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Could this be Crohn’s?
I have been struggling with my gut for around 3 years now. I have been diagnosed with endometriosis and IBS-C. My endo has been treated but my stomach problems persist. My doctor says I need to eat gluten free since they found small intestine inflammation and blunted villi during an endoscopy. I went gluten free and dairy free (also did blood test that found i am lactose intolerant) for a year. My symptoms did not improve. All it caused was more stress and symptoms did not improve with effort. I went back to my GI this week and she basically said to go back gluten free, back on Linzess (which I have been on over 3 times at all 3 doses with no improvement). I have also been on Trulance and Amitizia with zero improvement, they didn’t even cause a bowel movement. I have to take zophran some days as the nausea gets too bad from eating. I know this causes constipation so it makes everything even worse but some days I cant get by without it. My other symptoms have been bloating, foul smelling gas, pain and cramping, and fatigue and joint pain. I am worried my doctors are missing something and that it might be IBD and not just IBS. I have also just started seeing a motility specialist who ordered a pelvic floor exam and a calproctin stool test. I am hoping for answers. Noone seems to think it is related to inflammation, an autoimmune disease, or long covid even though one or all of those things are what, no pun intended, my gut is telling me. Any personal stories or advice would be greatly appreciated. I am trying to advocate for myself but my symptoms have been getting ignored.
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I also had a CT scan that showed an umbilical hernia and pelvic free fluid. I got referred to a general surgeon by my PCP. She also prescribed amtriptiline which I reluctantly agreed to, not realizing it was an antidepressant. It made me feel like all my symptoms are in my head.
@jsunflower welcome to Connect!
I'm sorry you don't feel like you are being heard; that's frustrating. Here is an article on how Crohn's Disease is diagnosed (and symptoms are on the previous page to it):
https://www.mayoclinic.org/diseases-conditions/crohns-disease/diagnosis-treatment/drc-20353309
Bloody diarrhea is a common Crohn's disease symptom, and that is how mine presented originally, although apparently constipation can also occur.
A colonoscopy is usually part of diagnosis, have you already had one?
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1 ReactionI'm stunned that you have not had a Fecal Calprotectin test prior to now, with all your symptoms! Also, it sounds like you need a colonoscopy with biopsy to confirm whether or not you have microscopic colitis and if so, whether it's Crohn's disease or one of the other variations. Just my opinion, but it sounds to me like your GI has dropped the ball.
Tagging a few Mayo Clinic Connect members who've talked about Crohn's disease (possible or definite) — in themselves or a loved one — who might have some feedback for you, @jsunflower, about your wondering about whether you might possibly have Crohn's. They can tell you whether they are familiar with your symptoms of stomach problems with nausea, bloating, foul-smelling gas, pain, cramping, fatigue and joint pain. Please meet, if you've not already, @jerr51498 @catherine1290 @jer22 @jvitanza1 @camprunamuck @harrison221.