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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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jayjay12 | @jayjay12 | May 17, 2021
In reply to @dablues "I have a tortuous colon and was never told to do anything other take miralax, drink..." + (show)
Profile picture for dablues @dablues

I have a tortuous colon and was never told to do anything other take miralax, drink water, take stool softeners, and I have a colonoscopy and endoscopy tomorrow and I don't feel well at all. I feel like the pit of my stomach is bothering me. I do know they have problems doing my colonoscopies over the years. They get stuck in two places and I have been complaining this past year of problems with going to the bathroom and am just told take a double dose of miralax and to eat high fiber foods

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So sorry! It takes more than just Miralax or the like to help with the problem of a Tortuous Colon. I’ve suffered with it myself for as long as I can remember. I was told more fiber, fresh fruits & vegetables. That was it and it was after my colonoscopy. Of course, one doctor said I had then he moved. The next doctor said no you don’t. I also have IBS. My colonoscopy have been very difficult for them to do as long as I recall, and often I’d feel the pain while they were doing it! I’m in a new state now, and the GI doctor here says I DEFINITELY have it! So again told me to eat extra fruit and vegetables, and take Citricel or the like. Taking a fiber supplement actually backs me up more! I drink plenty of water too, always have. That isn’t the issue. So I stated just recently really focusing on the types of more seriously. Staying away from dairy, gluten products and processed food for the most part. Are you familiar with the FODMAP. You can try that form of illumination and see what sets you off. I’m really doing great now. I’m eating a lot of raw food when I can. Smaller amounts too. It’s a process for sure! I’m going to get this yet! They tried me on the Linzess and that was really a NASTY medication!! Terrible side effects. I wish you all the best in your search. Maybe a Nutritionist would help?

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dablues | @dablues | May 16, 2021

I have a tortuous colon and was never told to do anything other take miralax, drink water, take stool softeners, and I have a colonoscopy and endoscopy tomorrow and I don't feel well at all. I feel like the pit of my stomach is bothering me. I do know they have problems doing my colonoscopies over the years. They get stuck in two places and I have been complaining this past year of problems with going to the bathroom and am just told take a double dose of miralax and to eat high fiber foods

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s35flyer | @s35flyer | May 12, 2021

Very late here, but my redundant colon has led to me having diverticulitis. Bouts of constipation caused it.

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jayjay12 | @jayjay12 | Apr 28, 2021
In reply to @carcar "Is this the same condition as Diverticulitis?" + (show)
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Is this the same condition as Diverticulitis?

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No, it’s not.

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Apr 9, 2021
In reply to @personalhell "I'm sitting at the 4 week after colonoscopy diagnosed with severe tortuous colon and sent home...." + (show)
Profile picture for personalhell @personalhell

I'm sitting at the 4 week after colonoscopy diagnosed with severe tortuous colon and sent home. In constant discomfort but I've got the screaming and fainting pain under control since they did a major clean out when they found stool stuck in the walls of my ascending and in the cecum having to force it out. I got home and was still pooping. I saw the top surgeon in the area and was told there was nothing they can do but remove the colon completely because they can't take out just the twisted almost closed section. I'm down to eating mushed up food as I found solid food is the enemy. But I am miserable. And scared. I am scheduled for rectocele surgery April 4.. That was a terrifying moment when I did that, I made the mistake of pushing. I usually can only get any out if i push it out with my thumb but even that wasn't working. I was diagnosed years ago with hemorrhagic gastritis and gastroparesis by colonoscopy after I luckily cleared out my impacted colon. I had drunk too much water n not enough food and was severely deficient of potassium. I was ok for years except for a lot of bouts of symptoms here n there. I'm on lifetime potassium replacement therapy. I found that magnesium was to help better than M. O. M. so I picked up a cheap bottle n had decent results so I searched extensively for the best out there n came across Synergetic Magnesium Complex... Extra strength 500mg. It worked perfect till I did one of the bipolar no no's n stopped taking them without realizing or understanding why. I am back on it and now I'm going quite a bit every day but that leaves me with the feeling of a constant period cramp. I'm so glad I found this group cause the GI only recommended a virtual colonoscopy in 3 years and return to previous diet... That's it! Same with the surgeon, he basically refused to help because I'm still so young... 48... n he'd have to take it all and I'd be on a bag. Nothing else. WHY don't they tell you ANYTHING? SOMETHING? With it being rare and not easy to find info on it, ya'd think they'd recommend something... Even if just referring them to a website that can offer info. Well, thanks for existing, nice to know I'm not alone but sorry you have to have it too. I'll be following along n will comment when I have ANY changes or can offer a suggestion.

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I had an anode all monometry? 2 wks later, I got the report w/ no dr. follow-up!UNBELIEVABLE

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lasirvent | @lasirvent | Apr 5, 2021
In reply to @bonn "I'll try that, thanks! What dosage do you take?" + (show)
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I'll try that, thanks! What dosage do you take?

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I take about 1 1/2 teaspoon.

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bonn | @bonn | Apr 5, 2021
In reply to @lasirvent "I take it during the day, I believe it has more time to work. Hope this..." + (show)
Profile picture for lasirvent @lasirvent

I take it during the day, I believe it has more time to work. Hope this helps.

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I'll try that, thanks! What dosage do you take?

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lasirvent | @lasirvent | Apr 5, 2021
In reply to @bonn "May I ask how much Lactulose you take a day and when? I have a prescription..." + (show)
Profile picture for bonn @bonn

May I ask how much Lactulose you take a day and when? I have a prescription of it for my chronic constipation but so far all I get from it is bloating and gas. Perhaps there is a better way for me to take it than 1Tablespoon at bedtime?

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I take it during the day, I believe it has more time to work. Hope this helps.

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bonn | @bonn | Apr 4, 2021
In reply to @lasirvent "I’ve had chronic constipation for many years. I had a colonoscopy last November and my dr...." + (show)
Profile picture for lasirvent @lasirvent

I’ve had chronic constipation for many years. I had a colonoscopy last November and my dr. Told me I have a tortuous colon. I had surgery in Jan. 2020 and my surgeon said “ my only advice is to do whatever it takes not to be constipated bc if I do I’d end up back in the hospital. I have tried MiraLAX, Senacot, gummy fibers, magnesium, Amitiza, and Linzess.

The ONLY thing that works is called-Lactulose. It’s a syrup and I’ve been taking it for 4 months and it’s a miracle! Best wishes!

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May I ask how much Lactulose you take a day and when? I have a prescription of it for my chronic constipation but so far all I get from it is bloating and gas. Perhaps there is a better way for me to take it than 1Tablespoon at bedtime?

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1 reply
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judy75 | @judy75 | Apr 2, 2021
In reply to @lasirvent "I’ve had chronic constipation for many years. I had a colonoscopy last November and my dr...." + (show)
Profile picture for lasirvent @lasirvent

I’ve had chronic constipation for many years. I had a colonoscopy last November and my dr. Told me I have a tortuous colon. I had surgery in Jan. 2020 and my surgeon said “ my only advice is to do whatever it takes not to be constipated bc if I do I’d end up back in the hospital. I have tried MiraLAX, Senacot, gummy fibers, magnesium, Amitiza, and Linzess.

The ONLY thing that works is called-Lactulose. It’s a syrup and I’ve been taking it for 4 months and it’s a miracle! Best wishes!

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Thank you all for the information. I’ll have to talk to my Dr. about lactulose. My system is all over the place- last week I could hardly leave the house as going all the time and now I can’t go. And I worry about the constipation leading to another episode of diverticulitis. I just wish I had a friend who was a gastro Dr.

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