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Worried wife, mother, RN needing advice.

Hello all! Thank you for reading. Quick summary.
Husband has suffered on and off most of his life with diarrhea. Family says it "runs in the genes". I figured they must all have dairy intolerances or something.
Jan of this year he gets chronic diarrhea. Covid hits and we are home working on projects. He is losing weight and says it's from physical activity, but he's tried many times to lose just 10lbs. All of a sudden he's down 40lbs and looking sick. I force him to get a colonoscopy. They biopsy his whole GI, take 1 polyp. All negative besides some inflammation in stomach.
Then 6-8 weeks ago he starts getting ti going in his hands, progressing to wrists. Soreness in his ankles. Now, I'm an RN and I know what autoimmune looks like. I fight with his primary for a Rheumatologist appt. They say it'll be 2-3 months before we get in. All of a sudden my husband is struggling with urination incontinence and urgency. We visit the ER to try and get answers. His blood work isn't horrible. Protein is low, Hbg and Hct on the very low end of normal. These are both significantly lower than in March when he began to visit the Dr.
He just had an abdominal CT yesterday which can back as having a small bowel intussusception, which "will most likely improve on its own". He had an EMG study on his nerves and muscles and it showed he had demyelinating sensorimotor neuropathy causing carpal tunnel syndrome.
I have researched my butt off. Argued with Dr's, and fought for every test he's been given. I'm currently waiting to hear back from the GI Dr, but I wanted to know your guys' experience.
I've read that crohn's patients, if left untreated, can trigger other autoimmune conditions. Has anyone experienced this?
I read on the forums of many cases of negative colonoscopies and biopsies. Sounds like we need to have the camera pill.

  1. That's supposed to say tingling, numbness, and zaps in his hands. Also, he is exhausted from any kind of work.
    Sorry, couldn't see where I could edit post.😁

    1. Hello, just wanted to see if you got any answers in relation to your husband? Some of his symptoms sound similar to mine. Thank you.

  2. @2Huffmans, I can tell from reading this just how much of a support you are to your husband, which I think is amazing! So I just wanted to lead with that!

    There are a lot of related conditions and extra-intestinal manifestations. RA is quite common in people with IBD. I actually have Ulcerative Colitis, not Crohn's. I struggle with fatigue and joint pain frequently, even without being in a flare, although it is common for the two to coincide. Also have related skin issues such as Psoraisis.

    Fecal calprotectin and CRP have never been great indicators for my disease activity. A flexi-sig and biopsies would always tell another story though!

    It's not that uncommon for diagnosis to take a long time, even now, which really saddens me! At the end of the day, it's the people living with it (and in your case, alongside it) that know how much of an impact a health issue is having. I would definitely keep pushing for tests and answers.

    Best of luck to you both!

    - Sahara (team member)

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