remission -- my inflammation appeared to be gone and my constant battle with anemia was over. The doctors figured that because I was so sick for like eight years that the pain was just in my head because I was so used to being sick (I don't remember a single day without symptoms or pain). They were also convinced that I had IBS and that was still causing my diarrhea. (Keep in mind I still kept getting mouth ulcers, spots on my skin, and having diarrhea and many bowel movements). I took the ultimate IBS antibiotic and it made me more sick than I've ever been. I took pentasa. It also did nothing. Anyway, my doctor did another pill cam and said that a year and a half after my first one, everything looked EXACTLY the same. Ulcers in the same exact spots! Mucus and other nasty spots everywhere in my terminal ileum. They gave up on me and are telling me to go back to Mayo or somewhere else that advanced because they have no clue why my inflammation is completely gone and how I'm in "remission" while nothing actually in my gut has improved in the slightest. The issue is that Mayo is always busy and I'm a college student. I can't miss classes a week! I know my health is a top priority, but I'm also dealing with POTS (with a possible diagnosis of MCAD(S)) and also I have a recently diagnosed irregular heartbeat and have to get that looked at asap. My doctor thinks I might have some other gut disease on top of my crohn's but didn't really suggest much and basically said just to go to Mayo. Anyway, has anyone had this sort of thing happen? I've looked it up, but all the internet knows is Crohn's and UC and nothing lesser known. I basically feel like it's up to me to diagnose myself because that's what I had to do with my Crohn's and heart and that's how my doctors finally figured that all out! Please help! I'm loosing my mind!!!