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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@sallyw133

I go on Friday. Will let you know what I find out.

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Did you find the name of the technique for colon massage, or as you described earlier, a “pulling” action?

So far (for a week) the colon massage I learned from the pelvic floor therapist; right to left across the colon area (high on stomach) and then down on the left side (the descending colon?) done at night in bed and again in the morning before getting up, has stabilized my explosive diarrhea for the most part. I’m almost afraid to say it because it could change so quickly and come back at any moment 😉

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@kayburnett

Did you find the name of the technique for colon massage, or as you described earlier, a “pulling” action?

So far (for a week) the colon massage I learned from the pelvic floor therapist; right to left across the colon area (high on stomach) and then down on the left side (the descending colon?) done at night in bed and again in the morning before getting up, has stabilized my explosive diarrhea for the most part. I’m almost afraid to say it because it could change so quickly and come back at any moment 😉

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Oh shoot. We got talking about so many other things I forgot to ask. I will call her Monday and ask.

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@anne4u

I had a colonoscopy 2 days ago and after 2 months of not having a bm without softeners and Lactulose, I was diagnosed with tortuous colon. I ended up at the emergency department March 6th after 11 days with out going. Started on Lactulose and softeners then. I’ve had IBS for years but have been pretty regular prior to this starting. I knew something changed because a cup of coffee in the morning usually did it for me. I’ve been drinking 3 17oz bottles of water a day along with other fluids and I’ve been careful about what and how much I eat. I was also diagnosed with internal and external hemorrhoids and angioectasia in distal descending colon. I know hemorrhoids are common and they were found in a previous colonoscopy. I’ve been reading here about what others are doing and have read about tortuous colon online. It’s good to have others to help understand this diagnosis!

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Just saw a gi for my hemorrhoids this week. Wants to band them. I guess an unfortunate consequence of the constipation from slow transit and tortuous colon. Sooo sick of all this and drs sticking stuff up my butt!

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@sallyw133

Just saw a gi for my hemorrhoids this week. Wants to band them. I guess an unfortunate consequence of the constipation from slow transit and tortuous colon. Sooo sick of all this and drs sticking stuff up my butt!

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You made me laugh so thanks for that! I totally agree! About 6 years ago my Dr found polyps so I went to colonoscopies every other year. None found this time! Yeah! Back to every 5 years! I read about banding hemorrhoids online. Definitely a pain in the ass! How successful did your Dr say that procedure is? My gastroenterologist didn’t seem to think mine are serious right now, or at least he didn’t say anything except ‘see you in 5 years’. I know I’ve had them a long time. How about you?

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@anne4u

You made me laugh so thanks for that! I totally agree! About 6 years ago my Dr found polyps so I went to colonoscopies every other year. None found this time! Yeah! Back to every 5 years! I read about banding hemorrhoids online. Definitely a pain in the ass! How successful did your Dr say that procedure is? My gastroenterologist didn’t seem to think mine are serious right now, or at least he didn’t say anything except ‘see you in 5 years’. I know I’ve had them a long time. How about you?

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I’ve had them since my 20’s, worse after kids. Now 64. Always constipated. Usually just flared after bout of IBS. Last fall out of nowhere, burning pain. GI doesn’t know. Colo-rectal surgeon says protalgia fugax. Then, pelvic floor dysfunction. So when I say people having their hands in places, believe me, you have no idea! So did the therapy for months. Sorry this is so long. During all this excruciating abdominal pain. And cyst on ovary but other side. 6 trips to ER, colonoscopies in Dec and Feb, ovaries and tubes out in Feb. colonoscopy showed the severely tortuous colon reason for pain. Burning had improved but back after surgery. Saw a colo-rectal/PF spec who said tense muscles back do more therapy. But I went and saw gi who said 3 internal hemorrhoids which could be banded. 99% success rate. PF therapist doesn’t think that is my problem but also doesn’t think PF could be causing it either. So I’m ready to literally tear my hair out! Have this burning all the time. Sorry, for ranting.

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I just had my redundant colon removed, thinking it would solve my STC but did nothing. I'm still having to take Miralax, and stool softeners multiple times daily. Now I'm being referred to a pelvic floor therapist with the idea of a hypertonic pelvic floor.
I'm so irritated!
Hopefully, you find relief!

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@sallyw133

Oh shoot. We got talking about so many other things I forgot to ask. I will call her Monday and ask.

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Visceral mobilization. She said you can’t do it to yourself. It’s a procedure done by a trained PFT. But I looked it up on U-tube and there are some videos. What can it hurt? I tried it and it did get some gas out!

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@sallyw133

I’ve had them since my 20’s, worse after kids. Now 64. Always constipated. Usually just flared after bout of IBS. Last fall out of nowhere, burning pain. GI doesn’t know. Colo-rectal surgeon says protalgia fugax. Then, pelvic floor dysfunction. So when I say people having their hands in places, believe me, you have no idea! So did the therapy for months. Sorry this is so long. During all this excruciating abdominal pain. And cyst on ovary but other side. 6 trips to ER, colonoscopies in Dec and Feb, ovaries and tubes out in Feb. colonoscopy showed the severely tortuous colon reason for pain. Burning had improved but back after surgery. Saw a colo-rectal/PF spec who said tense muscles back do more therapy. But I went and saw gi who said 3 internal hemorrhoids which could be banded. 99% success rate. PF therapist doesn’t think that is my problem but also doesn’t think PF could be causing it either. So I’m ready to literally tear my hair out! Have this burning all the time. Sorry, for ranting.

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Hey, rant away! That’s why we’re here. Where else can we share and vent where others understand? Read some of my posts if you think yours is long!
I started dealing with chronic pain, fatigue, IBS, and other symptoms of fibromyalgia in 2003. I’m 63 now and these other diagnoses certainly don’t make life easier. I’ve learned and used a lot of mind-body techniques to aid in pain relief and other symptoms from diagnoses. I’m not sure if you’re into that type of stuff, but it can be helpful. It got so difficult for me, living in constant pain and fatigue that I had to find ways to distract myself. It something that has helped me cope. Let me know how your doing and if you proceed with banding!

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@sickofbeinsick1

Gee Sallyw133….you don’t happen to live in TX do you?…. I’m being sarcastic cuz that’s about what I’d expect from 1 or 2 of my (past) Drs.
However, I don’t think I’ll be having another colon-scope for a while…I’ve had 5 or 6 already…..still not fun

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Haha. No I live in PA but my dr is at Cleveland Clinic. I see a new, female motility specialist in June there. So hoping she us going to be better than him!

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@anne4u

Hey, rant away! That’s why we’re here. Where else can we share and vent where others understand? Read some of my posts if you think yours is long!
I started dealing with chronic pain, fatigue, IBS, and other symptoms of fibromyalgia in 2003. I’m 63 now and these other diagnoses certainly don’t make life easier. I’ve learned and used a lot of mind-body techniques to aid in pain relief and other symptoms from diagnoses. I’m not sure if you’re into that type of stuff, but it can be helpful. It got so difficult for me, living in constant pain and fatigue that I had to find ways to distract myself. It something that has helped me cope. Let me know how your doing and if you proceed with banding!

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I’m into anything that will help! I started meditation with the Balance app about 6 weeks ago. It really helps. I’m also talking to a psychologist who specializes in chronic pain. Can’t judge yet if she’s worth it. Also numerous health issues. Seeing a pulmonologist Wednesday for results of lung C/T. Never ending.

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