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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Hi Sally I am having the same problems and was finally sent for testing, it was found I have gastroparesis. I was put on to a med called domperidone. It help with mobility through the stomach and bowels. it has given my some relief, might be worth looking into this med for you. My doctor has me on MiraLAX which doesn't always work and I have been struggling for answers myself. Most of the meds I have tried ether cause terrible diarrhea or don't work at all. I find if I don't cleanse at least once a week I start to back up which cause a whole host of other problems. The go to med for me is called "Constella" I am in Canada so the name for the states might be LINZESS. I struggle to find a middle ground with this problem, maybe this post might bring other will similar people issues with more options.

Best of luck to both of us

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@paulr58

Hi Sally I am having the same problems and was finally sent for testing, it was found I have gastroparesis. I was put on to a med called domperidone. It help with mobility through the stomach and bowels. it has given my some relief, might be worth looking into this med for you. My doctor has me on MiraLAX which doesn't always work and I have been struggling for answers myself. Most of the meds I have tried ether cause terrible diarrhea or don't work at all. I find if I don't cleanse at least once a week I start to back up which cause a whole host of other problems. The go to med for me is called "Constella" I am in Canada so the name for the states might be LINZESS. I struggle to find a middle ground with this problem, maybe this post might bring other will similar people issues with more options.

Best of luck to both of us

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I will look into that, thanks! When you say you do a cleanse once a week, what do you use?
The Amitiza I take is similar to the Linzess you use.
The last month has been so bad with back and forth diarrhea and constipation, I finally went for X-ray. Sure enough, ton of retained stool. So yesterday, did colonoscopy prep. After all that, not even sure it really worked. Scheduled for foot surgery in a week. I’m in a panic because for three weeks I can’t put weight on it. So worried about getting to BR in time!

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I also have gastroparesis because of a neuromuscular condition, and I too struggle with constipation. Linzess gives me terrible cramping, and eventually diarrhea. I did try one called Motegrity that seemed to work a little better, but my insurance didn’t want to keep paying for it. If I don’t use a fleet enema every few days I literally don’t have a bm. I am interested in looking into a cecostony, but it seems to be more commonly done in pediatrics and I’m having trouble finding an adult provider who is familiar with it.

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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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@medicbynight

I also have gastroparesis because of a neuromuscular condition, and I too struggle with constipation. Linzess gives me terrible cramping, and eventually diarrhea. I did try one called Motegrity that seemed to work a little better, but my insurance didn’t want to keep paying for it. If I don’t use a fleet enema every few days I literally don’t have a bm. I am interested in looking into a cecostony, but it seems to be more commonly done in pediatrics and I’m having trouble finding an adult provider who is familiar with it.

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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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This surgery looks to be more for stomach issues?

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I use Linzess 290 with colace (softener) and reglan
Ask your Dr about that regimen. Feel better

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@medicbynight

I also have gastroparesis because of a neuromuscular condition, and I too struggle with constipation. Linzess gives me terrible cramping, and eventually diarrhea. I did try one called Motegrity that seemed to work a little better, but my insurance didn’t want to keep paying for it. If I don’t use a fleet enema every few days I literally don’t have a bm. I am interested in looking into a cecostony, but it seems to be more commonly done in pediatrics and I’m having trouble finding an adult provider who is familiar with it.

Jump to this post

I have never posted in here before so hello! But I just had to post after I read your comment. For over 15 years I have suffered with colonic inertia that progressively got worse. Last summer, my colon finally stopped working and I couldn't have a BM on my own anymore so I had to start doing high volume enemas every other day. I finally found a GI doctor who would listen and take me seriously. She referred me to an awesome colorectal surgeon and we decided to do a total colectomy with IRA. I had that done on January 26 and am now 5 weeks post op. The decision to have that surgery was not an overnight decision. Lots of thought and prayers went into it. But I can say now that even though it was a very rough surgery and rough recovery, I am glad that I finally had it done. I can now have BMs on my own! I had no major complications after surgery and so far my recovery has been routine here at home. Anyway, just had to share. I know the pain of having a slow and non working colon. Pathology report came back on mine as non diseased and looked normal. It was just pretty much dead, non working. Hope this can help someone. 💗 And I hope that you can get the help you need as well.

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Thanks so much for sharing your experience. Could I ask where you’re located?

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