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

Interested in more discussions like this? Go to the Digestive Health Support Group.

So happy to find this group! I've been suffering pain, cramping, bloat, gas, constipation and diarrhea. In the past month I've had an abdominal CT and a colonoscopy (my 3rd due to family history of colon cancer) which were clear. The GI doctor told me I have a tortuous and redundant colon but has never linked my pain and issues to this condition. My brother (a physician) suggested the fodmap diet. I've also linked my recent issues to my lack of exercise. I previously worked out 4 times per week, but honestly, I haven't felt like it recently. I look forward to checking in with you as I start this journey.

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@bdebuys

So happy to find this group! I've been suffering pain, cramping, bloat, gas, constipation and diarrhea. In the past month I've had an abdominal CT and a colonoscopy (my 3rd due to family history of colon cancer) which were clear. The GI doctor told me I have a tortuous and redundant colon but has never linked my pain and issues to this condition. My brother (a physician) suggested the fodmap diet. I've also linked my recent issues to my lack of exercise. I previously worked out 4 times per week, but honestly, I haven't felt like it recently. I look forward to checking in with you as I start this journey.

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I have a gastroenterologist who is quite dismissive of my complaints of worsening constipation, bloating, cramping and a some weight loss (not huge, about 3lbs but I'm 105lb). CT colonography approx 3 years ago clear except for a non-serious polyp removed in a f/u sigmoidoscopy. Colonoscopy nine years ago showed long and twisty colon due to constipation. Abdominal ultrasounds from 2 years ago clear. Bloodwork normal. Gastro feels colonoscopy unnecessary. Recommends Lizness or Constella. or Resotran (prucalopride)as called in Canada.
My suspicion is its one of the three meds I'm on causing the decline of the preexisting IBS-C. Hope Dr. "I see no red flags" is right.
In the meantime, I have not started the Lizness but against advice and eventhough I know better, have moved from Miralax (which was making me worse in terms of bloating and cramping despite the commercials) to Senokot which for me causes less cramping and has been the best of a bad bunch. Not started the Lizness(lowest 72 dose) because I had bad experience 1 and half years ago with the higher dosage (the 140) .

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@scvkpete

On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and the procedure was somewhat difficult. At age 50, my first colonoscopy showed my colon completely normal. I don't know why the change, although I did have 3 surgeries in a short period of time. I have increased gas and have small (rabbit-like) BMs each time I void. I also have normal bowel movements. Anyone had anything like this happen to them?

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Hi. I have the same problem, in 2012 at 58 years old. I had a colonoscopy for having belly pain, the colonoscopy was normal without problems, now in March I had the second one, it was so painful that I promised never to get one again, if I do not have general anesthesia, and the diagnosis was
was that l have Tortuous Colon, the doctor's they do not know why, nor I, and they do not agree, my family doctor tells me to eat normal but with more fibers, and try not to be constipated, it is dangerous.
The Gastroenterologist Dr. tells me "or that is nothing, you have a nervous colon, relax and take medicine for depression, this will help you"
I started my medication two weeks ago, I do not know what happened, but it really, really depressing that nobody can help you, I take Metamusil every day, I will tell you how I feel, in a month. I hope you are better, and maybe this will help you, take care of yourself.

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@scvkpete

On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and the procedure was somewhat difficult. At age 50, my first colonoscopy showed my colon completely normal. I don't know why the change, although I did have 3 surgeries in a short period of time. I have increased gas and have small (rabbit-like) BMs each time I void. I also have normal bowel movements. Anyone had anything like this happen to them?

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Similar situation here -- had 1st colonoscopy at about 55 and just had second one at 70. Nothing deemed "wrong" either time except that now, at 70, I was told I have a redundant or tortuous colon. Who knew? I thought this was a congenital and rare condition, not something somehow acquired over the years. Interesting that you, too, seem to have 'acquired' the tortuous colon. What is going on?

My problem is that suddenly, months ago, I started having constipation, like I had as a youngster, so I had the 2nd colonoscopy to see if there was a problem. But, like you, I can have 'normal' BMs too. Trouble is, I get "backed up" and then have the opposite problem: huge loose BMs accompanied by loads of lower region cramping/pain. Not fun.

I don't remember this happening since those episodes of more than 35 years ago. I'm seeing the GI doc this week but I'm sure he will say it's IBS and throw Miralax packets at me. I also have GERD so feel like I've got double-trouble.

Oh, and my gall bladder was removed in '04 due to horrible pain attacks and 'sludge,' not stones, but I never got the post-cholecystectomy 'dumping' (frequent diarrhea) syndrome that so many experience after that surgery. I have heard that many years later problems crop up for some people for the first time. Perhaps I'm one of those people and will now be plagued with this into old age.

Hope you are feeling better and have gotten some answers to your own questions.

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@scvkpete

On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and the procedure was somewhat difficult. At age 50, my first colonoscopy showed my colon completely normal. I don't know why the change, although I did have 3 surgeries in a short period of time. I have increased gas and have small (rabbit-like) BMs each time I void. I also have normal bowel movements. Anyone had anything like this happen to them?

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I have had the same issues, and also had my gall bladder removed. I have been wondering if the cause of my redundant colon was gall bladder removal. The dripping of bile acid from the liver, and/or the use of cholestyramine to control the negative effects of the bile acid maybe caused the tissue in the colon to change?

My doc also put me on anti-anxiety meds (amitriptyline) and it has helped calm things down, so I have less cramping and diarrhea. I also take dicyclomine which helps with cramps.

Another respondent below discussed the Deloyers procedure to remove part of the colon, and apparently it helped. I saw a video on TV about a young patient with severe diverticulosis that prevented him from growing. So the doctors did a complicated procedure of remove a lot of individual pouches of inflammation and it cured him. I don't think Deloyers is for me, but the other surgery might be the solution. I'm going to look into it further.

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@courtneyt

Similar situation here -- had 1st colonoscopy at about 55 and just had second one at 70. Nothing deemed "wrong" either time except that now, at 70, I was told I have a redundant or tortuous colon. Who knew? I thought this was a congenital and rare condition, not something somehow acquired over the years. Interesting that you, too, seem to have 'acquired' the tortuous colon. What is going on?

My problem is that suddenly, months ago, I started having constipation, like I had as a youngster, so I had the 2nd colonoscopy to see if there was a problem. But, like you, I can have 'normal' BMs too. Trouble is, I get "backed up" and then have the opposite problem: huge loose BMs accompanied by loads of lower region cramping/pain. Not fun.

I don't remember this happening since those episodes of more than 35 years ago. I'm seeing the GI doc this week but I'm sure he will say it's IBS and throw Miralax packets at me. I also have GERD so feel like I've got double-trouble.

Oh, and my gall bladder was removed in '04 due to horrible pain attacks and 'sludge,' not stones, but I never got the post-cholecystectomy 'dumping' (frequent diarrhea) syndrome that so many experience after that surgery. I have heard that many years later problems crop up for some people for the first time. Perhaps I'm one of those people and will now be plagued with this into old age.

Hope you are feeling better and have gotten some answers to your own questions.

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Thank you for your response, it is a pity that we can not have a correct answer to our questions, the doctors tell you, get used to this new life, nothing can be done, nobody has told me about the operation of removing part of the colon, if the pain continues, or I have to take pills to control the colon maybe this is the only solution to take, although I panic to enter another operation, and the preparation for it.
Thanks for talking about this problem, it helps me a lot.
Hope you are better. Take care.

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@courtneyt

Similar situation here -- had 1st colonoscopy at about 55 and just had second one at 70. Nothing deemed "wrong" either time except that now, at 70, I was told I have a redundant or tortuous colon. Who knew? I thought this was a congenital and rare condition, not something somehow acquired over the years. Interesting that you, too, seem to have 'acquired' the tortuous colon. What is going on?

My problem is that suddenly, months ago, I started having constipation, like I had as a youngster, so I had the 2nd colonoscopy to see if there was a problem. But, like you, I can have 'normal' BMs too. Trouble is, I get "backed up" and then have the opposite problem: huge loose BMs accompanied by loads of lower region cramping/pain. Not fun.

I don't remember this happening since those episodes of more than 35 years ago. I'm seeing the GI doc this week but I'm sure he will say it's IBS and throw Miralax packets at me. I also have GERD so feel like I've got double-trouble.

Oh, and my gall bladder was removed in '04 due to horrible pain attacks and 'sludge,' not stones, but I never got the post-cholecystectomy 'dumping' (frequent diarrhea) syndrome that so many experience after that surgery. I have heard that many years later problems crop up for some people for the first time. Perhaps I'm one of those people and will now be plagued with this into old age.

Hope you are feeling better and have gotten some answers to your own questions.

Jump to this post

Thank you for your answer, I see that I am not the only one, with this problem, now I have a question that turns me in the head, again and again, the pains that I had in the belly, were from the gallbladder, I had the urgency to remove my gallbladder, or the pain is from the colon not from the gallbladder only, well, now it is too late to turn this question around, but we are at the mercy of the doctors without having concrete answers, I take note of your medications and I will consult with my family doctor, but my life has changed completely, I am not happy and I am depressed, I hope the medicines help me even though I am not a fan of them.
Thanks and take care.

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On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and the procedure was somewhat difficult. At age 50, my first colonoscopy showed my colon completely normal. I don't know why the change, although I did have 3 surgeries in a short period of time. I have increased gas and have small (rabbit-like) BMs each time I void. I also have normal bowel movements. Anyone had anything like this happen to them?

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These days I find that I get more Colon Pain after passing stool any thoughts

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Hi @lotsofpain,

You may notice that I moved your message to this "Redundant / Tortuous Colon” discussion as many of the members have posted about pain in the colon;
I thought it would be beneficial for you to connect with them and read about their experiences.
Could you share more details? Have you been diagnosed with any digestive conditions?

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