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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@sallyw133

I’ve just seen a pelvic floor specialist/colo-rectal surgeon. Definitely have pelvic floor issues which are impacting constipation. They are bringing in a new female gi that specializes in slow transit colon. Both In new Dept only treat women. I am so excited to maybe finally find help. In meantime, Motegrity, Amitiza, Miralax, 8-10 glasses of water and tbsp of mineral oil at bedtime. Maybe look into any of these you haven’t tried. I’m with you. This whole thing sucks. Trying to juggle what to take, not take, too little, too much. I’m at my sons this weekend. Didn’t go this morning so now I’m in a panic. Afraid to take too much last night because going to zoo this morning. Can’t win.

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What are the signs that pelvic floor dysfunction is causing constipation? I have had every GI test in the book and tried every constipation med on the market.

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@chronicallyilljade

What are the signs that pelvic floor dysfunction is causing constipation? I have had every GI test in the book and tried every constipation med on the market.

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I had gone for my annual gyno visit and he noticed my PF muscles were very tight and tender but never said to do anything. I researched it and read that there is a correlation between them and constipation. At my next gi visit I asked him and he said it definitely could have an impact on my constipation and referred me to a PF therapist. Sometimes they do special tests that can measure if you aren’t able to correctly relax and contract the appropriate muscles or push out the stool (not painful but kind of uncomfortable and embarrassing) you can look them up. They aren’t normal gi tests. The PF therapy helps with all that. I’ll admit, it is awkward at first, but it has definitely helped me. Side benefit. Sex has been totally painful for me for years and every dr said it was post-menopausal dryness and gave me creams that never worked. I can now enjoy it pain-free at 64! It just might be work checking into if nothing else is working.

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@sallyw133

I had gone for my annual gyno visit and he noticed my PF muscles were very tight and tender but never said to do anything. I researched it and read that there is a correlation between them and constipation. At my next gi visit I asked him and he said it definitely could have an impact on my constipation and referred me to a PF therapist. Sometimes they do special tests that can measure if you aren’t able to correctly relax and contract the appropriate muscles or push out the stool (not painful but kind of uncomfortable and embarrassing) you can look them up. They aren’t normal gi tests. The PF therapy helps with all that. I’ll admit, it is awkward at first, but it has definitely helped me. Side benefit. Sex has been totally painful for me for years and every dr said it was post-menopausal dryness and gave me creams that never worked. I can now enjoy it pain-free at 64! It just might be work checking into if nothing else is working.

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Okay thank you so much! I don't have pain during intercourse and have never had intercourse ( I am 20) but I do have internal vaginal pain occasionally and PF dysfunction might be the cause.

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@chronicallyilljade

Okay thank you so much! I don't have pain during intercourse and have never had intercourse ( I am 20) but I do have internal vaginal pain occasionally and PF dysfunction might be the cause.

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Sorry, didn’t realize your age. It still may be something to at least look into if you are having pain and nothing else is helping. There is a lot of information online about it and I had no idea how the PF muscles played such an important role in everything in that “area”.

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@sallyw133

Sorry, didn’t realize your age. It still may be something to at least look into if you are having pain and nothing else is helping. There is a lot of information online about it and I had no idea how the PF muscles played such an important role in everything in that “area”.

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

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@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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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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@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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@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

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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@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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