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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Omg, all my life. I really suffered as a child and had serious episodes of constipation throughout life. My colonoscopy a few years ago was torture--so painful they could not knock me out--and I have my second one coming up soon. It takes way more than the usual time frame for me to even get prepped too. Definitely gonna talk to GI beforehand. I read "Colowrap" can help but personally I want deeper sedation. Short of surgery, I do not know what helps. I eat lots of veggies, no meat or dairy, try to stay hydrated (that's the hard part!). Knee and hip replacements in last couple years seems to have made things worse. Maybe gut biome related? I take Akkermensia and other recommended.probiotics and extra fiber. Stil feels pretty hopeless.

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I had pre cancer polyps removed 5 years ago and was told I had a redundant colon and could never have surgery. I was still under sedation effects and was thinking later what did he mean? No surgery on colon? Or tummy?
Anyone have surgery, ie. Hysterectomy, with redundant colon and do OK? I just found out I may need surgery for uterine cancer and fear the redundant affects of colon. Anyone?

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@trishh

I had pre cancer polyps removed 5 years ago and was told I had a redundant colon and could never have surgery. I was still under sedation effects and was thinking later what did he mean? No surgery on colon? Or tummy?
Anyone have surgery, ie. Hysterectomy, with redundant colon and do OK? I just found out I may need surgery for uterine cancer and fear the redundant affects of colon. Anyone?

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Hi Trish, I moved your message here to this discussion:
- Anyone else have a Redundant / Tortuous Colon? https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

I did this so you can connect easily with other members talking about redundant colon.

You have a very unique question. I can't imagine that you cannot have surgery because you have a redundant colon. In fact, surgery is a treatment option for people with redundant colon who have complications due to their twisted colon. Most people do not have complications and aren't even aware that they have an abnormally long colon that has extra twists and loops.

I would definitely tell your oncology surgeon about your redundant colon and ask if that will have any impact on your surgery for uterine cancer or for recovery.

Are you able to contact the GI surgeon who did the colonoscopy to find out what was meant?

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@colleenyoung

Hi Trish, I moved your message here to this discussion:
- Anyone else have a Redundant / Tortuous Colon? https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

I did this so you can connect easily with other members talking about redundant colon.

You have a very unique question. I can't imagine that you cannot have surgery because you have a redundant colon. In fact, surgery is a treatment option for people with redundant colon who have complications due to their twisted colon. Most people do not have complications and aren't even aware that they have an abnormally long colon that has extra twists and loops.

I would definitely tell your oncology surgeon about your redundant colon and ask if that will have any impact on your surgery for uterine cancer or for recovery.

Are you able to contact the GI surgeon who did the colonoscopy to find out what was meant?

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@colleenyoung
Thanks for the quick response. The GI physician was from another hospital filling in. My GI doctor was retiring. So I guess I will have to talk to oncologist as I have such bad redundant colon. Takes lot to get me regular and not back up. I have bloating but not sure if fat, colon, or cancer?
Feeling scared and in shock as this caught me totally off guard. Thank you Colleen.

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@trishh

I had pre cancer polyps removed 5 years ago and was told I had a redundant colon and could never have surgery. I was still under sedation effects and was thinking later what did he mean? No surgery on colon? Or tummy?
Anyone have surgery, ie. Hysterectomy, with redundant colon and do OK? I just found out I may need surgery for uterine cancer and fear the redundant affects of colon. Anyone?

Jump to this post

I know this isn’t exactly the same, but.. my gi did a colonoscopy because he wanted to see how redundant my colon was and to do biopsies of my terminal ileum to rule out IBD. He was unable to get all the way there bc the prep wasn’t complete(despite my best efforts!). He did, however, learn that my colon is “like a roller coaster”. I was scheduled for surgery the following week to have my ovaries and tubes removed with a possible full open hysterectomy depending on biopsy results of the cyst on my ovary during surgery. So he called my surgeon and asked if she could look at the area while in there. She already planned to
Do an exploratory to look for a reason for my abdominal pain. So she actually took pictures for him. I didn’t have cancer so only the tubes and ovaries needed to come out, but she also confirmed the extreme tortuous colon. It in no way would have impeded, at least in my case, her ability to do the hysterectomy had it been needed. Not sure if this answers your question fully but hope it helps some.

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@sallyw133

I know this isn’t exactly the same, but.. my gi did a colonoscopy because he wanted to see how redundant my colon was and to do biopsies of my terminal ileum to rule out IBD. He was unable to get all the way there bc the prep wasn’t complete(despite my best efforts!). He did, however, learn that my colon is “like a roller coaster”. I was scheduled for surgery the following week to have my ovaries and tubes removed with a possible full open hysterectomy depending on biopsy results of the cyst on my ovary during surgery. So he called my surgeon and asked if she could look at the area while in there. She already planned to
Do an exploratory to look for a reason for my abdominal pain. So she actually took pictures for him. I didn’t have cancer so only the tubes and ovaries needed to come out, but she also confirmed the extreme tortuous colon. It in no way would have impeded, at least in my case, her ability to do the hysterectomy had it been needed. Not sure if this answers your question fully but hope it helps some.

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I had a complete hysterectomy five years after surgery for my twisted and redundant colon. This was back in 1989, so there was no laproscopic surgery then. For the hysterectomy, they cut me open through the same incision used to "untwist" my colon. Everything went fine, including recovery. However, as with any surgery, I did develop adhesions from both the surgeries, which now complicates the loopy colon and constipation. I take Linzess for that now. Best of luck to you!

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@sallyw133

I know this isn’t exactly the same, but.. my gi did a colonoscopy because he wanted to see how redundant my colon was and to do biopsies of my terminal ileum to rule out IBD. He was unable to get all the way there bc the prep wasn’t complete(despite my best efforts!). He did, however, learn that my colon is “like a roller coaster”. I was scheduled for surgery the following week to have my ovaries and tubes removed with a possible full open hysterectomy depending on biopsy results of the cyst on my ovary during surgery. So he called my surgeon and asked if she could look at the area while in there. She already planned to
Do an exploratory to look for a reason for my abdominal pain. So she actually took pictures for him. I didn’t have cancer so only the tubes and ovaries needed to come out, but she also confirmed the extreme tortuous colon. It in no way would have impeded, at least in my case, her ability to do the hysterectomy had it been needed. Not sure if this answers your question fully but hope it helps some.

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@sallyw133 thank you, it does help. I guess I am scared of what anesthesia and if needed abdominal surgery will do to my bowel habits. I think I will ask if they can tell if surgery, my colon is bloated or if it's cancer or just fat.
Hope and pray they can get this done soon after biopsy this Tuesday. Having lot of tummy pain.
Thank you.... 😊

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For what it is worth, the gi who did my colonoscopy in 2018 laughingly told me I had a very tortuous colon, but nothing about the probable effect or cause. I wasn't laughing. There was no further contact and I struggled with obstipation before taking time to research my condition online.
A recent consult with a young Asian woman gi told me that the two dimensional illustrations of ascending, transverse, descending colons and the final rectum exit didn't reflect reality "for anyone because we all have twisty colons." Maybe this reflects on her youth and inexperience, or the result in the US of our standard American diet (SAD) that lacks much fiber, and causes straining to have a bm that stretches the colon out.
That said, my obstipation was reduced when I increased my magnesium, added a stool softener and had 1 T of soluble acacia fiber in the morning. with plenty of water. The rest of my diet is high in insoluble fiber.
I think colonoscopy prep frequently fails due to the tortuous turns that make a bm difficult resulting in incomplete evacuation. I've read that using a smaller scope makes a colonoscopy easier for the gi and less painful for the patient. Other's opinions?

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@trishh

@sallyw133 thank you, it does help. I guess I am scared of what anesthesia and if needed abdominal surgery will do to my bowel habits. I think I will ask if they can tell if surgery, my colon is bloated or if it's cancer or just fat.
Hope and pray they can get this done soon after biopsy this Tuesday. Having lot of tummy pain.
Thank you.... 😊

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Anesthesia and especially pain meds always tend to make me constipated. I try to use as little for pain as I can, esp the opiates. But don’t suffer. They can always give you something to get things moving. Good luck! I hope it all works out well for you.

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@sallyw133

Anesthesia and especially pain meds always tend to make me constipated. I try to use as little for pain as I can, esp the opiates. But don’t suffer. They can always give you something to get things moving. Good luck! I hope it all works out well for you.

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@sallyw133 thank you. 😊. I guess my greatest fear is the tortuous colon getting kinked. The GI who did my last colonoscopy said no surgery and left the room. I know it will get taken care of but he scared me. Feeling very nauseous this morning. Always something 🙄
Thank you for your encouragement, very much appreciated. Have a great day!

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