1. < Digestive Health

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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kalbin | @kalbin | Sep 25, 2022
In reply to @annewithane "Thanks, kalbin - I'm going to need all the best wishes I can get🥰 We have..." + (show)
@annewithane

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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Insurance in the US is also a mess, yes, but I've been blessed to have found a teaching job with totally free insurance which is very rare here. I'm just not sure how much it will cover. But again best wishes with everything and thank you for your message!!! Keep us posted.

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mbray1972 | @mbray1972 | Sep 26, 2022

Hi I just wanted to let you know that you are not alone. After having C-diff for 5 months before I requested a stool test from my PCP I was rightfully diagnosed with C-diff. My then PCP put me on flagyl for 7 days. It didn't work and I continued with C-diff until I seen a gastroenterologist and he gave me Vancomycin. Low dose for 21 days and finally came back negative. However, I still have boughts of diarrhea, anxiety, intestinal pain and embarrassment to be intimate with my husband do to anal leakage. I recently after waiting months to get a colonoscopy was diagnosed with a redundant and torturous colon. I have had colonoscopys before and never diagnosed with this.
I feel so angry that my PCP of almost 6 years didn't diagnose me or request a stool test before my request. I called left many messages how horrible my diarrhea was and also emailed them through the portal. Many none response to both and or blamed on COVID-19. My mother actually died from C-diff in 2016. Her intestines burst and since she was 81 they said there was nothing they could do. I have been so scared this is going to happen to me. My anxiety is through the roof and I have to know where the bathrooms are when I finally leave my house. I have to take Pepto bismuth when I have appointments just to be able to leave my house.
I don't know if this why you have your diagnosis but I believe having the C-diff for 6 months is the current reason for my new diagnosis of redundant and torturous colon.
It's horrible that doctors these days don't know how to treat, or they blame everything on COVID-19. We shouldn't have to live in fear of recurring illnesses. My gastroenterologist said I should take metamucil every day and high fiber diet to assist with my bowels. I'm so sorry that we have to deal with this. I will pray for you all.

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anniez | @anniez | Sep 26, 2022

Yes, I have it. Years ago surgery at 28 for exploratory lap. Had history exposure to chemicals in research lab. Saw this diagnosis on my CT colonography scan in 2017 after my new GI doc couldn’t get a regular or pediatric scope in. I’m in my 70s. I’m careful about food choices as I also have diverticuli. A damaged ileocecal valve from previous colonoscopy also makes things challenging. I would recommend the Monash university app as it is best I’ve found so far. It is often the quantity of certain things eaten. A strict fodmap diet can cause nutrition problems over a long haul. It is not free app, about $8. I’m retired NP and diabetes educator. I’ve seen the wide swings in dietary advice. It can be confusing. Different health care providers don’t always have good background in nutrition. Moderation in all things. Good luck.

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1 reply
anniez | @anniez | Sep 26, 2022
In reply to @pamp54 "That is very interesting because I DO have both diverticuli and redundant tortuous colon. Always had..." + (show)
@pamp54

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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My SIBO breath test was negative but the two week treatment with Rifaxin was like a miracle. Best I had felt in 15 years. A course of levoquin after picking up a bug in Egypt 15 years ago made everything worse. Rifaxin effect only lasted 4 months but not as bad as previously. I avoid probiotics. Yogurt sparingly, carrots work the best of any vegetables so I eat them raw. Family members can’t understand. To them it’s just another organ recital.

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sallyw133 | @sallyw133 | Sep 27, 2022
In reply to @trishh "@sallyw133 so sorry you're in pain too. Gentle hugs. Hope we sleep tonight 😴 I feel..." + (show)
@trishh

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

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I have that, too. I believe it’s called visceral hypersensitivity. I believe all of my issues started with my migraines. Either the pain itself or the numerous medications over the past 30 years. Now it seems like every week it’s another thing I have wrong with me. My poor husband it about ready to lose his mind. Had hopes of doing all this traveling once he retired. We do travel. But to doctors apts! Not quite the same.

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1 reply
trishh | @trishh | Sep 27, 2022
In reply to @sallyw133 "I have that, too. I believe it’s called visceral hypersensitivity. I believe all of my issues..." + (show)
@sallyw133

I have that, too. I believe it’s called visceral hypersensitivity. I believe all of my issues started with my migraines. Either the pain itself or the numerous medications over the past 30 years. Now it seems like every week it’s another thing I have wrong with me. My poor husband it about ready to lose his mind. Had hopes of doing all this traveling once he retired. We do travel. But to doctors apts! Not quite the same.

Jump to this post

@sallyw133 I so understand. My husband and I are separated, he got crazy and I had to leave my beloved Florida to move back to hills. So upsetting. Which makes health issues worse.
Anyway, I wish you the best. I am suffering so this morning where I had the endometrial biopsies. It may be November before they get me in to check for cancer! My GP told me to be patient yesterday as I couldn't get in any sooner elsewhere. I am so tired of it all. Feel like my tortuous colon is hurting in response to where they did biopsies???
Very sensitive to procedure due to small fiber neuropathy which affects organs too.
We got to hang on my friend, our health care system is a mess. I am disabled RN and sad at lack of care and nurses leaving.
Hugs... ❤️

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1 reply
mbray1972 | @mbray1972 | Sep 27, 2022
In reply to @anniez "Yes, I have it. Years ago surgery at 28 for exploratory lap. Had history exposure to..." + (show)
@anniez

Yes, I have it. Years ago surgery at 28 for exploratory lap. Had history exposure to chemicals in research lab. Saw this diagnosis on my CT colonography scan in 2017 after my new GI doc couldn’t get a regular or pediatric scope in. I’m in my 70s. I’m careful about food choices as I also have diverticuli. A damaged ileocecal valve from previous colonoscopy also makes things challenging. I would recommend the Monash university app as it is best I’ve found so far. It is often the quantity of certain things eaten. A strict fodmap diet can cause nutrition problems over a long haul. It is not free app, about $8. I’m retired NP and diabetes educator. I’ve seen the wide swings in dietary advice. It can be confusing. Different health care providers don’t always have good background in nutrition. Moderation in all things. Good luck.

Jump to this post

Thank you for the response and I hope you have more good days than bad. I'm just tired of being in pain and seeing my life pass by. This was definitely not the life I had in mind growing up lol. Gotta take one day at a time and enjoy the good days as much as possible.
Just turned 50 and boy do I miss working and doing all kinds of things that I can't do now. Best wishes for us all ❤️

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sallyw133 | @sallyw133 | Sep 28, 2022
In reply to @trishh "@sallyw133 I so understand. My husband and I are separated, he got crazy and I had..." + (show)
@trishh

@sallyw133 I so understand. My husband and I are separated, he got crazy and I had to leave my beloved Florida to move back to hills. So upsetting. Which makes health issues worse.
Anyway, I wish you the best. I am suffering so this morning where I had the endometrial biopsies. It may be November before they get me in to check for cancer! My GP told me to be patient yesterday as I couldn't get in any sooner elsewhere. I am so tired of it all. Feel like my tortuous colon is hurting in response to where they did biopsies???
Very sensitive to procedure due to small fiber neuropathy which affects organs too.
We got to hang on my friend, our health care system is a mess. I am disabled RN and sad at lack of care and nurses leaving.
Hugs... ❤️

Jump to this post

Hugs to you, as well!

REPLY
kizso | @kizso | Nov 16, 2022

I just had my colonoscopy yesterday and was told the procedure was difficult due to significantly tortuous colon. That's it, they didn't say anything else about it, offer suggestions on how to deal with it, nothing. I did also have 2 polyps removed and they noted multiple diverticula throughout my colon. They did recommend my next scope happen in 3 years or sooner depending on the pathology report.
This was not the case with my last colonoscopy 5 years ago so the tortuous colon has developed over that time. In the last year or two I have had issues with constipation, bloating, gas, discomfort and weight gain. I am very concerned about the possibility of obstruction and committed to finding the best ways deal with this condition and reduce symptoms.
My thanks to all those sharing tips for what works best for you. I already drink lots of tea but plan to switch to plain water, add more fruits and vegetables, and possibly Benefiber to see if that helps.

REPLY
2 replies
annewithane | @annewithane | Nov 17, 2022
In reply to @kizso "I just had my colonoscopy yesterday and was told the procedure was difficult due to significantly..." + (show)
@kizso

I just had my colonoscopy yesterday and was told the procedure was difficult due to significantly tortuous colon. That's it, they didn't say anything else about it, offer suggestions on how to deal with it, nothing. I did also have 2 polyps removed and they noted multiple diverticula throughout my colon. They did recommend my next scope happen in 3 years or sooner depending on the pathology report.
This was not the case with my last colonoscopy 5 years ago so the tortuous colon has developed over that time. In the last year or two I have had issues with constipation, bloating, gas, discomfort and weight gain. I am very concerned about the possibility of obstruction and committed to finding the best ways deal with this condition and reduce symptoms.
My thanks to all those sharing tips for what works best for you. I already drink lots of tea but plan to switch to plain water, add more fruits and vegetables, and possibly Benefiber to see if that helps.

Jump to this post

Hi kiszo,
Sorry you also have this problem😢 I highly recommend you have a Bowel Transit Study done. It's an easy procedure, inexpensive and you will learn the shape of your colon - great to know where to do colon massage and the x-rays will show up any obstructions.
Molaxole is the most gentle laxative I've had in 35 years of this constipation problem. Apparently it has electrolytes in it which has to be good for you.
Wishing you all the best💞

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