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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At a loss as to what foods to eat can’t find much on it. I was told a couple of weeks ago to join a class but they have not contacted me yet.

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I may have to consider taking probiotics!

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@mycnctds

Looks like you have everything under control! Am happy for you! I noticed you wrote "rid of the stomach issues surrounding my lack of gallbladder." May I ask what issues you experienced due to lack of gallbladder (GB)? Did you have cholecystectomy? Is it OK if you would please share those issues you had due to the procedure & lack of GB? It only stores bile, not essential, so I've read & been told. But I intend to keep all my body parts I was born with, unless they're diseased or causing pain & suffering & leads to other problems.

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Hi there, my understanding is bile breaks down fat. The pancreas creates bile and sends to the gallbladder to store. The gallbladder releases when you consume fat. When the gallbladder is removed the pancreas still creates bile but has no where to store and drips it into the intestines slowly. I was suffering every time I ate anything high in fat. A hamburger, steak, loaded baked potato are examples. I would be up all night. Now that I take enzymes, I can pretty much eat anything. As a footnote, I had my gallbladder removed when I was 30 and now 60. Never had a problem until I hit 50. Hope that helps and is clear. I am frustrated with conventional doctors as they all knew I had my gallbladder removed and ordered endoscopy’s but never once discussed enzymes or probiotics with me.

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Looks like you have everything under control! Am happy for you! I noticed you wrote "rid of the stomach issues surrounding my lack of gallbladder." May I ask what issues you experienced due to lack of gallbladder (GB)? Did you have cholecystectomy? Is it OK if you would please share those issues you had due to the procedure & lack of GB? It only stores bile, not essential, so I've read & been told. But I intend to keep all my body parts I was born with, unless they're diseased or causing pain & suffering & leads to other problems.

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@becky12

I'm in the same boat. Lifelong constipation (I'm 55) and bloating. I was diagnosed after getting yelled by the nurse for not being sufficiently empty for my colonoscopy. I drank every drop, but it had a long way to go to reach the exit LOL. My GI doc said next time we'll start a week ahead of time rather than 2 days.

Intermittent fasting has improved my bowels considerably, and I really hope, respectfully, to never be in your shoes! No fun! Hang in there:)

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I had a horrible gi dr tell me I didn’t clean out sufficiently after 4 days of barely eating, 2 days no eating and 2 days clean out. She was very rude and inconsiderate.

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@md123

Treating a child is so much different than an adult I am at a loss. I live with a torturous colon. As a 60-year-old woman, it is more difficult to live with as I age but I really work at it. Not a big believer in psychiatric drugs but that is me. I deal with it by taking Miralax daily. I get a minimum of 20 hours of exercise a week. I pay strict attention to my diet. Fiber enhancements like Metamucil make it worse for me as it tends to just build up and not pass. As I get so much exercise, and take MiraLax, drinking electrolyte beverages daily is a biggie. I also take ZenWise pre-probiotic/enzyme with each meal. That has made a huge difference in controlling bloating which is painful and got rid of the stomach issues surrounding my lack of gallbladder. Is her bilirubin normal? Mine was very low for obvious reasons. I start each day with oatmeal and for lunch, I have an apple with peanut butter. More fruit for a snack and then a normal dinner. I cook as I live remotely in the mountains and avoid processed foods. My weight tends to be on the low side to normal. Good luck with your precious daughter. When they hurt, we hurt.

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Is this the one you take?

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Treating a child is so much different than an adult I am at a loss. I live with a torturous colon. As a 60-year-old woman, it is more difficult to live with as I age but I really work at it. Not a big believer in psychiatric drugs but that is me. I deal with it by taking Miralax daily. I get a minimum of 20 hours of exercise a week. I pay strict attention to my diet. Fiber enhancements like Metamucil make it worse for me as it tends to just build up and not pass. As I get so much exercise, and take MiraLax, drinking electrolyte beverages daily is a biggie. I also take ZenWise pre-probiotic/enzyme with each meal. That has made a huge difference in controlling bloating which is painful and got rid of the stomach issues surrounding my lack of gallbladder. Is her bilirubin normal? Mine was very low for obvious reasons. I start each day with oatmeal and for lunch, I have an apple with peanut butter. More fruit for a snack and then a normal dinner. I cook as I live remotely in the mountains and avoid processed foods. My weight tends to be on the low side to normal. Good luck with your precious daughter. When they hurt, we hurt.

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Hi Everyone
My daughter is 9, since she was 1 she has always had stomach pain and we always thought I was related to food. We finally got a doctor to listen to us and found out she has a tortuous colon she takes osmolax daily she has also been on so many diets aswell as antidepressants but we can still not get the pain to go away. Anyone have any ideas this little girl is such a trooper and just wants to feel better.

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@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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I have a very similar situation going on here. Mirada never worked well so I did a little research and discovered Enulose. It works! I have been in pretty bad shape to the point that I cannot have a BM on my own. Tortuous colon. I take 1/2 glass of Enulose every 3 days. I tried to take it daily as prescribed but it made me too gassy. I can deal with the quick effects of it twice a week. Best to schedule your day around it. I really don't want to live this way either. I feel a ER visit is in my future.

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