Diagnosed with Crohn's but having weird symptoms

Posted by jkellyjones @jkellyjones, Nov 30, 2017

7 years ago, I was diagnosed with Crohn’s disease. I was diagnosed based on symptoms, what the doctor saw in my colonoscopy, and inflammation markers on the Prometheus IBD inflammation marker test. My biopsies came back negative and we didn’t do any other tests. We tried a few medications but only prednisone seemed to work. I went into remission when I became pregnant and weaned off prednisone slowly. Pretty much my whole life I have had diarrhea and nausea easily, kidney stones, and recurrent mouth ulcers that are very bad. When I was diagnosed I also had joint and all over pain, painful bloating, lower right quadrant pain, vomiting, rashes, severe fatigue, hair and nail breakage, and ran a fever constantly. I still have all these symptoms intermittently. A couple years ago I became very ill again. The new GI doctor was unsure of my diagnosis because he did not see anything on my current colonoscopy or CT. He decided to try an IBS medication as well as some Crohn’s meds. Again only the prednisone worked. I eventually weaned off all the meds and am trying medical cannabis (cbd) and trying lifestyle changes. However, I really want to figure out what is wrong. When I get run down or stressed and everything gets worse. My skin even hurts some days. I have joint pain in large and small joints. I get swollen lymph nodes (I even have one in my elbow right now) and I get a lot of muscle and joint pain especially on my left side- leg, hip, shoulder, neck, arm, fingers. I get rashes on my face, hands, and body but not a butterfly type rash. I get sores in my mouth and throat so bad it's hard to talk and eat. I run low grade fevers easily and get diarrhea. The doctor ordered multiple urinalysis tests to see if any of my abdomen pain at the time was from kidney stones, but every time I just had high protein and nothing else. My WBC and CRP are normally high. They did ultrasounds to check my ovaries and uterus too. I feel anxious not knowing what is wrong with me. My question is - Could I have had that inflammation from another autoimmune disease and have been misdiagnosed? I keep finding similarities with my symptoms and lupus. Should I ask my doctor for some kind of testing for lupus or something else? Does anyone else have something that sounds similar?

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To mcosby01:
I have both Crohn's (I assume that is what you were trying to spell- It is a tricky one) and have had breast cancer so I know a little of what you are going through. Did the surgeon remove a large number of lymph nodes in her search for escaped cancer cells? If so, it might account for your swelling and movable pain. Did you undergo message and PT for lymph problems after your surgery? All this sounds like it is related to your removel of lymph nodes (which are unsung heros) and you should have been instructed how to help the ones that are left. Put a call into your surgeon's office and see if they can dirrect you to someone who can help.

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