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Medical related frustrations

I have read in my report from my colonoscopy the words Crohn's disease. I have a few of the symptoms and signs of Inflammatory Bowel Disease including ulcers in the terminal ileum but because I don't have more symptoms my gastroenterologist doesn't want to give me a solid diagnosis. However when I just looked at the results of my metabolic panel I realized that I was just one point from being low on my calcium and that my alkaline phosphatase is elevated at 159 which is indicative of a problem with either my liver, bones, or gastrointestinal tract. I have been in pain since the mid part of August and that is located in my lower right abdomen, upper abdomen and sides, and my back. But a CT scan with contrast hasn't found anything like a bowel blockage or anything that would point to a physical cause for the pain. My only guess is that the pain is radiating to other parts of the body. My entire digestive system is a mess because I have multiple things going on. But having IBD has made more of an impact on my life and I know that this is a lifelong condition. I have basically been told to take Tylenol, a fiber supplement, and calcium citrate with D3 and to peel and thoroughly cook produce. No more raw produce with skin. Nothing with seeds or nuts. No whole grain products. I have to modify my diet. Exercise of course. I cannot start any form of treatment right now. I believe that I have IBD. I have done my research. I understand that this isn't a cookie cutter disease where every affected individual experiences the same things. For example I alternate between diarrhea and constipation. I get severe abdominal distension from gas. I have gastrointestinal tract spasms and pain and the pain hardly lets up. I get the sudden urges to go to the bathroom. I can go up to 4-7 times a day. Or I can go 2-3 days without a bowel movement and everything is absolutely still. However a few days of constipation ends with diarrhea. The only indication that I need to get to the bathroom is when everything is starting to gurgle and I can just about tell what part of the gastrointestinal tract its coming from. Sometimes I don't eat because I know that when I do I'm going to end up in the bathroom. If I have to be somewhere I try to go on a empty stomach to avoid an embarrassing situation. Sometimes I don't eat because I don't have any appetite. Sometimes I don't eat when I have been having to spend a part of the day in the bathroom because I don't want to add more to it. And if I haven't been having any bowel movements in a few days I try to eat what I can to try to get stuff moving along but that's not always successful. I'm just frustrated with everything.

  1. totally hear you're frustration! The dietary changes you have just described are that of a low residue diet, which is common for people with IBD to be on during flares, to slow things down, or for people with strictures. If you have been told to follow that plan because of your intestinal symptoms, then I'd have thought they would have at least tried you with an actual treatment. A low residue diet is never good as a long term solution!
    Sorry things are rubbish for you right now!
    ~ Sahara (Team member)

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