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.

@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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I have an update! I had my 3rd colonoscopy attempt yesterday (not counting the failed barium enema) and I FINALLY had a Dr. who could see the whole thing! This time they did a double balloon colonoscopy at a hospital. And the only reason I have blood in the stool is because it is very tortuous and winds a lot. But it's all ok and I don't have to get another for ten years like a normal person! I have had to do the prep four times this year and I'm so done with it. But I am also so very grateful that there's nothing wrong with me.
Just to help anyone else out with the prep I do add a couple extra hours to the liquid diet and I also use 2 fleet enemas after I finish drinking the swamp water. It worked the last two times and it's very difficult for me to get cleaned out. I usually take magnesium chloride and miralax daily for constipation. My prayers and best wishes to all of you having issues with this!

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@kalbin

I have an update! I had my 3rd colonoscopy attempt yesterday (not counting the failed barium enema) and I FINALLY had a Dr. who could see the whole thing! This time they did a double balloon colonoscopy at a hospital. And the only reason I have blood in the stool is because it is very tortuous and winds a lot. But it's all ok and I don't have to get another for ten years like a normal person! I have had to do the prep four times this year and I'm so done with it. But I am also so very grateful that there's nothing wrong with me.
Just to help anyone else out with the prep I do add a couple extra hours to the liquid diet and I also use 2 fleet enemas after I finish drinking the swamp water. It worked the last two times and it's very difficult for me to get cleaned out. I usually take magnesium chloride and miralax daily for constipation. My prayers and best wishes to all of you having issues with this!

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Great news, kalbin😃 I'll have to google about the role of balloons in colonoscopy. I know having my first in a few weeks time is going to be very challenging and painful. I can't afford the costs of an anaesthetist & private hospital costs so will settle for sedation.
I had planned on starting the clean out earlier as I live out of town.

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Bummer! I just lost my post so will start again.
Do any of you have pix of you x-rays or other imaging of your tortuous colon that you'd like to share?
I posted mine on another thread today but will post them here also.
Screenshot of my tortuous colon via a Colonography I had in Sept 2015. The Report only stated a collapsed area in descending Colon.
And a screenshot of the plain x-ray taken on day 7 of the Bowel Transit Study, I had in June 2021. The wee circles you see are radiopaque markers which come in lots of 10 sealed in gel capsules and taken one capsule per day. The last capsule has 6 rectangle shaped markers – 66 radiopaque markers in total.
Normal diet & no laxatives during study. Only '1' tiny marker made it through the obstruction that is at my splenic flexure. For years I'd been repeatedly told by the head colorectal surgeon at my local hospital that I did not have an obstruction and did not fit the criteria to have a colonoscopy.
I've never stopped looking for answers and had some private consults with some womens health physio's and it was the head lecturer of the School of Physio whom after a number of examinations suggested in 2018 I did indeed have an obstruction in my descending colon.
It causes me much pain & problems as you can imagine.

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@annewithane

Great news, kalbin😃 I'll have to google about the role of balloons in colonoscopy. I know having my first in a few weeks time is going to be very challenging and painful. I can't afford the costs of an anaesthetist & private hospital costs so will settle for sedation.
I had planned on starting the clean out earlier as I live out of town.

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Best wishes on that! I totally understand about the cost--unfortunately I didn't know my insurance would not pay for anesthesia so I still owe for the first attempt. I probably should have opted out of it this time...it paid for everything else though. I have new insurance now so who knows what they are going to cover.
Good luck with everything!

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@annewithane

Bummer! I just lost my post so will start again.
Do any of you have pix of you x-rays or other imaging of your tortuous colon that you'd like to share?
I posted mine on another thread today but will post them here also.
Screenshot of my tortuous colon via a Colonography I had in Sept 2015. The Report only stated a collapsed area in descending Colon.
And a screenshot of the plain x-ray taken on day 7 of the Bowel Transit Study, I had in June 2021. The wee circles you see are radiopaque markers which come in lots of 10 sealed in gel capsules and taken one capsule per day. The last capsule has 6 rectangle shaped markers – 66 radiopaque markers in total.
Normal diet & no laxatives during study. Only '1' tiny marker made it through the obstruction that is at my splenic flexure. For years I'd been repeatedly told by the head colorectal surgeon at my local hospital that I did not have an obstruction and did not fit the criteria to have a colonoscopy.
I've never stopped looking for answers and had some private consults with some womens health physio's and it was the head lecturer of the School of Physio whom after a number of examinations suggested in 2018 I did indeed have an obstruction in my descending colon.
It causes me much pain & problems as you can imagine.

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It’s so nice to know that I am not the only one who has been passed off by the doctors. I had a botched surgery so the doctors afterwards would just give me the lame excuse that it was adhesions and that I have to live with the pain. Even at Duke, the same story. No one would note that my colon was tortuous. Attached is the colongraphy showing my torturous colon and was told that my rectus muscles were removed because of necrosis in my original surgery and this removed my support for my intestines. Why couldn’t the other doctors tell me this? Completely understand living with this pain, it is unbearable. Praying for each of you for God’s healing hand and peace and comfort. God bless

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@kalbin

Best wishes on that! I totally understand about the cost--unfortunately I didn't know my insurance would not pay for anesthesia so I still owe for the first attempt. I probably should have opted out of it this time...it paid for everything else though. I have new insurance now so who knows what they are going to cover.
Good luck with everything!

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Thanks, kalbin - I'm going to need all the best wishes I can get🥰 We have a public health system funded by our taxes, here in NZ but it's been broken for many years. Many of those that can afford health insurance (very expensive here) consult with specialists in private practices first then get onto the public system and operated on ahead of us lower income ppl.
I'm assuming you live in the US where everyone needs health insurance - finding a good deal must be a nightmare too! Again, thank you for the good wishes💞

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@riv2ga

It’s so nice to know that I am not the only one who has been passed off by the doctors. I had a botched surgery so the doctors afterwards would just give me the lame excuse that it was adhesions and that I have to live with the pain. Even at Duke, the same story. No one would note that my colon was tortuous. Attached is the colongraphy showing my torturous colon and was told that my rectus muscles were removed because of necrosis in my original surgery and this removed my support for my intestines. Why couldn’t the other doctors tell me this? Completely understand living with this pain, it is unbearable. Praying for each of you for God’s healing hand and peace and comfort. God bless

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Hi riv2ga, great to see your colonography pic thank you for sharing👍 but I am sorry you've been through so much too😢 I assume you have a stoma now? And the chronic, acute pain goes on?
Sounds like your Dr's/Surgeons cover each others arses too when the occasion arises 😩 In my last email to the Gastro Dr who will be doing my colonoscopy, I told him I require a written & pictorial record of everything he finds as I don't want my kids or Grandkids to have to produce pix of their 'Mothers' x-rays showing my tortuous colon & gnarly obstruction, to Dr's should they ever develop such bowel problems. I'm expecting to leave the clinic with a copy of the procedure on USB stick.
I have had chronic, very sharp pain in my vagina too since the bowel transit study. Being so blocked up must have created a shift in where a lot of the small loops sit in the lowest part of my abdomen - not even 10mls of morphine, and a full syringe of lidocaine applied internally, can ease it.
I know every little movement/bump whilst having the colonoscopy is going to be very, very painful so will ask my local clinic for a script of the strong numbing gel they use for men having a catheter put it.

Have any of you had such pain caused by your tortuous colon, in the vagina?
Again, thanks for sharing your colonography pix, riv💞
I so wish I'd found this website years ago. If anyone has a story of successful surgery could you please share💞

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@colleenyoung

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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Sorry, I made a mistake, am from old school. Am only struggling with strenuous intestine.

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@kanaazpereira

Welcome to Connect, @amyvb @jack222 and @lesliedenny. I’d like to invite @tracy430 @thull @bjs4984 @onaquest to this discussion as they might have more insights about your symptoms. You can read about their experiences with constipation in these discussions:

– Colon Resection for Diverticulitis and Chronic Constipation https://connect.mayoclinic.org/discussion/colon-resection-for-diverticulitis-and-chronic-constipation/
– chronic constipation https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

I also found this one published study about "The correlation between diverticulosis and redundant colon” which might interest you. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5635100/

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That is very interesting because I DO have both diverticuli and redundant tortuous colon. Always had severe constipation and gas as a young child; then dx with ‘spastic colon’ in early 20’s w right sided pain. Since my early 60s I’ve had alternating diarrhea and constipation (and gas) but age 66 added horrible cramping episodes and nausea. May of 2022 at Age 67 hospitalized then dx w tortuous and redundant colon, diverticuli present but real problem was dx as bacterial colitis. IV and po antibiotics supposedly cleared it however this past week I’ve had a terrible flare. Constipated x 2 days, took Colace for 3 days then finally had a BM. However I apparently had not fully emptied, as yesterday I had 6 or 7 small, loosely formed bm’s and nausea so immediately went to the BRAT diet Today I feel terrible and feel like something is vibrating or gurgling in there. Had one small bm this am. Should I have a SIBO test since I did have the reported bacterial colitis?? Should I take probiotics?? Should I take something for motility issues?? I couldn’t believe the amount of stool that has come out the past couple of days, especially yesterday. I’ve read and studied the low FODMAP diet plan but am not sure it’s right for me. Another issue that’s related is I sweat excessively and can easily become dehydrated if I’m not careful. So that sure doesn’t help the old colon. Anybody have suggestions as to what I should do, other than contact my doctor? I have an appt the end of October and doubt I could be seen any earlier. Thought about going to the ER but not sure I need to go to that extreme.

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