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Well, it's been a journey (which, I'm learning, is part of all this). Long story made as short as possible, I experienced random bouts of severe bleeding with stools for three years. Many tests and colonoscopies showed nothing and they assumed bleeding was due to significant ibuprofen use (college athlete, many surgeries). Finally, in March of 2023, bleeding was so severe and a colonoscopy was finally conducted while bleeding was active, came back with a diagnosis of 'either Crohns or UC' and stool test showed calprotectin of 1000. No history of IBD in family. Very healthy, other than severe hashimotos which is controlled with meds. No history of gut issues. They gave me Mesalamine suppositories to help with the bleeding, which they seemed to? Only symptoms back then were the bleeding and what I call 'put-put' gas, as well as some mucus in stool. (Forgot to mention, I'm a 36yo female). 

Since then, I've had many small flares, although none as bad as last March... that is until New Years when I was bedridden with severe stomach cramping and nausea. That remained for about 2 weeks and I lost 6lbs due to lack of appetite (I don't have much to lose in the first place at 5'11, 140lbs). GI ran labs and my calprotectin was normal (24)... so my GI said this isn't related to my IBD. That was incredibly disheartening, and seems like it isn't possible? I've had the same cramps a couple other times in late November and mid December, so it definitely isn't a stomach bug. They tested for all parasites, etc. so it seems most likely connected to IBD? Anyways... Stomach cramps are back with a vengeance today, along with no appetite. None of it seems food related as the various stomach cramp issues have all been different times and places with very different eating patterns. I'm already off of dairy anyways. 

I'm perplexed and anxious about all of this. I'm a mom and a high school teacher and it is starting to impact my ability to work (when cramping and nausea are bad). Not a lot of severe diarrhea anytime during my IBD, which I understand is unusual. However, hashimotos comes with severe constipation so that could explain the lack of diarrhea? Colonoscopies showed various things, none of which were severe, but seemed to indicate either UC/Crohns. But, with added symptoms and normal calprotectin (1000 level was in March 2023, then down to 86 in July, now 24) I'm at a loss... can you be in a flare and not have elevated calprotectin? Or does this now mean I don't have Crohns/UC? 

Mostly this just feels fatiguing. I read what I can and feel incredibly blessed not to have as severe symptoms as many with IBD, which then causes me to feel guilty since I do feel so frustrated. It's just a lot, lately. 

Anyways. Sorry for rambling. 

Dani 

Reply posted for danihawes.

Dear danihawes

I'm so sorry to hear about your experience and I thank you for being open on this platform to share. If you explore this site, you'll see you are not alone, but everyone's journey an d personal impact is certainly very unique in its own way.

There are many components to the information you shared. The first thing that I want to offer is, for you to call our IBD Help Center (888) 694 8872 extension 8. I think it would really help to speak to someone to walk you through some of the resources, questions that you can discuss with your doctor.

You raise an interesting point about fecal calprotectin. When those levels are elevated, it is an important result (typically called biomarker) that may indicate that there is inflammation occurring. But gastroenterologists may use many other types of tests to help determine this or to rule out any other type of issue such as an infection. One type of test you mentioned is endoscopy (including colonoscopy). You'll also have blood tests, and potentially other imaging tests. Together with your symptoms, these tests will help paint a clearer understanding of what may be the issue. It does sound like your team has been working with you to determine the possibility of Crohn's or UC. 

You also mentioned how challenging this is in your career, and this is a shared experience with many people with IBD. Advocating for your needs is so important and we have a few resources you may want to review to and get tips on what is important to keep in mind:

Employee and Employer Resources | Crohn's & Colitis Foundation

Other resources may be helpful that touch on the diagnostic process:
Diagnosing and Monitoring IBD by Crohn's & Colitis Foundation - Issuu
Managing Flares and IBD Symptoms by Crohn's & Colitis Foundation - Issuu
Newly Diagnosed | Crohn's & Colitis Foundation


Thank you again for openly sharing. We have many other resources and the Foundation can connect you to what you may need in your journey. 

Best wishes!