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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I have always had chronic constipation. I have autonomic small fiber neuropathy and now my constipation is at a whole new level. What I have to take for a bowel movement is ridiculous. I am going for the smart pill next week. It’s the only thing that can see what’s going on in your small intestine. Also I am looking for a motility issue to see if the autonomic small fiber neuropathy is causing this.

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@dianecostella

I take the max dose of prune lax and unfortunately it has done nothing for me.

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I'm sorry to hear that. Unfortunately, this is something all of us with this condition go through. Trying, trying, trying something until we find something, a rhythm that works for us as individuals. We are all different. I know my system is touchy and it took awhile for my body to adjust to the prunelax. I would say a good week of steadily taking it. And some days I do not "go" as much as others but for the most part I've found it works great. I hope you give it a fair chance but I also understand if it doesn't work for you. Miralax does absolutely nothing for me. I understand. Jacque

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@euqcaj

I'm sorry to hear that. Unfortunately, this is something all of us with this condition go through. Trying, trying, trying something until we find something, a rhythm that works for us as individuals. We are all different. I know my system is touchy and it took awhile for my body to adjust to the prunelax. I would say a good week of steadily taking it. And some days I do not "go" as much as others but for the most part I've found it works great. I hope you give it a fair chance but I also understand if it doesn't work for you. Miralax does absolutely nothing for me. I understand. Jacque

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Thank you

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In reply to @dianecostella "Thank you" + (show)
@dianecostella

I have taken metamucil 3x a day for over 20 years because of tortuous colon. As a senior, that is not working. Have tried probiotics, no luck.
If you have not tried metamucil, it may work for you.

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I just was told from 2nd colonoscopy thatei now have redundant colon also.i feel as if I have a growth in my abdomen. Severe weight loss n pain in left groin.help! Would anyone no if ibgard would help?

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@jackieo67

I just was told from 2nd colonoscopy thatei now have redundant colon also.i feel as if I have a growth in my abdomen. Severe weight loss n pain in left groin.help! Would anyone no if ibgard would help?

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Have you been checked for Nutcracker syndrome?

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@lasirvent

Have you been checked for Nutcracker syndrome?

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No, I have seen orthopedic surgeon..he did MRI to rule out any spinal tumor (since severe wght loss). Is this something he would check? I've upcoming appt w him.also vascular surgeon consult (for the 2nd time)due to general surgeon saying she believes it involves veins

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@njme

I have taken metamucil 3x a day for over 20 years because of tortuous colon. As a senior, that is not working. Have tried probiotics, no luck.
If you have not tried metamucil, it may work for you.

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Have you tried Motegrity?

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@jackieo67

No, I have seen orthopedic surgeon..he did MRI to rule out any spinal tumor (since severe wght loss). Is this something he would check? I've upcoming appt w him.also vascular surgeon consult (for the 2nd time)due to general surgeon saying she believes it involves veins

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Have them check for vascular compression syndromes-there’s nine different ones-MALS, Smas, May-Thurner, Nutcracker, etc.

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Thanks! I've been reading up on it....u may have found me an answer....

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