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Does this sound like Crohn's?

  • By Devdubbs

    Hi everyone, I have been struggling since September to get a diagnosis. So far I have been through multiple blood tests and imaging studies to determine what is going on. I started this journey as a healthy, active 28 year old. I worked out 5-6 days a week, ate clean and cut down on my drinking. I always suffered from digestion issues but it has recently progressed to chronic (in my opinion).

    I went to my PCP complaining of abdominal pain, diarrhea followed by bouts of constipation, pain when eating (didn’t matter what it was, it hurt!), fatigue, etc. I was told it was likely an ulcer and was put on Omeprazole for 3-4 weeks and the BRAT diet. Neither helped. I was instructed to do a cleanse with Miralax for 3 days. This was the WORST pain I had felt in weeks. The BRAT diet consisted of white rice, white bread, crackers, peanut butter, yogurt, etc. All foods I didn’t normally eat and it made things worse. I avoided acidic foods and fatty foods.

    I was sent for an ultrasound which came back normal. I was taken off the OMP but kept the bland diet. I was referred to a GI who ordered a HIDA scan to test my gallbladder. That came back borderline, but was still considered normal. The GI ordered a CT scan but insurance denied it. The GI didn’t do the peer to peer to get it approved. GI prescribed bentyl for abdominal spasms which did nothing.

    I went to a gastro surgeon for a second opinion. They ordered a CT scan which found abnormal thickening of my small bowel loop into my duodenum. I went for an endoscopy and colonoscopy which came back normal. The endoscopy went as far as could go, but not far enough to show where my damage was. I’ve ruled out Lupus and celiac as well. I went to see an allergist to rule out thyroid and food allergies.

    I went to a SECOND GI (and my fourth doctor so far) for another second opinion. I have gone on the autoimmune protocol diet to desperately gain some weight. I’ve lost over 15 lbs. so far and don’t have the energy to do much of anything. I have night sweats, fatigue, joint pain, blurred vision, diarrhea followed by bouts of constipation, abdominal pain, severe bloating, cramping. The new GI just did a gastric emptying study and I am waiting on results. Stool test to look for calprotein as well.

    All blood work and tests, excluding CT, have come back normal, but my aunt has crohn’s, my mother diverticulitis, and both paternal grandparents died of colon cancer (my colon is clear). I am very concern of crohn’s but four months later still do not have a diagnosis. All blood work was normal except low red blood cells and hemoglobin. I have had protein and blood in my urine as well but kidneys are fine. I will be doing a pill capsule endoscopy next to find some answers, but I am thinking it is crohn’s.

    Any advice or insight? I’ve had very terrible patient care so far and my aunt recommended this site for help and guidance in the meantime 🙂

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  • By Natalie Hayden Moderator

    So sorry to hear you are going through this, not having a diagnosis and knowing something is not right is very frustrating, disheartening and exhausting. I would recommend they do an MRE on you. I’ve been told my Crohn’s was in remission and then a week later had a bowel obstruction. The doctor’s response “oh the scope can’t go that far.”

    Magnetic Resonance Enterography (MRE) is a special type of resonance imaging (MRI), performed using contrast material to produce detailed images of the small intestine and bowel. I had an MRE when my GI was trying to determine if I needed a bowel resection surgery–turns out I did. This test will show what a CT scan and colonoscopy won’t be able to.

    I too had doctors wondering if it was my gallbladder, appendix, etc. Continue to be your own best advocate, you know your body better than anyone else. Rather than elimination diets, you may want to start with a low residue diet (cooked veggies, meat, no nuts/popcorn, alcohol, no wheat breads/pastas)…from there, slowly start integrating foods and see what your triggers are. Keep a food journal, as it can be hard to remember. Log how many times you are using the bathroom. Bring your “stats” with you to your next doctor appointment. A low hemoglobin/anemia can oftentimes be related to IBD as we “constantly bleed” within…even if it doesn’t show up in the toilet.

    Hope you find answers soon! You are not alone in your struggle-Natalie, InflammatoryBowelDisease.net

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