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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@judithfraser000

I take magnesium at night and probiotics after meals. I also drink water with meals as well as inbeteen. Yes I have flare ups when I eat hard to digest foods or large meals.

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The struggle is real 😫

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I suffer from severe constipation as well. It's horrible. I stay bloated. No matter what I eat it doesn't help. Tried every med out there. I also have gastroparesis that doesn't help either. Once a week I take a laxative. God bless you

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@linh

My cat had constipation recently and the Veterinarian said to give it canned pumpkin. It worked great. My Physical Therapist said her Veterinarian recommended it for her dog's diarrhea. If this works with pet's G.I. problems I am wondering what pumpkin's effects are on humans - Does anybody happen to know?

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Pumpkin and butternut squash have a fiber that retains moisture throughout your bowel, unlike other fiber sources such as Psyllium. I eat them every day and get a lot of help from them. I have cold cooked butternut squash with yogurt of applesauce with sesame tahini. You could also make a thick smoothie with it. I like them fresh, but out of season you can get them in a can.

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Dr Michael Cline at Cleveland clinic Ohio. He is an amazing Dr. I absolutely love him. He is an actual motility Dr. You can do a virtual appointment. My GI referred me to him. Goo's luck hon.
Diana

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@patches2050

Dr Michael Cline at Cleveland clinic Ohio. He is an amazing Dr. I absolutely love him. He is an actual motility Dr. You can do a virtual appointment. My GI referred me to him. Goo's luck hon.
Diana

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He actually was my dr for about a year and a half. Because he specializes more in upper gi motility, he referred me to a new gi dr there who I immediately hated. There was also a problem bc he was in Ohio and I’m in PA. My hospital wouldn’t accept orders from him for X-rays, etc. So I’m seeing a motility speciality at UPMC in Pittsburgh now.

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Yes! History of slow colonic transit, but newly diagnosed (the problem has existed 20 plus years but finally had the diagnostic test to prove it). Status post 2 years cecal volvulus, lost 5 ft. of small intestine. While I know my small intestines adapted to the anatomical change, my colon remains sluggish. I also am missing my ileocecal valve due to the volvulus....all of this together puts me at risk for SIBO, which I have been treated for 4 times. I tried Amitiza and had nothing but adverse affects, just recently switched to Linzess, which seems to be a better fit (time will tell). I take 2 capfuls of Miralax twice daily, a magnesium cutrate supplement and Citrucel twice daily, and Senna-S and bisacodyl as needed. One of the best moves I made was to seek out a specialized RD. I worked with Neha Shah out of CA via Zoom. She was a huge help and gave me dietary guidance that my doctors were unable to provide. I would highly recommend seeking out a specialized RD as an adjuvant to other resources.

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@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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can you provide more info on how to get into this "bowel training"? I am in Minnesota and may consider that. thx.

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@tnmomof3

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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Do I understand that surgery totally removed your approximate six feet of colon? Left you with ONLY the small intestine then?
What is IRA? thx

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@schreib69

can you provide more info on how to get into this "bowel training"? I am in Minnesota and may consider that. thx.

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Not exactly sure. I applied for an apt at Mayo Gastroentrology. Had to send a packet with records, tests, procedures, etc. They told me upfront they only accept a small number of patients from hundreds seeking apts. I’m not too optimistic. I applied there once before for migraines. They refused because they said I had already tried everything they had to offer. Hard to believe because “I” eventually did figure it out on my own. Success rates are a big deal to donors. But I’m desperate at this point.

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