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Anyone else have a Redundant / Tortuous Colon?

Posted by onaquest @onaquest, Nov 7, 2018

Hello. Anyone else out there that has a redundant/ tortured colon? I was diagnosed with this a few years ago. I’m usually ok, but if I get constipated, I get sick for a week or two. Last year my gastroenterologist referred me to a surgeon for urgent surgery to remove some of my colon. The surgeon I ended up seeing (not on the recommended list by my gastro doc due to others not available for a long time) said he believed I could live with the redundant colon if I followed a low FODMAP diet. I tried the diet religiously, scientifically (I’m a scientist), and I found it’s not the food I eat that causes these bouts of constipation. The only item I’ve found that might cause the bouts is coffee every day. An occasional coffee seems fine. What has helped me stay regular in a big way is Benefiber (or any pure wheat dextrose generic) three times per day. Lots of fluid.

My gastro doc was upset with the surgeon and said I’d regret not having the surgery. He fears I will end up in an emergency situation. I have searched the Mayo site and don’t find anything about redundant/ tortured colon. Are any Mayo docs doing research or treat this condition? Anyone else suffer from this too?
Thank you! -Jayne

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Profile picture for amalynne69
amalynne69 | @amalynne69 | Apr 25, 2022
In reply to @amandaa "Hi @amalynne69 and welcome to Mayo Clinic Connect. Can you share a little more about your..." + (show)
Profile picture for Amanda Burnett @amandaa

Hi @amalynne69 and welcome to Mayo Clinic Connect. Can you share a little more about your medical journey and what you have been through?

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I have been suffering with bowel and upper GI issues for over 20 years. I have visible on scans an elongated colon, liver cyst, diverticula, and two hernias. I am on multiple medications, and have tried every diet I have been asked to. I have severe bouts of chronic constipation that eventually land me in hospital. I have been told I have IBS-C which I believe to be incorrect as my understanding is that I have enough physical anomalies to explain my symptoms. Waiting on referrals.

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Amanda Burnett | @amandaa | Apr 25, 2022
In reply to @amalynne69 "I totally understand. I sat down and read through years of reports today ... signs of..." + (show)
Profile picture for amalynne69 @amalynne69

I totally understand. I sat down and read through years of reports today ... signs of inflammation, malnutrition, chronic damage ... endless scans and blood work leading to more scans and blood work but never a resolution. Only more diets and pills.

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Hi @amalynne69 and welcome to Mayo Clinic Connect. Can you share a little more about your medical journey and what you have been through?

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amalynne69 | @amalynne69 | Apr 22, 2022
In reply to @sallyw133 "I just cannot imagine how you must feel. I know how frustrated I am and my..." + (show)
Profile picture for sallyw133 @sallyw133

I just cannot imagine how you must feel. I know how frustrated I am and my issues in no way come close to yours. I wish I had something to offer other than just my prayers and support. We are here for you.

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I totally understand. I sat down and read through years of reports today ... signs of inflammation, malnutrition, chronic damage ... endless scans and blood work leading to more scans and blood work but never a resolution. Only more diets and pills.

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1 reply
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amalynne69 | @amalynne69 | Apr 22, 2022

I have been struggling for years. In and out of emerg. I have come to believe surgery might be my only hope for a normal life.

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sallyw133 | @sallyw133 | Apr 10, 2022
In reply to @notmoff "Denalynn - Just hearing your description is exhausting. I hope you find some relief occasionally." + (show)
Profile picture for notmoff @notmoff

Denalynn - Just hearing your description is exhausting. I hope you find some relief occasionally.

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I just cannot imagine how you must feel. I know how frustrated I am and my issues in no way come close to yours. I wish I had something to offer other than just my prayers and support. We are here for you.

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1 reply
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stahnjohn | @stahnjohn | Apr 9, 2022
In reply to @chronicallyilljade "It's okay! Yes it is interesting how that works!" + (show)
Profile picture for chronicallyilljade @chronicallyilljade

It's okay! Yes it is interesting how that works!

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I was also diagnosed with pelvic floor disfunction and as well as causing chronic constipation, mine causes bladder pain, low back pain, especially if I lift something heavy. Interesting how it is all connected down there! Best wishes!

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ashweb901 | @ashweb901 | Apr 9, 2022
In reply to @chronicallyilljade "I was also diagnosed with IBS-C but none of the meds worked. I tried Motegrity, linzess,..." + (show)
Profile picture for chronicallyilljade @chronicallyilljade

I was also diagnosed with IBS-C but none of the meds worked. I tried Motegrity, linzess, colchicine, relistor, trulance, amitiza and over the counter meds. My barium enema showed I have a tortuous and redundant colon. I also was unable to have a movement after drinking lots of Golytely. It is so scary. Only thing GI can say might help now is surgery.

Have you been tested for Lupus or thyroid disease? Thyroid disease can cause chronic constipation and a whole list of other things. Normal blood tests are not always normal. The levels regular endos say we need are usually not enough. I recommend finding a holistic dr. Not all holistic drs believe the same things so explain before the consultation.

I believe I have heavy metal toxicity. That can cause chronic constipation. Again blood tests are not reliable and holistic drs are the main ones who treat it.

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Yes, it is awful to deal with such stubborn C. That heavy metal toxicity is some controversial stuff. I do have two copies of MTHFR so I'm squarely in the category that practitioners who over chelation are targeting, BUT I'm heretofore unconvinced to undergo IV treatments for that. It just seems like a money play. I do have hypothyroid and I do take synthroid for good levels. My next move is to get thyroid antibody tests.

Have you done chelation or other heavy metal treatment?

If I would eat stewed prunes and drink Bellway fiber with lots of water every day I wouldn't suffer near as much.

Ashley

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sallyw133 | @sallyw133 | Apr 9, 2022
In reply to @chronicallyilljade "That's great! What is the price range for that doc? I cannot afford most of them..." + (show)
Profile picture for chronicallyilljade @chronicallyilljade

That's great! What is the price range for that doc? I cannot afford most of them because I am unemployed due to my health and Im only 20 so I got sick before I really had a chance to work.

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I actually do not know yet. Will keep you posted.

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chronicallyilljade | @chronicallyilljade | Apr 9, 2022
In reply to @sallyw133 "I actually just made an appointment with a naturopath who does do heavy metal testing. I..." + (show)
Profile picture for sallyw133 @sallyw133

I actually just made an appointment with a naturopath who does do heavy metal testing. I also have chronic migraine and have just read that zinc and copper deficiencies can play a role. Tired of all docs just throwing meds at everything and when I ask about diet or other things I can do, never get any suggestions. So I figured, what can it hurt to give this a try. I’ve tried a hundred other things!

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That's great! What is the price range for that doc? I cannot afford most of them because I am unemployed due to my health and Im only 20 so I got sick before I really had a chance to work.

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1 reply
Profile picture for sallyw133
sallyw133 | @sallyw133 | Apr 9, 2022
In reply to @chronicallyilljade "I was also diagnosed with IBS-C but none of the meds worked. I tried Motegrity, linzess,..." + (show)
Profile picture for chronicallyilljade @chronicallyilljade

I was also diagnosed with IBS-C but none of the meds worked. I tried Motegrity, linzess, colchicine, relistor, trulance, amitiza and over the counter meds. My barium enema showed I have a tortuous and redundant colon. I also was unable to have a movement after drinking lots of Golytely. It is so scary. Only thing GI can say might help now is surgery.

Have you been tested for Lupus or thyroid disease? Thyroid disease can cause chronic constipation and a whole list of other things. Normal blood tests are not always normal. The levels regular endos say we need are usually not enough. I recommend finding a holistic dr. Not all holistic drs believe the same things so explain before the consultation.

I believe I have heavy metal toxicity. That can cause chronic constipation. Again blood tests are not reliable and holistic drs are the main ones who treat it.

Jump to this post

I actually just made an appointment with a naturopath who does do heavy metal testing. I also have chronic migraine and have just read that zinc and copper deficiencies can play a role. Tired of all docs just throwing meds at everything and when I ask about diet or other things I can do, never get any suggestions. So I figured, what can it hurt to give this a try. I’ve tried a hundred other things!

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