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Crohn’s and POTS anyone?

Just wondering if anyone has experience of Crohn’s and POTS. I got very sick with Crohn’s out of the blue in 2017. It has taken a long time to find a drug that worked but finally it seems Stelara and careful ibd aid ish diet and some supplements seem to have finally at least quelled the inflammation to some kind of reasonable level (FCP around 130).
So I was surprised to still be feeling pretty rubbish- occasionally racing heart rate, unable to stand for long without feeling faint especially in hot weather, generally fatigued and unwell in a vague way, shaky, struggling to regulate temperature so Raynauds if even slightly cold and weak and feeling faint on a warm day.
Anyway the GI was on holiday at last appointment so I saw the underling who said “why do you think this is anything to do with Crohn’s, sounds like POTS to me” and ordered tons of blood tests to check thyroid, iron etc
Since then I got covid closely followed by flu and the POTS stuff has escalated massively to the point I can only walk a very short distance otherwise need a mobility scooter. Which gets some odd looks as I’m in my 40s.
I have been referred to see a POTS specialist at the end of May (thanks useless government for running every public sector service into the ground) in the meantime I am desperate to get some sort of life back.
Any experiences and especially recovery tips most welcome. From what I’ve read, there is a gastro-POTS link but not well understood
Happy new year to you all anyway and hope 2023 brings health improvements for us all and loved ones xx
 
Hello. Again, not suffering from this personally, but there is an influencer on TikTok, www.tiktok.com/@paulasojoro, who has CD + POTS. I find it difficult to keep up with the mass of social media, but if you're scrolling, and a vid pops, maybe it'll be one that might help.
 
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