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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@ashweb901

Once back in September I paired daily miralax with daily fiber for 2-3 weeks and was able to shift to fiber only and it was gloriously successful for almost two weeks. Then the fiber starts to pile up inside and lose all its moisture by the time it gets to the "business end." Thanks for the suggestion.

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Does anyone have tortuous colon and bouts of diverticulitis? Found out about the tortuous colon in Jan when the GI Dr couldn’t get the scope all the way. I’ve had two bouts since late Oct and then got c-dif from the antibiotics in early March. I’ve lost about 30lbs since Oct. I worry about getting diverticulitis again. Some days I’m spending all day in the bathroom, but not diarrhea, just going a lot with firmed stool, other days nothing. Having internal hemorrhoids doesn’t help things out either, and neither does my chronic anxiety. I don’t know what to eat anymore. I don’t know if I should be eating cooked cauliflower or broccoli, or just stick with bland vegetables like green beans. Those of you who take miralax, do you take the full capful or maybe just a teaspoon? I know I have driven my GI Dr and his office staff nuts already. But it seems that every day a new problem pops up and my anxiety has me going over the deep end. Thankfully I see a psychiatrist off and on and he has prescribed Ativan to take as needed such as when my mind really starts to race.

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@judy75

Does anyone have tortuous colon and bouts of diverticulitis? Found out about the tortuous colon in Jan when the GI Dr couldn’t get the scope all the way. I’ve had two bouts since late Oct and then got c-dif from the antibiotics in early March. I’ve lost about 30lbs since Oct. I worry about getting diverticulitis again. Some days I’m spending all day in the bathroom, but not diarrhea, just going a lot with firmed stool, other days nothing. Having internal hemorrhoids doesn’t help things out either, and neither does my chronic anxiety. I don’t know what to eat anymore. I don’t know if I should be eating cooked cauliflower or broccoli, or just stick with bland vegetables like green beans. Those of you who take miralax, do you take the full capful or maybe just a teaspoon? I know I have driven my GI Dr and his office staff nuts already. But it seems that every day a new problem pops up and my anxiety has me going over the deep end. Thankfully I see a psychiatrist off and on and he has prescribed Ativan to take as needed such as when my mind really starts to race.

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I have severe constipation so full capfuls for me. I don't have diverticula notes on my colonoscopies nor diverticulitis (the irritation of said diverticula) but I know lots of people do. Be sure you are taking a good prebiotic (or eat fermented foods) and probiotic and figure out if there are specific foods that irritate you. The old popcorn and seeds avoidance advice is a myth. I'm sorry yours is flaring. I know lots of people drink fennel tea or ginger tea to soothe their gut, and there's a product called IBGard that is peppermint capsules to soothe the colon. It's really nothing harmful. Just pockets in your colon that can get inflamed.

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@judy75

Does anyone have tortuous colon and bouts of diverticulitis? Found out about the tortuous colon in Jan when the GI Dr couldn’t get the scope all the way. I’ve had two bouts since late Oct and then got c-dif from the antibiotics in early March. I’ve lost about 30lbs since Oct. I worry about getting diverticulitis again. Some days I’m spending all day in the bathroom, but not diarrhea, just going a lot with firmed stool, other days nothing. Having internal hemorrhoids doesn’t help things out either, and neither does my chronic anxiety. I don’t know what to eat anymore. I don’t know if I should be eating cooked cauliflower or broccoli, or just stick with bland vegetables like green beans. Those of you who take miralax, do you take the full capful or maybe just a teaspoon? I know I have driven my GI Dr and his office staff nuts already. But it seems that every day a new problem pops up and my anxiety has me going over the deep end. Thankfully I see a psychiatrist off and on and he has prescribed Ativan to take as needed such as when my mind really starts to race.

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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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@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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@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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@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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@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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@bonn

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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@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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@carcar

Is this the same condition as Diverticulitis?

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No, it’s not.

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