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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Is this the same condition as Diverticulitis?

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Hello. Sorry to hear about your diagnosed condition. Although I have not been diagnosed with your diagnosis I have had constipation problems, even had to go to the Emergency Room recently.
A seemingly simple suggestion is to make sure by way of a daily routine of drinking water so that your minimum is 40-50 ozs.--or more--EVERY day. It is extremely important for Crohn's Disease--which I have had since birth--since water passes through more with such IBDs. I tried other osmotic laxatives at my family doctor's suggestion but find it gives me a very significant rash so I have discontinued any such osmotic products (e.g., MiraLAX). Although water is contained in fruit, soup, coffee, many products, etc., there is nothing as good as straight water even if you want to say "in addition to" the other amounts of water from indirect sources. I recommend using a daily Reminder with an alert system to which you can cumulatively insert the on-going quantity total of water intake as the day progresses. Using time periods, for example, such as 8AM-1PM, 1PM-6PM, & 6PM-11PM where you can see how you are doing throughout the day, otherwise you may wind up drinking a large amount late in the day which is not the most beneficial way as compared to watching it in an on-going manner. The same water bottle or container of which you know the quantity is best rather then making many entries of amounts from various containers. It should be an easy-to-estimate by eye quantity measuring event (just take a guess at the amount) so it is not burdensome and therefore inclined to be resistant to getting it accomplished. Good luck.

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@carcar

Is this the same condition as Diverticulitis?

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No it is not. Redundant and tortured colon means you have extra colon (redundant) and twisted (tortured). I do have some diverticulosis, but I haven’t had diverticulitis.

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@flguy

Hello. Sorry to hear about your diagnosed condition. Although I have not been diagnosed with your diagnosis I have had constipation problems, even had to go to the Emergency Room recently.
A seemingly simple suggestion is to make sure by way of a daily routine of drinking water so that your minimum is 40-50 ozs.--or more--EVERY day. It is extremely important for Crohn's Disease--which I have had since birth--since water passes through more with such IBDs. I tried other osmotic laxatives at my family doctor's suggestion but find it gives me a very significant rash so I have discontinued any such osmotic products (e.g., MiraLAX). Although water is contained in fruit, soup, coffee, many products, etc., there is nothing as good as straight water even if you want to say "in addition to" the other amounts of water from indirect sources. I recommend using a daily Reminder with an alert system to which you can cumulatively insert the on-going quantity total of water intake as the day progresses. Using time periods, for example, such as 8AM-1PM, 1PM-6PM, & 6PM-11PM where you can see how you are doing throughout the day, otherwise you may wind up drinking a large amount late in the day which is not the most beneficial way as compared to watching it in an on-going manner. The same water bottle or container of which you know the quantity is best rather then making many entries of amounts from various containers. It should be an easy-to-estimate by eye quantity measuring event (just take a guess at the amount) so it is not burdensome and therefore inclined to be resistant to getting it accomplished. Good luck.

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Good ideas. I do push fluids, and I do notice when I don’t, I suffer. Alarms are a good idea for people like us. Thank you.

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Hi @onaquest @flguy @carcar,

A redundant colon is an abnormally long colon, especially in the final section (called descending colon). A redundant colon also has additional loops or twists. Other names for a redundant colon include tortuous colon or elongated colon. https://www.healthline.com/health/redundant-colon
I’m tagging @darlia and @rsinger22 who've written about redundant colon, and they may be able to share their experiences.

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I have this condition and used to have problems with constipation, bloating and abdominal discomfort. I tried taking a Metamucil-type (generic) fiber powder in water each day and it's made all the difference! I have regular bowel movements and feel greet. My GI doc has me undergo a colonoscopy every 18 months, as he's found a number of polyps and I have a family history of colon cancer.

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I had a colonoscopy today. I read the report and one finding was a redundant colon, but no polyps or twisting this time. I looked it up and found redundant meant a colon that was longer than normal for the body, so it takes more time to do the colonoscopy. Further research lead to the importance of self care to prevent impaction and twisting. Next, I read your great posted question. It made me wonder why the I had no poly this time. But I still have bouts of intense pain, and the other symptoms you mentioned. Mine csn over something as simple as a 3 hour car trip and eating in a resteraunt.
My history includes emergency room visits with the symptoms you described. My story includes concurrent Afib incident.
Through my gassy, boated, and sometimes severe pained adulthood, here is some of the advice I have received: My GP said take fiber. Eat whole grains. However I was alergic to over the counter fiber stuff, and grain sensitive. Ground flaxseed helps. My gyneccologist (of all people) prescribed a good multi probiotic. This practically solved the problem for a few years, most of the time. (Must take pill every time I ate.) My health coach sold me a natural ground walnut, barley greens fiber product that was helpful, but I became allergic to it and it caused sinus problems. The mistake I made was to smell it. My Naturopath sold me on digestive enzymes a year ago, that helped. And they are quite expensive. Then, last fall my medical doctor who is trained in Mexico City and is an Internist advised that I go to nutrition meetings his asistant leads for free. It turned out to be a Whole plant diet. This means plant food only. No meat, milk, no animal product of any kind, no eggs, processed oil, not even olive oil, no processed sugar or fake sugar. No fake vegetarian food laden with salt. 6 to 8 glasses of water a day. No other drinks, unless soaking my own seeds. Manufactured almond milk has salt. There has been testimonies of colons healed that once were polyp prone and now are polyp free. Hmmm, I did not have a single polyp this time. Raw nuts and seeds are ok! I do not think whole seeds are good for polyps though. Following that diet has helped the inflammatory other problems I have too. In a pinch I have used simethacone. Probably not good in the long run. As I age, (with only one kidney doing the job of two) I have reduced ability to process excess fluids. Chewing my food very well and not overeating, moving during the day helps, too.
My thoughts are for you to be healed and that you find relief. I thank you for the details you shared. Key words for me is faith and self-discipline to follow the diet consistently. I just retired from teaching special education. So I am hopeful the less stress, and extra time will help me be closer to using my food as the main medicine/ fuel. Being out of pain and free from the gas and bloating is motivating. Sorry this is so long, I hope my journey gives hope and encouragement to fellow people with redundant colons. May they even untwist and depolyp (THANK YOU SURGEONS) And May we all listen and follow our Great Physician.

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Welcome to Connect, @karena65 and @teresagiselle.

I thought you might be interested in reading this journal article, which offers an in-depth look at redundant colon: https://www.wjgnet.com/1948-9366/full/v10/i2/6.htm

@karena65, as you said, "Key words for me is faith and self-discipline...” So often we tend to equate self-discipline with deprivation, giving up things or sacrificing joy. I thought I’d share an interesting take on self-discipline – something I had read a while ago – where the author encourages readers to associate self-discipline with inner strength, resilience and not giving IN rather than giving UP.

@teresagiselle, I’m glad to know that the fiber powder has helped you find some relief. Since you mentioned family history of colon cancer, I encourage you to also take a look at the conversations taking place in the Colorectal Cancer group on Connect: https://connect.mayoclinic.org/group/colorectal-cancer/
Besides colonoscopy, has your GI recommended any other therapy or surveillance steps?

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I have had IBS-C issues for as long as I can remember, but about 7 years ago they became chronic to the point where I can go a week (or more) without any bowel movement if I'm not taking laxatives. I have had dozens of tests, and the only useful information I have received so far was from a visit to the Mayo clinic in Rochester a little over a year ago, where they discovered I have a "highly tortuous colon" and could barely complete a colonoscopy. The recommendations at that time included increasing my fiber, which doesn't help at all. Other tests have also revealed that I have a partially prolapsed lower colon, but not to the point where surgery would be a good idea. Taking fiber supplements makes me extremely bloated and becomes unbelievably painful, and Miralax makes me sick to my stomach and doesn't do too much to move things along. I've tried different things with my diet, and right now, I mostly eat white rice (brown is too hard to digest), vegetables, and small amounts of protein. I feel like i'm going a little crazy trying different things like eliminating dairy or other food restrictions, but I don't know what else to do. I completely avoid gluten. I've been very active my whole life...have run marathons and done lots of strength training and different types of endurance races, but recently I don't have the energy for the types of training that these events require. @karena65 Do you have a resource that you can share on the whole plant diet? Is there any other advice anyone can share?

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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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