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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Profile picture for bborth @bborth

For me I became worse 24 hours post colonoscopy/endoscopy. Worse as in very plugged up/bloated, and pain upper R abdomen that then radiates into my lower back. Just feel more sickly when this happens, and basically cannot eat any solids. Am going in today for a blood draw to check enzyme levels (live/pancrease). The doc who did this procedure mentioned as you get older it is more common to have a redundant colon. So what to do about it now the question, I really don't care if this is more common as one ages (is that really true?), how I feel now at age 60 isn't acceptable for however many more years I have to live.

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I don’t believe it’s more common as you get older ! How does a colon suddenly grow longer 😳
No , I think we are born with a longer colon….
It’s just any issue seems to be more difficult to deal with as we get older… my opinion. Get well soon 👌😘

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Profile picture for bborth @bborth

I just had this and an endoscopy done earlier in the week as part of my ongoing GI issues post reux en y surgery late '19 for bile reflux/chronic nausea. Since my surgery things have slowly gotten worse with more chronic constipation/nausea/bloating periods. The doc who did this told me I have a longer colon than normal and this could be the reason behind my symptoms now. I last had a colonoscopy done back in '19 as well and there was no mention of this. Is this just a matter of interpretation? Of course I looked this up and it can lend itself to everything I am feeling. My concern is the bad days are nor equaling the decent days which was not the case until the past 6-7 months.

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Really sorry for the frustration you experienced on top of the $ to go through all that. I live about 90 minutes from Rochester where Mayo is of course so at least I have that in my favor. I have a prescription for Motegrity but have not started it yet, will wait until I get really bad again. I take Linzess as well, the 145 dosage instead of the 290 which is what I was originally given (couldn't be very far from a restroom on that dosage). The 145 amount seems to help along with lots of fluids, and some miralex. I have had some relief from a colonics session now and then which really purges me, but can only be done every few months I am told. I do have an appointment with a motility specialist at Mayo coming up in 6 weeks, hoping for some answers in regard of how to move forward and avoid as much distress as possible. Not expecting a magic bullet, but some help at least.

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Profile picture for les2024 @les2024

I just returned from the Mayo in MN and I have a redundant and torturous colon. My sigmoid is telescoping into my rectum . I have dysergenic defecation and a rectocele. My visit for 2 1/2 weeks was very stressful and disappointing. It is very expensive to go to the Mayo to have accommodations and to eat.
The GI had no comment really about the colon situation. He just recommended doing 3 enemas a week, which I don't think is the healthiest idea either. I left with Linzess and Trulance and I had already taken Linzess a year and it was making my bp high I figured out. I went through a lot of testing at the Mayo and they did more cardiac than GI tests. I have been suffering since HPylori and I spent two years going to GI specialists before I had adhesions removed that were creating a blockage and appendicitis. I am still not sleeping and having problems with defecation. I went to the Mayo hoping to get some help with Biofeedback and they didn't help me. I thought I would mention before you book your flight. The GI seemed hesitant about Motegrity due to side effects. Good luck!! I hope you get better. I am 52 so I agree about not wanting to suffer a long time.

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I'm sorry you didnt't get the help you were hoping for.
Many people with LARS (Low Anterior Resection Syndrom) do transanal irrigations daily (TAI) to have a good dump in the morning and be at peace the rest of the day.

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Profile picture for bborth @bborth

Having stool inside me despite doing the colon cleanse pre colonscopy was a surprise to the doc who did the procedure. They had to flush me out before they could do this. I was going all liquid for #2 6-7 hours before this and could not have imagined anything solid left in me. My next appointment is with a motility specialist here in Minneapolis, but my thinking is that I need to get a referral to Mayo since it is close, and their reputation in the GI sector. Perseverance is hard to keep up at times, but I have to see this through because as you said, I am too young to have to deal with this for another 15-20 years.

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I just returned from the Mayo in MN and I have a redundant and torturous colon. My sigmoid is telescoping into my rectum . I have dysergenic defecation and a rectocele. My visit for 2 1/2 weeks was very stressful and disappointing. It is very expensive to go to the Mayo to have accommodations and to eat.
The GI had no comment really about the colon situation. He just recommended doing 3 enemas a week, which I don't think is the healthiest idea either. I left with Linzess and Trulance and I had already taken Linzess a year and it was making my bp high I figured out. I went through a lot of testing at the Mayo and they did more cardiac than GI tests. I have been suffering since HPylori and I spent two years going to GI specialists before I had adhesions removed that were creating a blockage and appendicitis. I am still not sleeping and having problems with defecation. I went to the Mayo hoping to get some help with Biofeedback and they didn't help me. I thought I would mention before you book your flight. The GI seemed hesitant about Motegrity due to side effects. Good luck!! I hope you get better. I am 52 so I agree about not wanting to suffer a long time.

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Profile picture for verol65 @verol65

How did it go? Do you have a primary report?

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Yes. Everything went well. No polyps or issues. Just trying to get back to normal. Yesterday I felt like I had to go to the bathroom all day. Hope today is better .

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Profile picture for maria08827 @maria08827

Yes you’re right. That’s exactly what happened. Thanks for your reply!

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How did it go? Do you have a primary report?

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Profile picture for kamommy @kamommy

Do you have a redundant colon?
If so, your dr knows this and prescribed the best pre-colonoscopy clean out for you.
We have to trust something. Or call your dr’s office and ask this question.

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I do have a redundant colon. I also have a rectocele which came back. I had surgery 2 years ago for that but it’s back.

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Profile picture for verol65 @verol65

When everything flows out totally liquid and yellowish and then you stop needing to go, usually. At least that's how it's worked for me and it was what the doctors told me.

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Yes you’re right. That’s exactly what happened. Thanks for your reply!

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Profile picture for maria08827 @maria08827

I just finished the colonoscopy prep. I had to finish at midnight and I started at 4. How do you know if you’re cleaned out?

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When everything flows out totally liquid and yellowish and then you stop needing to go, usually. At least that's how it's worked for me and it was what the doctors told me.

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Profile picture for maria08827 @maria08827

I just finished the colonoscopy prep. I had to finish at midnight and I started at 4. How do you know if you’re cleaned out?

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Do you have a redundant colon?
If so, your dr knows this and prescribed the best pre-colonoscopy clean out for you.
We have to trust something. Or call your dr’s office and ask this question.

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