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 group.

@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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Am feeling a little embarrassed to discuss this. About 20 years ago I had an operation to remove piles. My dr told me that my large intestine is longer than it should be. I had covid twice and still suffer from the after effects. I have a funny feeling in my chest, swallowing all the time to get the knob down my throat. I have a light pain in my abdomen and am constipated all the time. It takes up to 10 days for my tummy to release itself. I'm insanely scared to go to the bathroom. I drink plenty of water, eat lots of fibre food, exercise and otherwise very healthy. I'm also scared for another operation to remove piles because its starting again. My dr is treating me for enxiety (37gr Venlor). Apparently it also help the muscles of the esophageal for the peristatal movement. I tried chewing bubble gum, flybogel capsules, drinking senna tea, lynseed, fruits, etc. I love my veggies. Nothing seems to work. I also have heartburn lately. Am tired to explain to my dr over and over. I feel that he doesn't belief me. I don't want an operation. Please advice me.

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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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Trish, I hope the biopsy went well today. Thinking of you.

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@colleenyoung

Trish, I hope the biopsy went well today. Thinking of you.

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@sallyw133 I had two biopsies and it HURT but now the aftereffects of pain and cramps. Should have results Friday or Monday. She said at least D&C if not cancer. The older I get , the more is falling apart!
Thank you for caring ❤️

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@trishh

@sallyw133 I had two biopsies and it HURT but now the aftereffects of pain and cramps. Should have results Friday or Monday. She said at least D&C if not cancer. The older I get , the more is falling apart!
Thank you for caring ❤️

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Hopeful they will be benign and only D&C.
I feel your pain, literally! I had eye surgery today and am lying in a hotel bed 6 hrs from home with an ice pack on my face! I’ve had a colonoscopy, my ovaries and tubes removed and now this now just this year. That doesn’t count all the drs apts, tests, ER visits, PT apts, oh I’ll just stop there. It truly sucks getting old!
Anyway, I hope you feel better tomorrow!

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@jen83jen

Am feeling a little embarrassed to discuss this. About 20 years ago I had an operation to remove piles. My dr told me that my large intestine is longer than it should be. I had covid twice and still suffer from the after effects. I have a funny feeling in my chest, swallowing all the time to get the knob down my throat. I have a light pain in my abdomen and am constipated all the time. It takes up to 10 days for my tummy to release itself. I'm insanely scared to go to the bathroom. I drink plenty of water, eat lots of fibre food, exercise and otherwise very healthy. I'm also scared for another operation to remove piles because its starting again. My dr is treating me for enxiety (37gr Venlor). Apparently it also help the muscles of the esophageal for the peristatal movement. I tried chewing bubble gum, flybogel capsules, drinking senna tea, lynseed, fruits, etc. I love my veggies. Nothing seems to work. I also have heartburn lately. Am tired to explain to my dr over and over. I feel that he doesn't belief me. I don't want an operation. Please advice me.

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Hi @jen83jen, nothing to be embarassed about here. I too have a twisting colon with extra length and deal with constipation, as do many other members. See this related discussion in the Digestive Health group and you'll soon see, you're not alone:
– Anyone else have a Redundant / Tortuous Colon? https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

Jen, I noticed that you posted your question in the Neuroendocrine Tumors (NETs) group. Do you also have NETs or carcinoid syndrome?

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@sallyw133

Hopeful they will be benign and only D&C.
I feel your pain, literally! I had eye surgery today and am lying in a hotel bed 6 hrs from home with an ice pack on my face! I’ve had a colonoscopy, my ovaries and tubes removed and now this now just this year. That doesn’t count all the drs apts, tests, ER visits, PT apts, oh I’ll just stop there. It truly sucks getting old!
Anyway, I hope you feel better tomorrow!

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It sure does, Sally AND expensive!
I'm new to this thread as recently found out tortuous colon has probably been the cause of decades of pain and obstipation and many misdiagnoses.
I hope you feel better soon. It's tough to be in pain when away from the comfort of your home.
All the best💞

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@annewithane

It sure does, Sally AND expensive!
I'm new to this thread as recently found out tortuous colon has probably been the cause of decades of pain and obstipation and many misdiagnoses.
I hope you feel better soon. It's tough to be in pain when away from the comfort of your home.
All the best💞

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Thank you! Much appreciated! My husband jokes that after 30 years of migraines and all other health issues, we could have bought a vacation home! 🙏🏼❤️

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@sallyw133

Hopeful they will be benign and only D&C.
I feel your pain, literally! I had eye surgery today and am lying in a hotel bed 6 hrs from home with an ice pack on my face! I’ve had a colonoscopy, my ovaries and tubes removed and now this now just this year. That doesn’t count all the drs apts, tests, ER visits, PT apts, oh I’ll just stop there. It truly sucks getting old!
Anyway, I hope you feel better tomorrow!

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@sallyw133 so sorry you're in pain too. Gentle hugs. Hope we sleep tonight 😴
I feel my inside, so strange!

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@sallyw133

Thank you! Much appreciated! My husband jokes that after 30 years of migraines and all other health issues, we could have bought a vacation home! 🙏🏼❤️

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He's probably right, Sally! Like your husband, my late hubby was so supportive and good humoured 😃 But it must be difficult to have a spouse with lots of health problems. My darling was so healthy he'd only ever had one episode of diarrhoea in his 67 years – it was a doozie episode though much to the delight of the family😂

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@skpsarah

I have had issues since I was in my early twenties (48 now). I went in many many times for help. I was told I had the flu, was too thin, maybe the edge of my liver was getting pinched? I was made to do an upper GI scope (never lower), HIDA scan, and obviously ultrasound. I was never diagnosed. I even had a two week period where I couldn't eat, was vomiting and could get no provider to listen to me. It wasn't until I went in for my first colonoscopy last month that my surgeon told me I had tortuous bowel. That explains EVERY intestinal issue I had. I wish more doctors considered this being a possible diagnosis and checked for it. Mine is bad enough, she could not complete my colonoscopy, so now I must go in for a CT colonoscopy. Still trying to figure out how to get my guts to work properly, but at least I have a direction to move now!

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I am astonished by the similarities and also see so many people posting on this thread that could be me as far as how they are coping, what they've experienced with doctors and honestly the need to be tenacious to get this diagnosis. I'm 48, also, just diagnosed with tortuous colon a couple weeks ago after 11 months of debilitating and devolving issues with my stomach, digestion, eating, sleep, joints, fatigue. I've also been dealing with this since my late teens and have been hospitalized a few times, blown off and told it was probably food poisoning, stress or a mystery (as in, I'm imagining it). I've spent the last 30 years doing everything I could to eat healthy, exercise, reduce stress. I think my biggest frustration now is that I've always wanted to find a way to heal rather than treat symptoms, but I don't know that's an option anymore. It's good to meet you, not because I'd wish this on anyone, but because it's good to find people who understand and can relate. I hope you get some resolution.

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@teebeck

I am astonished by the similarities and also see so many people posting on this thread that could be me as far as how they are coping, what they've experienced with doctors and honestly the need to be tenacious to get this diagnosis. I'm 48, also, just diagnosed with tortuous colon a couple weeks ago after 11 months of debilitating and devolving issues with my stomach, digestion, eating, sleep, joints, fatigue. I've also been dealing with this since my late teens and have been hospitalized a few times, blown off and told it was probably food poisoning, stress or a mystery (as in, I'm imagining it). I've spent the last 30 years doing everything I could to eat healthy, exercise, reduce stress. I think my biggest frustration now is that I've always wanted to find a way to heal rather than treat symptoms, but I don't know that's an option anymore. It's good to meet you, not because I'd wish this on anyone, but because it's good to find people who understand and can relate. I hope you get some resolution.

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@teebeck
I'm sorry for your struggles. I hear you.

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