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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sallyw133 | @sallyw133 | Jul 16, 2022
In reply to @sickofbeinsick1 "OMG!! Sounds like you and I have the same kind of luck. I would be furious..." + (show)
@sickofbeinsick1

OMG!! Sounds like you and I have the same kind of luck.
I would be furious as well !
That’s exactly why I’m leery of having another colonoscopy …but that doctor did you bad

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I’m sick of all of them!

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 16, 2022
In reply to @notmoff "I increased my use of water, fiber, and most importantly, supplemental senna, Miralax and stool softeners..." + (show)
@notmoff

I increased my use of water, fiber, and most importantly, supplemental senna, Miralax and stool softeners to prevent obstipation following a compression fracture.

I have now been diagnosed with hyponatremia and urged to immediately go to the ER for a saline iv. My complying resulted in sitting in the crowded ER for 6 hours last night, told they had no empty room necessary to insert the iv and just to quietly wait for an empty room, without drinking any water or risk death. I returned home, didn't die but discovered that I had likely induced this condition by taking too many laxatives and water.
Sounds unlikely but true. Subsequent calls = same answer - return to ER and wait.

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I’ve done the same…go to ER.
If you’re not bleeding or having a heart atttack, you go to the back of the line. I’ve left the ER before as well

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sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 16, 2022
In reply to @sallyw133 "Are you kidding!’Severe abdominal pain sent me to the ER. The dr there called my Gi,..." + (show)
@sallyw133

Are you kidding!’Severe abdominal pain sent me to the ER. The dr there called my
Gi, 4 hrs away. The two decided I needed a colonoscopy. So the next afternoon a local surgeon performed it. No gi locally. Didn’t show anything other than tortuous colon. So my gi decides, one month later, he wants to do it himself as the other dr wasn’t a gi. Off I
Travel to Cleveland, do the prep in a hotel room, only to find out the prep wasn’t complete enough for him to do most of what he planned to do. And he didn't even come back to talk to me. I was furious!

Jump to this post

OMG!! Sounds like you and I have the same kind of luck.
I would be furious as well !
That’s exactly why I’m leery of having another colonoscopy …but that doctor did you bad

REPLY
1 reply
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 16, 2022

I wish you well…I’ve been snake bitten…I’ve had so many scopes, last in 2020. I’ve found another I’ve yet to see, but the 1st thing on the list is duh, another colonoscopy…I don’t know what to do!
😩

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nlb28 | @nlb28 | Jul 16, 2022
In reply to @sickofbeinsick1 "That sounds awful….are they gonna remove some herniated section?" + (show)
@sickofbeinsick1

That sounds awful….are they gonna remove some herniated section?

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I see them on the 21st. If it can help me I would do it

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sallyw133 | @sallyw133 | Jul 16, 2022

Are you kidding!’Severe abdominal pain sent me to the ER. The dr there called my
Gi, 4 hrs away. The two decided I needed a colonoscopy. So the next afternoon a local surgeon performed it. No gi locally. Didn’t show anything other than tortuous colon. So my gi decides, one month later, he wants to do it himself as the other dr wasn’t a gi. Off I
Travel to Cleveland, do the prep in a hotel room, only to find out the prep wasn’t complete enough for him to do most of what he planned to do. And he didn't even come back to talk to me. I was furious!

REPLY
1 reply
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @nlb28 "I don't want to live with this diverticula that keeps me going from bowel block to..." + (show)
@nlb28

I don't want to live with this diverticula that keeps me going from bowel block to diarrhea.
Just found out I have a hernia in my stomach. 4 ft of narrowed bowel

I'm hoping for this one last try

Jump to this post

That sounds awful….are they gonna remove some herniated section?

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1 reply
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @sallyw133 "Just my totally non-medical advice. Working with a dietician who has advised fiber is actually counterproductive..." + (show)
@sallyw133

Just my totally non-medical advice. Working with a dietician who has advised fiber is actually counterproductive for tortuous colon. I’ve been following a low-fiber diet and though, not perfect by any means, have felt better the past month and mostly better BM’s. Have had to add in some mag oxide and Miralax occasionally to move things along and must drink a lot of water. I’ve also been under a huge amount of stress last too weeks with two new diagnoses to deal with.

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Magnesium citrate has worked WELL for me in the past….I was in dire straits….not sure I’d advise anyone who isn’t completely blocked to drink that…not sure what the diff is between citrate & oxide

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nlb28 | @nlb28 | Jul 15, 2022

I don't want to live with this diverticula that keeps me going from bowel block to diarrhea.
Just found out I have a hernia in my stomach. 4 ft of narrowed bowel

I'm hoping for this one last try

REPLY
1 reply
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jul 15, 2022
In reply to @notmoff "To: sickofbeinsick1 AKA Tina Thanks for the details although you may tire of reciting them as..." + (show)
@notmoff

To: sickofbeinsick1 AKA Tina
Thanks for the details although you may tire of reciting them as I am of repeating all my symptoms and "issues". I have a few more issues than you have, but I will spare you. I haven't had a hip implant, however. My issue is serious weight and muscle mass loss, not gain.
A few of your ideas give me hope and if you have time, I'd like to hear more . . .
1. Maternity underwear? Like you, with any pressure anywhere on my trunk, the usual pain increases quickly so I limit my time in public where I try to look presentable. Can you suggest any online sources of big, stretchy maternity underpants that don't fall off? How do yours stay up? Stretchy throughout? Although I am 5'4" (was 5' 9" before compression fractures) and 103 lbs, my bloated tummy is VERY large.

2. Protein shakes/powders? - I'm new to protein shakes but bought some soy milk powder to mix with water, peanut butter, maybe a frozen banana and some dates but I think there are higher protein ingredients. Any suggestions?

It sounds like you have made a LOT of progress. Normal underwear and nice clothes may well be in your future!

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I had to laugh about underwear…sometimes mine get stretched or my bloat goes down & I DO have a problem keeping them on sometimes (I’m laughing with, not at you) it’s horrible! I just get cotton undies at Walmart, I had to check….they’re not maternity just 2X but there’s no binding elastic.
As far as food…I’ve found there’s a lot more soft than I thought…
guacamole, just about any cooked. veggies, I do the protein shakes, I tried the powder…to compare cuz the drinks are $$
THE biggest thing that I’ve done, besides soft food is waiting. With a long colon, it takes a lot longer for food to go ALL the way through, so..waiting & eating small portions 👍.
You say bananas? That could bind you up & take even longer, same with PB, even bread for that matter. V-8, prune juice, water…
also energy drinks…(sugar free)I can have a small burger w/ half the bun. I’ll try to think of other stuff.
And thank you for your input
😊

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