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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@farleydove

Thank you for the input. I have this condition. For some reason I tried Metamucil years ago and I didn't like it- I didn't think it helped, so I stopped trying. After reading your comments, I think I'll try it again, as this is really messing with my health. Thanks.

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I too found out through a colonoscopy. Very torturous and redundant. I have found Metamucil plus vitamins with a hefty glass of water and sitting with coffee each morning keeps me on a regular schedule. Along with exercise.

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Yes, I am 70 and JUST found out I have a redundant/tortuous colon from a colonoscopy! So crazy- it explains the lifelong constipation, TERRIBLE colonoscopy preps ( longer colon= up all night on the toilet instead of a few hours- and even then it’s not a clean colonoscopy).
I have always just managed this on my own with fiber capsules, a handful of almonds every day. No one has ever diagnosed it before now or helped me with it. It’s a very delicate balance eating-wise for me. Can’t eat too much fiber, must get enough.
Because of this, surgeries can really mess you up because anesthesia stops your colon. So in my life I’ve had rectal surgery (in my 30s) , and after a spinal fusion I developed a rectocele. A very kind Physician’s Assistant (Michele at Dr. Penenberg’s at Cedar’s Sinai- thank you!) gave me a prescription for Movantik to take the day of my first total knee replacement surgery a couple years ago and then a few days after. Miracle! Was able to go the next day. Usually it has taken as long as 12 days after a surgery!
Moral of the story is to be very careful not to let yourself get constipated, even if you need a glycerin suppository. I make sure I go every day and don’t really leave my house until I do. So inconvenient! But it keeps me out of trouble. Easier to schedule stuff later now that I’m older, harder when I had little kids. Hang in there! You can manage it without surgery- just be very diligent.

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I also suffer from an elongated colon . I have had constipation daily for almost 24 yrs now . This problem has gotten so bad that any kind of bowel movement is extremely difficult to impossible. Eating has become an absolute no no . Laxatives do nothing. Fiber does not help. Drinking lots of water just makes me urinate more. A colonoscopy is impossible. The colonoscopy prep kit that is supposed to clean you out does absolutely nothing. Doctors have taken a CT scan of my colon so they know what I'm dealing with, but won't do anything about it. So I'm pretty much on a liquid diet. So I know what you are going through.

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Yes, and according to my doctors, I have a grossly redundant colon and a doctor suggested removing part of it and said it would help me have a normal life but I did not do that. We moved out of state and the new gastroenterologist said he would never remove part of a colon unless it was a medical reason to because of a problem, but not the case with me, and he told me to take MiraLAX every morning and drink plenty of water each day for the rest of my life. After a week, the MiraLAX did its job and continues to, and if I ever eat badly with not enough water and get stopped up then I do it (take miralax) in the morning and night for a day or two. I also just recently realized I eat faster than everyone and do not chew my food so I now take the time to do that before wolfing it down. Laxatives and fiber supplements never worked for me because they create more stool and MiraLAX just brings water in to the colon. Also, once a month or so I heat up in 8 ounce glass in the morning for five days of prune juice with pulp and drink it . I don’t know if that will help but I’m thinking your doctor can advise you. (I did not want part of my colon removed because my father had that done and it created scar tissue, which created its own problem when he had a blockage that needed emergency surgery, so the thought of doing that scares me unless of course, there is a Medical need.

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@sag1313

Yes, and according to my doctors, I have a grossly redundant colon and a doctor suggested removing part of it and said it would help me have a normal life but I did not do that. We moved out of state and the new gastroenterologist said he would never remove part of a colon unless it was a medical reason to because of a problem, but not the case with me, and he told me to take MiraLAX every morning and drink plenty of water each day for the rest of my life. After a week, the MiraLAX did its job and continues to, and if I ever eat badly with not enough water and get stopped up then I do it (take miralax) in the morning and night for a day or two. I also just recently realized I eat faster than everyone and do not chew my food so I now take the time to do that before wolfing it down. Laxatives and fiber supplements never worked for me because they create more stool and MiraLAX just brings water in to the colon. Also, once a month or so I heat up in 8 ounce glass in the morning for five days of prune juice with pulp and drink it . I don’t know if that will help but I’m thinking your doctor can advise you. (I did not want part of my colon removed because my father had that done and it created scar tissue, which created its own problem when he had a blockage that needed emergency surgery, so the thought of doing that scares me unless of course, there is a Medical need.

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I hope so as it’s so frustrating. I don’t know if you had your surgery yet or not but hope it’s a success and no more problems for you. By the way - I love your profile pic.

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I’ve also been suffering same issue. Been told by number of doctors that removing “part” of colon is not solution to this problem. Used to this, but not current protocol. Have you had any testing done to see if you have slow motility, like a Smart Pill or bowel marker study? A few gi’s have also told me that most people, after years of constipation, will develop a redundant/tortuous colon from the straining. That alone will not cause symptoms. There are also prescription drugs, Amitiza, Linzess, Trulance, Motegrity. Have you tried any of these? Have you visited a skilled gi? Surgery would be your last resort when none of these things provides any relief. Then, I would be sure it’s a competent colo-rectal surgeon who will discuss all your options. Best of luck to you! Oh, and if you haven’t tried it, sometimes 1 tbsp of mineral oil at bedtime does help!

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Just diagnosed after rectal prolapse surgery and finding this site very helpful.
Before the surgery I took Metamucil daily which kept me regular but now I suffer from constipation and wondering if I should stop the Metamucil which seems to make it worse. Maybe it’s plugging me up since it thickens in the colon?
Thanks for the tips.

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@farleydove

Thank you for the input. I have this condition. For some reason I tried Metamucil years ago and I didn't like it- I didn't think it helped, so I stopped trying. After reading your comments, I think I'll try it again, as this is really messing with my health. Thanks.

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Me too. But I'm reading that a lot of water along with it is necessary.

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@sag1313

Yes, and according to my doctors, I have a grossly redundant colon and a doctor suggested removing part of it and said it would help me have a normal life but I did not do that. We moved out of state and the new gastroenterologist said he would never remove part of a colon unless it was a medical reason to because of a problem, but not the case with me, and he told me to take MiraLAX every morning and drink plenty of water each day for the rest of my life. After a week, the MiraLAX did its job and continues to, and if I ever eat badly with not enough water and get stopped up then I do it (take miralax) in the morning and night for a day or two. I also just recently realized I eat faster than everyone and do not chew my food so I now take the time to do that before wolfing it down. Laxatives and fiber supplements never worked for me because they create more stool and MiraLAX just brings water in to the colon. Also, once a month or so I heat up in 8 ounce glass in the morning for five days of prune juice with pulp and drink it . I don’t know if that will help but I’m thinking your doctor can advise you. (I did not want part of my colon removed because my father had that done and it created scar tissue, which created its own problem when he had a blockage that needed emergency surgery, so the thought of doing that scares me unless of course, there is a Medical need.

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I have a redundant colon and do everything you are doing. My main difference is I had my gallbladder removed 30+ years ago (I am 60 years old). My body does not digest food well or quickly. I take the Zen Wise Digestive Enzymes and have found them to be extremely helpful and affordable. If I am eating anything high in fat I take 2 Cholacol. Intermittent fasting has helped me as well. I normally only eat between noon and seven but that is easy for me. I do not do it to diet, but to assist with my digestion. It did help me lose 10 lbs I had wanted to lose for a decade though. I do order Clear Lax from Sams as it is much cheaper than the Mira Lax and works equally as well for me. I eat an apple or an orange every day and drink an electrolyte drink throughout the day. I usually get around 16 + hours of exercise a week I do not trust doctors as I have never had a good experience with one and rely on groups like this to navigate my way through. So far so good and the very best of luck to you

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@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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I had the exact same surgery in November, and the same thing: a mobile cecum.

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