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Lesley
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What do you know? Surprise!

Post by Lesley »

Doc came back from vacation and has not even seen fit to reply to my question re: PPS and MC. I just shot him another email. I will let you know the result.

Nexium - in the donut hole and can't afford it. I am taking protonix, but it's not the same. It;s ridiculous!

The gerd, is bad, especially at night after I take my meds. Comes with horrible nausea.

I have been doing the very restricted food diet for several weeks now. It hasn't changed anything really. Same cycle. 5-7 days of C, stool softeners throughout, then 24-36 hours of cramps and D.
The exhaustion is with me all the time. Thanks to Licorice I walk some, and I have been trying to exercise/swim daily, but can't always manage it. My back has been horrible.

:sad: OK, that's where I am right now. 2 years, and the only good thing I can say (and it is big)is that I don't have D 24/7. Otherwise I am stuck.
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tex
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Post by tex »

Lesley,

I can't remember — have you ever tried a low dose of amitriptyline (say 10 mg, for example), as a motility regulator? The GERD/nausea problem is probably at least partially due to slow motility, which may promote gastroparesis (causing nausea and reflux). You're probably aware that Carol successfully uses Elavil to regulate motility.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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JLH
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Post by JLH »

Sorry, Lesley. I sure hope things improve for you soon. Yes, you are lucky not to have D.
DISCLAIMER: I am not a doctor and don't play one on TV.

LDN July 18, 2014

Joan
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Lesley
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Post by Lesley »

Tex,
I have been taking 100 mgs of Nortryptiline forever. Used to get migraines. Don't anymore. I quit effexor, and wanted to quit Nortryptiline also. Doc said I shouldn't because it is the only one operating as some sort of a pain manager. As it is the levels of pain are pretty high. I have been so knocked out by it I have barely been able to move. If I didn't have to take Licorice for a walk I would not leave my apartment.
My motility has always been a problem.

Thanks Joan.
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Fish2575
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Post by Fish2575 »

Lesley,

I would suggest switching to Zantac. PPIs did nothing for me. The antihistamine in Zantac works quite well. I try not to take it, but when I do it definitely helps.

Susie (Right there with you at 2 yrs and still suffering!)
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Joefnh
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Post by Joefnh »

Lesley I think Tex may be on the right track with suggesting motility as an issue.

I'm currently dealing with myasthenia gravis and I take a medication called Mestinon (pyridostigmine bromide). This med helps with the muscle functionality throughout the body and in my case helps with my abillity to walk and breath as these muscles are becoming weaker and somewhat paralyzed on 'bad days'

Mestinon is even sold in France at a low dose over the counter and commonly used to help with chronic C by increasing the muscle strength. I know initially it caused a bit of D until my body got used to taking it. Mestinon is an older medication developed in 1932 and is quite safe and available in generic form. If you want to, you may want to ask your GI doc for a trial prescription. There are few side effects or interactions with other medications and is used by GI docs in cases like yours.

Hopefully your 'Nurse Licorice' is looking after you properly

:-)

Take care
Joe
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Jody bee
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Post by Jody bee »

I'm so sorry to hear how horrid you're feeling Lesley :bigbighug:

Thank God for our dog children, we'd be lost without them.
Jody
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