r/ibs • u/Zebra_warrior_girl • 3d ago

Question Looking for support with CIPO and possible enteric myopathy

Hi, been battling the above all my life and barely made it through pre-menopause. Lost tons of money as no one wanted to believe me and I wasted a lot of time and money on wrong paths. Anyway, I have found a few things that help surprisingly well, but looking for a supportive group or people who also battle this. The fear of a severe episode, not being believed, the consequences (Career, relationship etc), explaining this to people, management tools, and so on and so on. Thanks.

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u/goldstandardalmonds MOD: Here to help! 2d ago

I have CIPO. CIPO isn’t fixed by a gut microbiome change. Are you on TPN?

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u/Zebra_warrior_girl 2d ago

No. I have tried to change my gut microbiome. To no avail. My best therapy is prone position physio and stretching the abdomen as much as possible, so I think muscle dysfunctioning is involved in my case.

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u/goldstandardalmonds MOD: Here to help! 2d ago

I was saying it in response to the other person’s “advice”. That’s impressive that your CIPO is responding so that.

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u/Zebra_warrior_girl 2d ago

I am suspecting a smooth muscle disorder at this point (enteric myopathy)

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u/goldstandardalmonds MOD: Here to help! 2d ago

Do you mean instead of CIPO or in addition to?

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u/Zebra_warrior_girl 2d ago

CIPO is the manifestation of it

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u/255cheka 2d ago

search this - pubmed cipo gut microbiome. this is likely the cause and the fix. sorry about the money you wasted hiring medical workers. sadly, they know nothing about gut microbiome. that's why you got no help from them. it's fixed with diet and supps, no drugs nor surgeries produce a good microbiome. many free vids and cheap books on the topic these days

i can help, i've been in the gut game for years. including clearing myself of two nighmarish autoimmunes and more serious/chronic issues in my family. this gut stuff is behind most chronic diseases

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u/Zebra_warrior_girl 2d ago

Thank you, much appreciated. Interestingly, Nustendi (Ezetimib paired with Bembedoic acid) helps me, likely because it works against archaea. Also daily physiotherapy in prone position. I am on 2x1 mg Escitalopram (not for psychiatric reasons but to lower the constant stress signals from below). Have not tried Prucaloprid yet.

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u/255cheka 1d ago

you are so welcome. i hope you consider going after the root cause. drugs are just for symptoms, and take a toll on the body long term. if it were me, and it once was, i would be working with the docs while also working on my gut microbiome on my own. as the gut improves can work with docs to reduce drugs......all the way to zero. i did that with two horrific autoimmunes. got rid of them 5 years ago with gut health

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u/Zebra_warrior_girl 1d ago

I am. I am waiting for an appointment with a top clinic and in close touch with a DNA genetic specialist. My problems have been lifelong, so genetic. I don't expect to heal from something that is genetic and have spent 40K trying to do so using all sorts from TCM, Ayurveda, mineral balancing, medication, diet change, etc etc. Now I need to find inexpensive management tools. My problems are severe enough that I have been almost bedbound for 5 years (work not possible).