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Slow gi motility with severe constipation

Posted by sallyw133 @sallyw133, Feb 28, 2023

I’ve posted here before under other topics but decided to start my own thread. Diagnosed three years ago
With extremely slow gi motility, stomach down, but symptoms primarily in colon which takes 82 hrs to process. Been to numerous drs, including motility specialists, and just no relief. Also claim some pelvic floor issues so I’ve done therapy twice. My main problem is finding a regimen to maintain some kind of regularity. I’m on Bethanichol, normally for urinary retention, but helps with motility, and Amitiza daily. Then add in mineral oil, senna, dulcolax as needed. The dailies help some, but not enough, so gradually add in others, then diarrhea. Or increase dose if dailies and same. Then there’s the “is it diarrhea or overflow” issue? My gi is little help. All questions go through nurse who never gets details right or doesn’t call back for days. I’d switch, but I have no idea who else to go to as can’t go to just a regular gi. I have been on every constipation med and have even consulted a surgeon re an ileostomy, but that just sounds like a whole new group of problems. Any one there share these issues?

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lonestarinitaly | @lonestarinitaly | Jan 16, 2024
In reply to @slangston "Sally, everything you said is ditto for me. I have a consult going in to colorectal..." + (show)
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Sally, everything you said is ditto for me. I have a consult going in to colorectal surgery at Mayo. I have had all of the normal GI slow motility tests done and taken all of the routine meds usually prescribed. I have to add to the Linzess 145mcg , Senna, Slow Move Tea, magnesum, sometimes magnesium citrate Liquid. If I add MOM it is more severe diarrhea. Actually it's diarrhea or nothing, but MOM will work for sure if I add it. I also take Bentyl 10 mg for the abdominal pain/bloating. The GI doctors I have seen in my area, do the routine tests and drugs and now told me that I need a totak ciolectomy with ileostomy. None of them "look outside of the box".
I read on the Mayo Rochester website that the colorectal department works with the GI motility clinic is which under the gastroenterogy department. I have been avoiding the surgery option for over a year.
I hope you are doing better and figured some of this out. Thanks for your post.

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What is MOM??

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pagray24 | @pagray24 | Jan 17, 2024
In reply to @sallyw133 "I’ve never heard of that procedure. Interesting. I asked my CR surgeon about a colostomy rather..." + (show)
Profile picture for sallyw133 @sallyw133

I’ve never heard of that procedure. Interesting. I asked my CR surgeon about a colostomy rather than ileostomy because all my research indicated much easier to live with. She wouldn’t consider and just offered up another surgeon for second opinion. However, I’ve often found doctors in same practice tend to think same.
Just came across program at Mayo on “bowel training” that has high success rate. Am considering though pretty involved with at least two trips of one to two week stays. They are in MN and I’m in PA. But I’m at desperation point!

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Hi, I'm in PA and considered the trek to MN Mayo. When they expressed concern that it may not work for me and would be out of pocket pay I had to reconsider. I'm in south eastern PA.

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judithclark | @judithclark | Jan 17, 2024
In reply to @pagray24 "Hi, I'm in PA and considered the trek to MN Mayo. When they expressed concern that..." + (show)
Profile picture for pagray24 @pagray24

Hi, I'm in PA and considered the trek to MN Mayo. When they expressed concern that it may not work for me and would be out of pocket pay I had to reconsider. I'm in south eastern PA.

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Your insurance probably has another med center to where you may be referred.
I live in Reno and the best doctors here say they do not have the expertise for my issues. My insurance also won’t cover the Mayo Clinic. Tomorrow I fly to Salt Lake City. I have an appointment with a colorectal surgeon at the University of Utah Medical Center. U of Utah is covered by my insurance.

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xiaolung | @xiaolung | Jan 17, 2024

Have you had a colonoscopy? Is your gut shorter or longer or twisted? Have you have a thyroid test?
I was having trouble with constipation and found that psyllium helped me because my body was pulling too much moisture out of the large intestine (feces) which would then make it hard to move out.
I read a book about cancer which had a chapter on constipation. I don't have the title. Anyway, psyllium to me is the best moderator. It acts to prevent constipation or loose bowels. I take mine with chocolate almond milk, every day, around noon. Start with a teaspoon of two and work up to a tablespoon.

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celia16 | @celia16 | Jan 18, 2024
In reply to @brendaharvey "I suffered for almost 4 years. Found a surgeon who did a Pyloroplasty on November 1..." + (show)
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I suffered for almost 4 years.
Found a surgeon who did a Pyloroplasty on November 1 and I am so much better.
Linzess really made me cramp all day (was in bed a lot).
The Motegrity was even worse for me.

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Can you describe the cramping? I was taking Lubiprostone twice a day until I started having rectal cramping in left side. I’ve never had anything like it. No cramping in belly though. It hasn’t returned since I stopped the meds. Just curious. I think Lubiprostone works like Linzess.

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researchmaven | @researchmaven | Jan 19, 2024

First, get a new GI doc. Consult Castle and Connolly. Thoroughly researched best docs - not a pay to play advertising platform. Why not go to a gifted doctor as opposed to an average one?

Second, look at your supplements. Melatonin absolutely stopped my motility, for example.

Third and last, have you thought about trying dietary enzymes...or have you been tested to see if you have a deficiency?

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oui1213 | @oui1213 | Sep 2 2:18am

If i do not make myself i would go 10 days without a BM and no pain. My GI doesn’t seem too concerned. This has been going on for almost a year. I am a nurse!! This isn’t normal. Have had every test. Tried every prescription. I can not go. When i do MAKE myself the pain is so so bad i vomit and sweat and want to cry. I am at the end of my rope

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amalynne69 | @amalynne69 | Sep 2 5:17am

My motility at its worst was 28 days. Good fibre, water, every kind of laxative ... My question would be, do you have any physical anomalies the docs are disregarding? I had 2 hernias the GI docs swore had nothing to do with my problem. But I have had an elongated colon my whole life, and only severe motility issues post hernias, caused by childbirth. A Nissen Fundiplication and an umbilical hernia repair, along with HRT for menopause related digestive issues, completely reversed my motility issues. With good diet, exercise, and moderate fibre, I have reduced my senna use to only a couple times in the last 3 years. My motility is 3-5 days. I was on ppis for GERD, domperidone for improper stomach emptying, Peglyte, Senna, and dulcolax, as well as other nerve agents such as lyrica, and painkillers.

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tdassler | @tdassler | Sep 3 12:36am

Low motility too. So scary at times. Sometimes I wait up to 10 days. Six years ago, I had emergency surgery for a strangulated hernia in my small bowel and I have never been the same. Taking Motegrity (not working), Miralax - too much, and trying to find a specialist. Sometimes I can't even drink a liquid diet, but still overweight. It isn't getting better. Ugh

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