1. < Digestive Health

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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tnmomof3 | @tnmomof3 | Mar 24, 2023
In reply to @schreib69 "Do I understand that surgery totally removed your approximate six feet of colon? Left you with..." + (show)
@schreib69

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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Hello. Yes, removed my entire colon except about 18in of rectum. IRA is a procedure where they attach your small intestine to the rectum so that you can have BM that way, with no bag. Google has some great drawn out images of what that looks like if that helps. 😊 Just Google, Colectomy with IRA. Hope this helps.

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sallyw133 | @sallyw133 | Mar 24, 2023
In reply to @tnmomof3 "Hello. Yes, removed my entire colon except about 18in of rectum. IRA is a procedure where..." + (show)
@tnmomof3

Hello. Yes, removed my entire colon except about 18in of rectum. IRA is a procedure where they attach your small intestine to the rectum so that you can have BM that way, with no bag. Google has some great drawn out images of what that looks like if that helps. 😊 Just Google, Colectomy with IRA. Hope this helps.

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So, could I ask the reason they removed the 6’ of colon? My surgeon said that option not available to me bc of slow transit. Ileostomy only option. I am getting a second opinion. I just don’t get why that would still be an issue if your colon is removed!

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tnmomof3 | @tnmomof3 | Mar 24, 2023
In reply to @sallyw133 "So, could I ask the reason they removed the 6’ of colon? My surgeon said that..." + (show)
@sallyw133

So, could I ask the reason they removed the 6’ of colon? My surgeon said that option not available to me bc of slow transit. Ileostomy only option. I am getting a second opinion. I just don’t get why that would still be an issue if your colon is removed!

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Because my colon no longer worked. It was paralyzed pretty much. Dealt with it for over 15 years, started out just very slow transit time and progressively got worse until one day, couldn't have a BM on my own. I was a good candidate for that type of procedure because I don't have any issues with my pelvic floor muscles. I had to be tested for all that prior. I would definitely get a second opinion. HTH 🤗

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schreib69 | @schreib69 | Mar 24, 2023
In reply to @sallyw133 "Not exactly sure. I applied for an apt at Mayo Gastroentrology. Had to send a packet..." + (show)
@sallyw133

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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Interesting. People end up doing their own "doctoring". . .
Still, you would have thought they could have given you a FREE consultation at least, for say 15 min, to consider your situation and give you their best guess and admit they have nothing you have not tried. . . I am glad you figured it out in the end.

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schreib69 | @schreib69 | Mar 24, 2023
In reply to @tnmomof3 "Because my colon no longer worked. It was paralyzed pretty much. Dealt with it for over..." + (show)
@tnmomof3

Because my colon no longer worked. It was paralyzed pretty much. Dealt with it for over 15 years, started out just very slow transit time and progressively got worse until one day, couldn't have a BM on my own. I was a good candidate for that type of procedure because I don't have any issues with my pelvic floor muscles. I had to be tested for all that prior. I would definitely get a second opinion. HTH 🤗

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Hearing this it bothers me that the doctors are not apparently understanding the situation enough to diagnose WHY the colon muscle and peristaltic muscle movement has slowed / stopped. You would think it is neurologically connected, right? So, why is the muscle, peristaltic system slowing and dying and WHY don't they know?

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sallyw133 | @sallyw133 | Mar 24, 2023

For me, personally, I never get an answer to that question. Why after literally my whole life with constipation that I managed just fine, did I literally overnite become too sick to eat, lose 30 lbs, and have multiple health professionals be unable to
figure out what was wrong with me. A year and a half until the slow transit diagnosis. Of course they blame everything on age!

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tnmomof3 | @tnmomof3 | Mar 24, 2023
In reply to @schreib69 "Hearing this it bothers me that the doctors are not apparently understanding the situation enough to..." + (show)
@schreib69

Hearing this it bothers me that the doctors are not apparently understanding the situation enough to diagnose WHY the colon muscle and peristaltic muscle movement has slowed / stopped. You would think it is neurologically connected, right? So, why is the muscle, peristaltic system slowing and dying and WHY don't they know?

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Exactly. I have asked and asked this same thing. And also that's why I put off having surgery do so long. I tried everything, researched everything, but I answer. My surgeon said that they still don't know why it happens in cases like mine and that it is rare. It also is seen more in women than men. I am sure though it has something to do with the brain/gut connection. I was born with a sensitive nervous system and looking back over my life, I am 44, I can see how it would definitely be connected. I am however so thankful that I had the surgery and I am ❤️‍🩹 recovering well. I can now have BMs on my own. It was the right answer for me.

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bb03 | @bb03 | Mar 26, 2023

Did medicines like Linzess not work for you before choosing surgery?

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peppatty12 | @peppatty12 | Mar 27, 2023

I too have slow motility and severe constipation. My doctor prescribed a new just FDA approved drug called the Vibrant pill. This is a pill that gets activated in a pod and then ingested. There is no medication in this pill and just activates the colon with gentle electrical stimulation.

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peppatty12 | @peppatty12 | Mar 27, 2023
In reply to @tnmomof3 "Exactly. I have asked and asked this same thing. And also that's why I put off..." + (show)
@tnmomof3

Exactly. I have asked and asked this same thing. And also that's why I put off having surgery do so long. I tried everything, researched everything, but I answer. My surgeon said that they still don't know why it happens in cases like mine and that it is rare. It also is seen more in women than men. I am sure though it has something to do with the brain/gut connection. I was born with a sensitive nervous system and looking back over my life, I am 44, I can see how it would definitely be connected. I am however so thankful that I had the surgery and I am ❤️‍🩹 recovering well. I can now have BMs on my own. It was the right answer for me.

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Can I ask what kind of surgery?

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