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 tiss @tiss

I had the same diagnosis re long, redundant , twisty colon and had awful constipation for my entire life. Colonoscopies were a nightmare back in the day when you were lucky to get a Valium. I am 62. 2 1/2 years ago I had a bowel obstruction from a cecal volulous and had to undergo emergency surgery (right hemicolectomy) to remove all of the ascending colon and then some. About 2 feet. It's been a long, hard recovery but with a good doctor, I've done pretty well with the bowel problems. Have been constipated twice since surgery. My colon had a rotated cecum-- rare, congenital bowel malformation that no test can detect unless you obstruct. The surgery itself is an awful recovery but, I'm grateful to be alive since the mortality rate for a cecal volvulus is high. I don't know if the rotated cecum has anything to do with the colon being extra long and twisty.

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@tiss I hear your pain. I would go to the emergency room with terrible pains, and they would just give me pain medicine and xray and tell me I was constipated and tell me to go home eat fiber drink water. It wasn't until I had the surgery to.Remove part of my colon that I was happy. It was so long that it looped up over my liver. I still have constipation, but it doesn't last as long as it did. And it's easier to manage.

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Hi
I have your condition as well as colonic inertia. My bowel has stopped working. I recently had a colonoscopy which has to be abandoned due to the paediactric scope could not get through. I had a Scan using a scope and gas to widen the bowel and take photos. So I have got to the stage where all conservative options have been tried and failed. My colon is stringy and has large blockage. I have just had this scope done so waiting to see WHEN I will be having surgery. I will be having an end ileostomy and will have a stoma and bag. I am looking forward to the completion of this surgery so I can finally have some quality of life. At present I have to be careful what I eat so I dont cause large stools. The only way I can have a bowel motion is by using a bowel prep picasolax once a week. These conditions absolutely drain you. I wish you well. I am in New Zealand.

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I have been diagnosed with a tortuous colon also. I am 5' tall and weigh about 175 lbs, but used to weigh 220 lbs. My gastro guy told me that the excess fat in my abdomen caused it by stretching my colon out and it is too big for my height. Amazing thing is that when I weighed 220, my colonoscopy didn't reveal a tortuous colon. I am on the lookout for a new gastro guy.

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Profile picture for shirls1953 @shirls1953

Hi
I have your condition as well as colonic inertia. My bowel has stopped working. I recently had a colonoscopy which has to be abandoned due to the paediactric scope could not get through. I had a Scan using a scope and gas to widen the bowel and take photos. So I have got to the stage where all conservative options have been tried and failed. My colon is stringy and has large blockage. I have just had this scope done so waiting to see WHEN I will be having surgery. I will be having an end ileostomy and will have a stoma and bag. I am looking forward to the completion of this surgery so I can finally have some quality of life. At present I have to be careful what I eat so I dont cause large stools. The only way I can have a bowel motion is by using a bowel prep picasolax once a week. These conditions absolutely drain you. I wish you well. I am in New Zealand.

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@shirls1953 I am so sorry to hear how bad it has gotten. I am still in the "try anything phase" with doctors to see what works. I did just find out through a endoscopy and 24 PH manometry that I have a Hill Grade lV esophageal flap meaning it is the most severe and does not close, so all my food and stomach acid moves to my esophagus, causing inflammation in my lungs from microaspirations and inflammatory stomach and esophageal lining. Biopsied and it is not cancerous yet, thankfully. I have very low motility so we are trying larger doses of Amitiza, but I have not had great success with this.

I pray your surgery brings you relief and new blessings to your life pain free.

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Profile picture for julsnealey @julsnealey

@shirls1953 I am so sorry to hear how bad it has gotten. I am still in the "try anything phase" with doctors to see what works. I did just find out through a endoscopy and 24 PH manometry that I have a Hill Grade lV esophageal flap meaning it is the most severe and does not close, so all my food and stomach acid moves to my esophagus, causing inflammation in my lungs from microaspirations and inflammatory stomach and esophageal lining. Biopsied and it is not cancerous yet, thankfully. I have very low motility so we are trying larger doses of Amitiza, but I have not had great success with this.

I pray your surgery brings you relief and new blessings to your life pain free.

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@julsnealey
I have had gastritis and also have that to a lesser degree. I think that for me that will be better when I have my ileostomy as the bowel also pushes up into the stomach. The bowel goes across under the stomach to.the other side so.wgen it's big and full the stomach has a smaller space.

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