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Waiting for diagnosis

Wed, March 27, 2024 5:09 PM

Hi,
I haven't been diagnosed yet but being tested for Crohns. I've had stomach issues for years, mainly bathroom urgency after eating. November 2023 I had a gallbladder attack, found out I had gallstones and had my gallbladder removed. My surgeon told me it was full of adhesions and I must have been having gallbladder problems for a long time. It was stuck to my liver and from him removing it caused bleeding in my liver and I had to have a drain placed for that. That all healed fine, and I was doing good for about 2 months, then in January started having severe pain in the same area. Went to ER and the did a CT scan that showed my small intestine walls were thickening and I needed to see a GI doctor. Met with GI, he said he suspected IBS but did a colonoscopy and upper endoscopy and both came back good. Did CRP and ESR, both were good also. He prescribed me Linzess, which only made things worse. Then I had a CT enterograpy which again showed significant abnormal results with bowel wall thickening and multiple enlarged mesenteric lymph nodes. Tested fecal calprotectin, came back at 1370. Now he suspects liver problems and is doing a capsule endoscopy. I feel like he doesn't believe the pain I'm in, and with the test results I've been getting I'm a little scared.

I'm sorry for such a long post, just wondering if anyone has any insight or suggestions for me or if anyone has been through something similar.

Bellbeck
Joined Mar 27, 2024

Wed, December 04, 2024 9:56 PM

Reply posted for Bellbeck.

The capsule endoscopy is a crucial test in this scenario because it allows for a detailed look at the entire small intestine, where Crohn’s disease often hides. If Crohn’s is found, treatment might include medications like biologics (e.g., infliximab or adalimumab) or immunosuppressants to control inflammation and prevent complications.

suika
Joined Nov 16, 2023

Tue, October 29, 2024 10:00 AM

Reply posted for Bellbeck.

Thank you for coming to this space to share your experience.

Many people with IBD have a long road before they are diagnosed, and if it is indeed IBD, you are always welcomed to the Crohn's & Colitis Foundation for support through your journey. But it sounds like there is more to undertand and your healthcare team is the process of assessing what might be your paricular issue. There are many types of gastrointestinal conditions outside of IBD.

Here is some information that you can hold on to, and if your diagnosis is IBD, the Foundaiton is here to help. People with IBD can thrive and although the journey is not easy at times, there is a community out there to offer support and education.

IBD Journey | Crohn's & Colitis Foundation

Best of luck!

administrator
Joined Oct 12, 2017

Sat, September 21, 2024 3:23 AM

Reply posted for Bellbeck.

It is important to share experiences and support each other, as navigating symptoms and medical tests can be difficult. It provides comfort and valuable insights while waiting for answers.

PaulASmith
Joined Sep 21, 2024

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