Dealing with Crohn's Flares and Frustration

Hi, I’m Meg! I’m 20 year old with Crohn’s disease (and a bunch of other conditions.) I’m currently on Stelara after trying Humira for about a year. It’s been 3 months and I still feel really sick and have digestive issues but i recently had a ct and everything came back normal. Frustrating as usual!!! It may just be my ibs but my main symptom of a crohn’s flare are mouth ulcers and those have come back horribly. It’s frustrating that my flares aren’t ever big or “bad” enough to appear on tests. Anyone else deal with this as well? Also- nice to meet you!!

Your answer

ChronicWitch

2y ago

Hello! I’m 25 and I’ve had Crohns for a about 4 years now. As of late I think something is seriously up with my Crohns as well, I don’t eat as I should, pain and nausea are high, appetite is nonexistent to minor, and passing blood. I had a colonoscopy beginning of the month and it’s “normal”.

spoonie93

2y ago

Hi, nice to meet you! I've had this issue before with Crohn's. I feel terrible but my labs and imaging come back normal and doctors tell me that everything is fine or that it's anxiety related or it's in my head. It's so incredibly frustrating and it makes me doubt myself. I'm sorry you've been dealing with such a tough time while switching meds. I hope you start feeling better soon!

HotWheelz

2y ago

Nice to meet you! Healthy people just don’t understand why normal test results can completely destroy and invalidate us rather than be reassuring. We don’t want bad results but we do want answers! Hopefully you find some soon

kowysteria

2y ago

I haven’t had to deal with this with crohns but right now i’m having some bad problems with my joints. i’ve gotten x-rays, bloodwork, ect. but it all came back normal. something is wrong I just know it. It’s nice to meet you too!

HotWheelz

2y ago

It’s so frustrating when everything comes back “normal” on scans, especially when you know your body! I’m on TPN and my main crohns flare symptom is also mouth ulcers. I hardly absorb any nutrients and yet my scans look “fine”. Tell me how that works!???

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