Urgent Question

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Pebbledash
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Post by Pebbledash »

Thank you all. I'm in a better place. I have gone back to 3 budesonides per day and yes, I had a very big cup full of cholestyramine. I have the option of going on prednisone but I want to wait--if my hearing loss is auto-immune related then I will need to go on prednisone anyway. I don't want to wear out the efficacy of a valuable med.

I've gone down from 15 movements to about 5 yesterday.

I made a mistake. I had been dairy free for months but decided to buy some cheese since I have been going through such a hard time, a reward if you like.

It appears to have been at least one of the flare-up triggers, along with inordinate stress.

Trying to work my way back to peace.

Love to you all
P
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carolm
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Post by carolm »

Hi Paul,
I’m sorry you having to deal with all this.
I’ve been in remission for roughly 6 years and stress will knock me off track faster than anything. I meditate, try to exercise, have a good support group yet stress can still wreak havoc on my gut and now will cause a pinched nerve in my back.

It sucks and adding the stress of navigating the COVID world has piled more on. One thing that has always made a positive impact on my health is acupuncture. I feel balanced, calmer, and anytime I’ve gone in with a headache or a muscle spasm those things are resolved during the session. I told my acupuncturist that I need a ‘partner’ in my journey to better overall health and she has been very much been a partner. She is also a practitioner of Chinese medicine. I don’t know if you’ve tried acupuncture but it has helped me in many ways, including helping my gut motility. It definitely lifts my mood.

I wish you all the best,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Lisa_D
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Post by Lisa_D »

Hi Paul,
I'm rarely on this board any more because I'm doing so well, but two years I was in your spot -- unable to get out of the house and struggling intensely!


I worked closely with my GI and decided to go the biologic route (Humira) which I know is controversial, but today I feel fantastic. My diet is very closely monitored. I'm also constantly monitoring the dose of Humira and trying to stretch the drug more and more. My doc even suggested that one day I might not need it, although that might just be a hope.

I'm based in Boston and was fortunate to find a good doc.

Feel free to PM me or respond here if you want more info. Wishing you well!

-Lisa
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