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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@sallyw133 By the way, at my first appointment with my gastroenterologist, he had me do a bowel purge before doing anything else. If you're interested, you mix one 32 oz. Gatorade with 7 capfuls of Miralax and drink it all over a 12 hour period. And you can eat like you regularly do, no fasting. And needless to say, you don't want to make plans to go anywhere after drinking that concoction. I have a membership at Sam's Club so I buy their cheaper brand called ClearLax - it's the same thing as Miralax.

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@dsheahan1951

@sallyw133 By the way, at my first appointment with my gastroenterologist, he had me do a bowel purge before doing anything else. If you're interested, you mix one 32 oz. Gatorade with 7 capfuls of Miralax and drink it all over a 12 hour period. And you can eat like you regularly do, no fasting. And needless to say, you don't want to make plans to go anywhere after drinking that concoction. I have a membership at Sam's Club so I buy their cheaper brand called ClearLax - it's the same thing as Miralax.

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That would seem to be less dehydrating than the Golytely. I was actually shaking and then had diarrhea for 5 days after. I’ll try this next time. Thanks!

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@bgiddio

@sallyw133
Hi Sally, I have had Gerd, gastritis, constipation for years, have been to 4 of 5 Doctors, only to be told to take laxatives. Finally went to a good gastroenterologist, who did a colonoscopy and diagnosed me with tortuous colon, pancreatic insufficiency, lot of inflammation. He put me on Creon a prescription for pancreas enzymes and mesalamine for inflammation. I took my information to a nutritionist. She put me on a diet that was high in nutrition, basically soft foods, breakfast and lunch were smoothies with almond milk, protein powder, fruit, veggies, MCT Oil. She gave me a whole folders of recipes of lunches and dinner, soups. I chose six meetings on line with her for questions and suggestions. She was great, that was six or more months ago. Its helped with stomach issues and constipation, as long as I stick to it.
Feel free to ask me any questions.

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Hi, this is very helpful. Would you mind sharing a little more about your smoothies you do for breakfast and lunch. What kind of protein powder do you use and vegetables and fruit? I too have a tortuous colon. Struggled my whole life with constipation. Diagnosed with colonoscopy at 18, now 34. Tried all kinds of medicine. I take miralax and motegrity and still get blockages on my lower left side where the kinks are really bad. I'm thinking about doing smoothies for breakfast and lunch too now from your suggestion. Thank you so much to everyone on this site. It gives me hope.

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@sallyw133

That would seem to be less dehydrating than the Golytely. I was actually shaking and then had diarrhea for 5 days after. I’ll try this next time. Thanks!

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@sallyw133 Don't use MiraLax/ClearLax for your colonoscopy preps unless your doctor says it's ok.

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@sickofbeinsick1

I also have long torturous colon. GI surgeon noted “the colonoscopy was technically difficult & complex due to restricted mobility, a redundant colon, significant looping & a torturous colon”.
That was in ‘18.
They referred to patient (me) with severe systemic disease...doesn’t sound promising .

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Here it is 5 of 2022. Just saw this…prolly cuz I was moved to “bones & joints”. hip rev in ‘20. Stomach STILL a mess. No I’ve not been diagnosed w/ Crohns or UC. IBS, gastritis, diverticulosis, spastic colon…& anything else that fits in there. Have 10 mg Amitriptyline, may help for a short time, not usually, or completely. Better than nothing. I give

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Anyone have any experience with a tortuous colon? Mine apparently winds so much that no Dr. has been able to see all of it. They did a colonoscopy and could only see about 50% of it, did a barium enema and could still only see part of it after using 3 bags of barium.
My only symptom has been some blood in my stool and lifelong constipation, but it (blood in stool) has been going on for a few months but I'm getting no answers. My blood tests were done right away and they were normal. I'd just like to hear from ANYONE with experience with this. The unknown is scary. Thanks!!!

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@kayla1988

Hi, this is very helpful. Would you mind sharing a little more about your smoothies you do for breakfast and lunch. What kind of protein powder do you use and vegetables and fruit? I too have a tortuous colon. Struggled my whole life with constipation. Diagnosed with colonoscopy at 18, now 34. Tried all kinds of medicine. I take miralax and motegrity and still get blockages on my lower left side where the kinks are really bad. I'm thinking about doing smoothies for breakfast and lunch too now from your suggestion. Thank you so much to everyone on this site. It gives me hope.

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As far as smoothies, it has become my everyday breakfast, seems to get things going. I use a ninja blender, with one scoop of Genuine Health organic vegan protein powder suggested to me my nutritionist, with 2 raw veggies and 2 fruits, usually spinach. piece of zucchini, blueberries, strawberries, or anything you want to experiment with, also a tablespoon of
MCT oil, with flax powder, a 1/4 teas. ginger powder, 1/2 teas. cinnamon, with 3/4 cup of almond milk, and and some pomegranate juice. You can have oatmeal.
I highly recommend going to a certified nutritionist, unless you are lucky enough to find a Dr who is interested in any other direction than prescription meds and laxatives. My nutritionist
suggested blended soups for lunch, stick with soft foods for dinner.
I was strict in the beginning, and when I go off, I have problems, also have IBS just to complicate things. Happy to discuss anything, questions, etc.with you. Betty

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I just found to have a very tortuous colon. After a failed colonoscopy and a failed barium enema after almost 3 bags of barium, no one has been able to see more than half of it. The only symptoms I've had are life long constipation, but more recently blood in the stool that's been getting better but going on for months. They are supposed to have me meet and talk with the Dr. but I haven't heard from them yet and they said that several days ago. I've been trying to get answers for this since January. I take miralax and magnesium chloride to help relieve the constipation.

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@kalbin

I just found to have a very tortuous colon. After a failed colonoscopy and a failed barium enema after almost 3 bags of barium, no one has been able to see more than half of it. The only symptoms I've had are life long constipation, but more recently blood in the stool that's been getting better but going on for months. They are supposed to have me meet and talk with the Dr. but I haven't heard from them yet and they said that several days ago. I've been trying to get answers for this since January. I take miralax and magnesium chloride to help relieve the constipation.

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@kalbin, you are not alone. I moved your message to this existing discussion about tortuous colon. I did this so you can connect with others like @bgiddio @sickofbeinsick1 @dsheahan1951 @sallyw133 @kayla1988 @kayburnett @notmoff @anne4u and many others.

Kalbin, this is a new diagnosis for you and I'm sure you have many questions. Does the miralax and magnesium help with the constipation? Did the doctors have an explanation for the blood in your stool?

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@colleenyoung

@kalbin, you are not alone. I moved your message to this existing discussion about tortuous colon. I did this so you can connect with others like @bgiddio @sickofbeinsick1 @dsheahan1951 @sallyw133 @kayla1988 @kayburnett @notmoff @anne4u and many others.

Kalbin, this is a new diagnosis for you and I'm sure you have many questions. Does the miralax and magnesium help with the constipation? Did the doctors have an explanation for the blood in your stool?

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Thank you Colleen for putting my message in the right place, I appreciate it! I have had success with the miralax and the magnesium chloride, but the magnesium chloride is literally the ONLY thing that's helped me have regular bowel movements every day like normal people. The magnesium chloride was actually just recommended by an acquaintance who had digestive issues too. The doctors seem to have no idea why there is blood in the stool still, but seems it's suspected that it's due to all of the bends in my colon. Odd thing though is it's never done that bleeding thing until around December 2021. It's a bit scary, but I am not sick in any other way. They also say that the colon is enlarged due to a lot of gas in there. I have always had a lot of gas and I usually feel bloated most of the time even though I've lost 88 lbs ( yes intentionally and slowly!)
Any advice or words of experience are helpful on this even if it's not exactly the same I'd appreciate hearing from people thank you!!!

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