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.

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!

REPLY
@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?

Jump to this post

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.

REPLY
@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!

Jump to this post

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?

REPLY
@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!

Jump to this post

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!

REPLY
@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 😉

Jump to this post

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

REPLY
@sallyw133

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

Jump to this post

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 😉

REPLY

My gi doctor follow up to diagnosis gave me a chart to follow for constipation as follows: morning, probiotic, followed by a liter of water to drink before lunch, after lunch Metamucil, followed by a liter of water to drink by bed time, at dinner time take miralax, at bedtime take magnesium 200 to 500 mg. I found that timing has a lot to do with this and this works for me. I usually follow this for 4 days then discontinue miralax part for a couple of days. You have to play around until you find your colons rhythm. And stress will affect everything so keep that in check with meditation, exercise, yoga etc. keep us posted . Good luck.

REPLY
@sallyw133

Just went through this and you would think my dr who is a motility specialist would have known better. Had me do a 3-day low residue diet which is basically high-carb no-fiber prior. What it did was totally constipate me so I was behind going into the prep. Did the jug of Golytely. Thought I was good. Nope. Couldn’t get all the way in. Told me my colon was like a roller coaster. Next time, no low-residue, two-day prep. More Golytely. So talk to your doc about this Before!

Jump to this post

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

REPLY

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!

REPLY
@tll5

I know I'm late to the game here, I just found this site. As I'm reading through these posts I'm lying flat on my back in bed, dying, my pain is so horrendous. This is a three-day stint which is not unusual. Sitting is always uncomfortable for me . When I drive my seat is leaned way back. Wearing jeans or, anything around my waist will eventually lead to Pain by the end of the day. Bending over forwards, nope! I am otherwise a healthy, very active , mother of five , ages 40 to 22 years old, grandmother of five! 59 years old and for my whole life of emergency room visits for abdominal pain, I was never diagnosed until last year with a redundant intestine. This, was after I went to the emergency room and was hospitalized immediately. Nothing they gave me for pain helped. They say, narcotics do not e a s e the pain for this condition. Of course, the doctor recommended a colonoscopy but, he said, you just had one last year and it was inconclusive because they said that you were not cleaned out enough. I promised him that I did everything exactly how I was supposed to do on my last colonoscopy. He suggested, that I did two cleanings right in a row! I had to agree with him, I needed to find out what was going on with my stomach! I will say this without sounding disgusting, I could not believe how much waste was in my stomach!! Two nights in a row! Psychologically, if you suffer this pain and discomfort, and bloating, it can wear on you. Really, wear on you. I have found that being grateful for the littlest of things in my life, the beauty of nature, trying to stay in touch with my grandchildren via FaceTime , it's hard to put on a happy face with them when I'm having an episode. Currently, I have no insurance. I live in Florida. The doctor in the hospital recommended I follow up with the doctor who did they colonoscopy so I called the office to set up an appointment, I knew I would be paying cash I figured probably in the hundred dollar area. The woman was very Curt when she let me know that the initial visit fee was $275 no it's ands or buts about it, no payment plan no nothing. So, my life continues with my general practitioner trying to figure things out. My general practitioner, I might add, is a different doctor every time I go there so, there is no relationship building, no ongoing, effective, communication. I have to tell my story over, and over, and over again. One of the doctors who, I happened to see many times, and once after I was hospitalized with a severe attack, said the first colonoscopy was inconclusive. He was thoroughly convinced that my whole problem was constipation nothing more. I stood my ground, I know my body, I told him there is something in there that is not right. Wow, I know I've rambled, nobody understands what I'm going through or the severity of the pain and how it just overwhelms your whole mind and being. This too shall pass. I am, on my good days, a very upbeat, happy, funny, loving human being. I feel very alone in this struggle... I just want this never-ending pain to leave me. Well, if you took the time to read this far, thank you!

Jump to this post

I know EXACTLY what you’re going through, I’ve been putting up w/ it for 7 (at least) years.!
I actually saw a new GI, because I had a 4 day episode a couple weeks ago (I thought they were over). On my 1st. visit, I brought some records of previous procedures ….he thumbed thru them, said “there’s nothing else I can do”) gave me amitriptyline & said come back in a month.
This is not my 1st rodeo.
I can’t remember when exactly I was diagnosed with “long, redundant tortuous colon”, but I guess it never goes away…
😩

REPLY
Please sign in or register to post a reply.