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Trying to Find a Diagnosis

Trying to find a diagnosis. One Sunday in August of 2022 I felt constipated and then became so nauseous that I started vomiting. I started to sweat profusely. After 8 hour of this my husband came home to find me passed out on the couch. I was taken to the hospital where I was finally diagnosed with ischemic colitis. I was in the hospital for 5 days. In that time they tried to do a colonoscopy but swelling in GI was too bad. At the time of my admitting to hospital my calprotectin value was 2477. In October 2022 it was checked again and at 142. Checked again in November 2022 and it was 252. I had a colonoscopy in December 2022 with multiple biopsies taken. Colonoscopy showed a large scar, and two areas of inflammation in colon. Biopsies came back showing nothing. My GI dismissed my case saying I was still healing from the ischemic colitis. Fast forward to May 2023. I have lost over 60 lbs as I still struggle with eating as the pain is so bad. I am still on a bowel rest diet. I just had another calprotectin test and my value was 247. Also ever since the ischemic colitis I swing between constipation and diarrhea. I am now on Linzes and four days in no help. I am scheduled for another colonoscopy next week. Additionally I am having gastoparesis test in July. I was told by my first GI (I have a new one now) that I do not have IBD because there were no markers in my biopsies. I have numerous other autoimmune diseases that none show the traditional markers. Has anyone else had clean biopsies, normal colonoscopy but elevated calprotectin? It has been 9 months and my system is not back to normal nor can I eat. I have struggled to find a protein replacement as I am allergic to milk protein, nuts and can have issues with soy. Any suggestions on GI friendly proteins?

    1. I to have many other issues including polycyctic liver disease and early serosis due to surgeries I am in pain daily and told it is not from my liver. I to have been scheduled for a pelvic floor disease test but not until October I have been unable to work and to live a normal life is unheard of considering I don't even know what size I will be or if I will be able to get out of bed. I can't enjoy a meal for fear of the pain. Just looking for some relief.

      1. Oh , I do hope that you can get some relief. It is just such a challenging and aggravating disease, and being unable to enjoy a meal or work or even know if you'll be able to get out of bed, I can hear your frustration. Please know that this community understands and is here for you! -- Warmly, Christine (Team Member)

      2. Hi . I note from this article on polycystic liver disease that, while most cases are asymptomatic, "However, in a small percentage of patients, hepatomegaly can lead to abdominal pain, distension, and compression of adjacent organs, potentially affecting the quality of life:",epithelial%20cells%20in%20the%20liver. I want to note that we are not medical professionals and, for your safety, cannot offer medical advice over the internet, so I can't say if this is your issue and it would be completely different from IBD. Hopefully your doctors can narrow down a diagnosis and you can get some relief. Have you seen a liver specialist (hepatologist)? Wishing you the best. Richard (Team Member)

    2. Hey, so I'm also a nutritionist nightmare, I have diagnosed chrones had a bowel resection two years ago and oh yeah a few years before that found out I have Alpha Gal, red meat allergy. No dairy either. Lots of fish and bland eggs!

      1. that does sound like a tough diet to manage. You mention being a nutritionist nightmare, are you working with a nutritionist to help find suitable food for what your body can manage? -- Warmly, Christine (Team Member)

    3. To CommunityMember47348d...has anyone checked out your small bowel with a camera endoscopy? I ask because that's where I have Crohn's Disease, in the jejunum . My colonoscopies look great and calprotectin tests are always fine. But, I've had a small bowel resection from strictures caused by inflammation in the small bowel wall. I can only relate my experience. I'm certainly no doctor, but I do understand your frustration and pain and I hope you find answers soon.

      1. I have exactly the same thing. Small bowel strictures are my biggest reoccurring issues with Crohn's disease. I just had my 2nd resection and 1st time illiostomy. Hopefully I can have it reversed once I fully recover.

      2. Thank you. Your post makes me feel better about taking a biologic. I'm now on Skyrizi. But, I quit Humira. Long story. I'll stick with it. I don't want another resection. I wish you a swift and complete recovery.

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