1. < Digestive Health

Colonic Inertia

Posted by matchabell @matchabell, Sep 18, 2023

Would like to hear from those diagnosed with colonic Inertia. With and without surgery, What surgeries you had, and how are you now ?
Also dyssynergia overlapping ( outlet dysfunction ). How long without surgery, and what your doing for daily management ?
Scared of any surgeries, but also fearing symptoms progressing.
Appreciate those sharing their experiences.

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GISUE | @slangston | Jan 7 2:41pm

i have colonic inertia which increased dramatically over thr last 2 years. My GI doctor has dismissed me after a year of trying different meds. I did have another GI doctor, who didn't understand colonic inertia. I am dependent on Smooth Move Tea, Linzess, Magnesium capsules, Colace with Senna and sometimes add MOM. I can't tolerate Miralax because it makes the bloating worse. I did have a surgery consult and told total colectomy with ileostomy. His receptionist was extremely rude which was actually good because it made me read more about this condition. I am a retired RN. I don't feel confident about surgery in FL Tampa General, Mayo Clinic in Jacksonville and UF all rank in the 30's in the US. Mayo Clinic is # 1 so that is my plan for now. i have had Pelvic Floor Therapy for over 3 years with 3 different providers.
was far. i have fought off surgery for several years, hoping some new treatments would become available. I am stressed out over this potential surgery..... !

REPLY
linma | @linma | Mar 18 1:00pm
In reply to @sallyw133 "Mestinon It’s normally prescribed for myasthenia gravis but a side effect is increased gi motility. It..." + (show)
@sallyw133

Mestinon It’s normally prescribed for myasthenia gravis but a side effect is increased gi motility. It didn’t work until I added in the Miralax. The combo has been working great! Hoping it continues!

Jump to this post

Has it continued to work? I find that treatments often work for a little bit but then stop.

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1 reply
sallyw133 | @sallyw133 | Mar 18 7:53pm
In reply to @linma "Has it continued to work? I find that treatments often work for a little bit but..." + (show)
@linma

Has it continued to work? I find that treatments often work for a little bit but then stop.

Jump to this post

Yes, it has continued to work as long as I use it with the Miralax. Alone, it did not work for me. Not perfect, but leaps and bounds better than where I was a year ago which was on the verge of a colectomy. I have to juggle the Miralax as sometimes it works a little too much, but for the most part, it's all going pretty well.

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1 reply
linma | @linma | Mar 19 7:38am

That's so great to hear. Do you mind me asking what your dosing is? Did any other drugs work for you? I thought I had tried just about everything, but I hadn't heard of this yet. The only treatment being recommended to me right now is a colectomy, but I'm not ready to take that leap yet. I'm only 40. I'm scheduled to go to Mayo Clinic in May and am hoping they have some other ideas...

REPLY
tela | @tela | Mar 20 2:34pm
In reply to @sallyw133 "Yes, it has continued to work as long as I use it with the Miralax. Alone,..." + (show)
@sallyw133

Yes, it has continued to work as long as I use it with the Miralax. Alone, it did not work for me. Not perfect, but leaps and bounds better than where I was a year ago which was on the verge of a colectomy. I have to juggle the Miralax as sometimes it works a little too much, but for the most part, it's all going pretty well.

Jump to this post

Thank you for sharing this update! Happy to hear you have found some relief. I would also like to hear your regimen with Mestinon and Miralax.

REPLY
sallyw133 | @sallyw133 | Mar 20 4:15pm

I take 60 mg of Mestinon 3 times a day and usually 1/2 cap of Miralax every morning in my coffee. If I need to, I increase or decrease Miralax or take a little Calm Mag powder at night.

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