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 joannedvr @joannedvr

I have a tortuous colon and trying to follow a low map diet. It seemed to help at first but now things have slowed down and having more discomfort. I started drinking apple juice (2-3 cups a day) and miralax when things are not moving as they should. It’s helping move things but still uncomfortable. I plan on flying soon and getting nervous about flying- gas, more discomfort due to flying. Any advice or recommendations?

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Hi, just came across your post. I have a tortuous colon too. I didn't know that when I flew from NY to Alaska got very constipated. I don't know what a map diet is. I am on a high fiber diet, at least 30 grams of insoluble fiber daily and bring figs and chia whenever I travel. But I find the best things are broccoli, arugula, kale which really make the difference for me. Good luck!

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Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

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Does anyone know if Dulcolax Stimulant (Bisacodyl) can be taken long term? I take it a few times a week, and also take Miralax at night. This seems to work for me. I have seen a lot of suspicion/concern around L/T use of stimulants but nothing scientific to say it's not ok. Thx all!

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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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I have a tortuous colon and trying to follow a low map diet. It seemed to help at first but now things have slowed down and having more discomfort. I started drinking apple juice (2-3 cups a day) and miralax when things are not moving as they should. It’s helping move things but still uncomfortable. I plan on flying soon and getting nervous about flying- gas, more discomfort due to flying. Any advice or recommendations?

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Profile picture for evar @evar

Thank you for this. I, too, have lifelong constipation which is now mostly managed successfully with 600-900 mg Magnesium Citrate daily and a probiotic (either Inner-Eco or Zenwise, which I learned about from a member on this site). I have a known "severely" tortuous colon and imagine my evacuation rate is very slow, though I've never done the smart pill. I have two questions for you. One, gluten. I confess I have never done the full gluten-free diet because so many people told me it was a fad and that unless you have celiac it's not a likely culprit. Your report makes me wonder if it's worth trying. Two, have you suffered back pain/joint instability? I feel my hypermobile joints - and in particular my Sacroiliac Joint dysfunction - is directly linked to my large/stressed out/tortuous colon. My GI doc doesn't seem to think they'd be related, but I wonder, anecdotally if others have this experience. My 21 year old daughter seems to have a similar set of symptoms (constipation/SI dysfunction). We do not have IBS. Thanks!

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I have the SI problem which showed up after a diagnoses of redundant colon.
Never had either before age 69. I know that it is all related. I suspect it is autoimmune. I do not have any solutions. If you find one, please let me know.

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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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Profile picture for farleydove @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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Profile picture for amyvb @amyvb

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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Karen- I'm also Karen. I feel for you because I'm having increased issues as well. I would not eat white rice - that can actually cause constipation?
I'm new to this group and even though I've struggled with this for years. I'm just now realizing what it is. Now I don't feel crazy.

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Profile picture for teresagiselle @teresagiselle

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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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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Thank you so much for your comments. I replied to another comment that I'm just now realizing this is what I e even struggling with for years.

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