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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@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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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

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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@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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@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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Had first colonoscopy ten years ago. The procedure was long and it took me 24 hours to fully recover from sedation. I was told I had a tortourous colon.
Only ten years later in for second colonoscopy I was told I had been given extra sedation during the first procedure, so I needed to inform all the medical staff of that historyl
I will be scheduling my next colonoscopy, unfortunately with a new physician. I am anxious that this doctor understand my situation and will proceed cautiously.
I have IBSD, flare-ups, worry about risk of incontinence, and hope to find better advice and possibly medications to help.

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I, too, am learning to live with a tortuous colon, diagnosed in my last colonoscopy several months ago. I think I can feel where it is bent in a tight switchback because there is one spot in my gut where I feel discomfort and sometimes pain. Sometimes massaging that area seems to relieve the pain/discomfort. I, like many say, am bloated all the time, have tried the low FODMAP diet to little avail, avoid gluten and a lot of dairy because they both seem to bring on severe diarrhea, bloating and pain. I can’t leave the house until after 10AM because I make 3+ trips to the bathroom every morning, usually feeling like less than complete evacuations. I was told that there can be both constipation and diarrhea going on at the same time, some stool gets through but other is hard or impacted. I have tried Miralax and need to go back to it. I had cut the dose to 1/2 capful every few days. It didn’t have a lot of effect but maybe I didn’t use it long enough in that way. The recommended dose was too much. The only thing that gave relief was a RX for a special gut-related anti-biotic after testing positive for an overgrowth in the colon. For about 2 weeks my gut felt normal but the NP would not refill the RX again.

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I posted this as a reply to a comment below — may be best situated here.
——————————-
I, too, am learning to live with a tortuous colon, diagnosed in my last colonoscopy several months ago. I think I can feel where it is bent in a tight switchback because there is one spot in my gut where I feel discomfort and sometimes pain. Sometimes massaging that area seems to relieve the pain/discomfort. I, like many say, am bloated all the time, have tried the low FODMAP diet to little avail, avoid gluten and a lot of dairy because they both seem to bring on severe diarrhea, bloating and pain. I can’t leave the house until after 10AM because I make 3+ trips to the bathroom every morning, usually feeling like less than complete evacuations. I was told that there can be both constipation and diarrhea going on at the same time, some stool gets through but other is hard or impacted. I have tried Miralax and need to go back to it. I had cut the dose to 1/2 capful every few days. It didn’t have a lot of effect but maybe I didn’t use it long enough in that way. The recommended dose was too much. The only thing that gave relief was a RX for a special gut-related anti-biotic after testing positive for an overgrowth in the colon. For about 2 weeks my gut felt normal but the NP would not refill the RX again.

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@ceclark41

My Health, My team! Perhaps the financial demands of the times require seeing more patients. i do request more records after a medical appointment, about a month later. I get tired of doing that. Sometimes I read about something that I would like to discuss with that provider.

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What is my health my team? I’ve been off Mayo for a while..I guess since I did the questionnaire & was turned down. I’m still in a great deal of pain, mostly gut. My memory is shot. Someone mentioned in a post to me that I should check out “Undiagnosed”? I think that’s what he called it. Can anyone verify.
I’m actually surprised I’m still alive…well since I am, and I’m merely existing, I need to do something. My whole family is falling apart

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@ejrcfh

Had first colonoscopy ten years ago. The procedure was long and it took me 24 hours to fully recover from sedation. I was told I had a tortourous colon.
Only ten years later in for second colonoscopy I was told I had been given extra sedation during the first procedure, so I needed to inform all the medical staff of that historyl
I will be scheduling my next colonoscopy, unfortunately with a new physician. I am anxious that this doctor understand my situation and will proceed cautiously.
I have IBSD, flare-ups, worry about risk of incontinence, and hope to find better advice and possibly medications to help.

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Just went through this and you would think my dr who is a motility specialist would have known better. Had me do a 3-day low residue diet which is basically high-carb no-fiber prior. What it did was totally constipate me so I was behind going into the prep. Did the jug of Golytely. Thought I was good. Nope. Couldn’t get all the way in. Told me my colon was like a roller coaster. Next time, no low-residue, two-day prep. More Golytely. So talk to your doc about this Before!

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