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New to IBD - Feeling Overwhelmed

Sat, January 27, 2024 12:58 AM

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

danihawes
Joined Jan 26, 2024

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