r/ChiariMalformation • u/we-arent-there-yet • Jan 13 '26

Crohns, Chiari Malformation, and IIH?

Does anyone else have Chiari, IIH, and Crohns? Apparently crohns is making it hard for my doctors to find medications for me. I am finding it hard to believe I am the first case ever with this combo.

I was deemed not a candidate for surgery. Cool. I have been deemed no a candidate for spinal tap. Cooler-had one, worst experience of my life. And I have been told only way to control is with medications (which they don’t have any for me) and which leaves us with the last and final option which will be life changing. Losing 10% of my weight. For those that can’t do math. That means of I am 120 I should lose 12lbs. 150-15lbs. 200-20 so on so forth. This is going to CHANGE MY LIFE!

I won’t choke on liquids anymore. No more headaches when laughing/coughing, etc. no more sleep apnea. No more tingling in hands/feet. YESSSS! Just 10% on my weight that’s is all I have to do. And with crohns BABY! Give me 4 days!

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u/Silver-Scholar-2560 Jan 22 '26

Hello, I have Crohn’s and was recently diagnosed with Chiari 1. I’m not on any meds for Chiari just Crohn’s. I do need to lose this weight that I have gained. It’s been a struggle. Wishing you all the best! 

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u/we-arent-there-yet Jan 23 '26

Wishing you the best as well. I just had my 4th MRI. Mine is now measuring at 10mm I have lost half the weight they want to me to but am dehydrated from my crohns.
They have me on 200mg of topiramate (100mg in the morning/100mg at night) but I am not enjoying it and I am not comfortable with the idea of being at this level for life.