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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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kiggabong | @kiggabong | 4 days ago
In reply to @phlebe "I have had several episodes over appx. 2 year period. It starts with severe cramping across..." + (show)
Profile picture for phlebe @phlebe

I have had several episodes over appx. 2 year period. It starts with severe cramping across my entire lower abdomen. Gets increasingly worse until ultimately I break out in a sweat all over, not just my forehead, like a slick sweat over my entire body, and both arms go numb from shoulders to fingertips.
The first time it happened my hands started to draw up. Since then, my hands have not drawn up again. But the sweating and arms going numb happens. Sometimes accompanied by bowel movement, sometimes not. But when it occurs, there is a panicky, sick feeling that happens. It's like I'm sick, I'm hurting, I cant breathe but I can...I honestly don't know how to explain it because I don't know what I feel. It's crazy! I literally call out, loudly, "God please make it stop." It's all I can do. In my mind it lasts several minutes. Two nights ago, my husband said the hollering went on for about an hour.
It happens about every 6 months or so. Cardiologists suggest it's vasovagal. But I'm not convinced. I have a tortuous colon. GI doc has to use a pediatric scope to do my colonoscopies. There have been some pre-cancer fold removed a couple times.
I'm at wits end and no one can explain it to make me, nor give me information on how to prevent it. Vasovagal, in my research, does not explain it at all.

Any ideas???

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@phlebe What you describe is my life. I am female, 5’2” fairly healthy 74 and still have those vocal episodes in severe pain just like you - sweating, chills, stabbing cramps, and my worst part, a migraine with 12-18 hours of vomiting bile, then dry heaves, which won’t subside until the gut calms, then… maybe a BM or not. All this takes 12-18 hours from my life. My biggest disappointment over the years is I haven’t found a doctor who takes it seriously. Also, many people have never heard of a torturous or redundant colon. I hope they start talking about this.

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standinginfaith | @standinginfaith | 4 days ago
In reply to @phlebe "I have had several episodes over appx. 2 year period. It starts with severe cramping across..." + (show)
Profile picture for phlebe @phlebe

I have had several episodes over appx. 2 year period. It starts with severe cramping across my entire lower abdomen. Gets increasingly worse until ultimately I break out in a sweat all over, not just my forehead, like a slick sweat over my entire body, and both arms go numb from shoulders to fingertips.
The first time it happened my hands started to draw up. Since then, my hands have not drawn up again. But the sweating and arms going numb happens. Sometimes accompanied by bowel movement, sometimes not. But when it occurs, there is a panicky, sick feeling that happens. It's like I'm sick, I'm hurting, I cant breathe but I can...I honestly don't know how to explain it because I don't know what I feel. It's crazy! I literally call out, loudly, "God please make it stop." It's all I can do. In my mind it lasts several minutes. Two nights ago, my husband said the hollering went on for about an hour.
It happens about every 6 months or so. Cardiologists suggest it's vasovagal. But I'm not convinced. I have a tortuous colon. GI doc has to use a pediatric scope to do my colonoscopies. There have been some pre-cancer fold removed a couple times.
I'm at wits end and no one can explain it to make me, nor give me information on how to prevent it. Vasovagal, in my research, does not explain it at all.

Any ideas???

Jump to this post

@phlebe I have had a tortious colon and struggled all my life..hospitialized 3 times.. and have had the same sick screaming ..it got so bad one time I started sweating..and nothing up or down..swaeted out all my fluids and my boyfriend found me on the floor unable to dress..talk.. I just said call an ambulance.. when they got here my blood pressure was 60 over 40 and I had sweated out all of my fluids so badly it took 20 min for him to get and IV started.. (no veins to be found) ..I used 2 bags of fluid on the 45 minute drive to the hospital.. keep me for a week.. called it colitis.. I try very hard not to let if get to that point.. I take trulance.. miralax (3 times a day if necessary ) and drink pear juice.. eating is very scary and dangerous..I also have been recently diagnosed with Chronis spontaneous hives.. I feel your pain!! you are not alone!! I will pray for you!!

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upartist | @upartist | 4 days ago
In reply to @kanaazpereira "Welcome to Connect, @karena65 and @teresagiselle. I thought you might be interested in reading this journal..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Welcome to Connect, @karena65 and @teresagiselle.

I thought you might be interested in reading this journal article, which offers an in-depth look at redundant colon: https://www.wjgnet.com/1948-9366/full/v10/i2/6.htm

@karena65, as you said, "Key words for me is faith and self-discipline...” So often we tend to equate self-discipline with deprivation, giving up things or sacrificing joy. I thought I’d share an interesting take on self-discipline – something I had read a while ago – where the author encourages readers to associate self-discipline with inner strength, resilience and not giving IN rather than giving UP.

@teresagiselle, I’m glad to know that the fiber powder has helped you find some relief. Since you mentioned family history of colon cancer, I encourage you to also take a look at the conversations taking place in the Colorectal Cancer group on Connect: https://connect.mayoclinic.org/group/colorectal-cancer/
Besides colonoscopy, has your GI recommended any other therapy or surveillance steps?

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@kanaazpereira Hello Kanaaz. Do you have any more recent articles referencing Dolichocolon, or redundant tortuous colon? I am working with my GI doc to manage mine, and it is quite a challenge to maintain the balance. When there are comorbidities tossed into the mix, this balance falls apart quickly. So information regarding variants and medically supported strategies for redundant tortuous colon, helps me (and many others) trouble shoot to accurately fend off emergencies and prevent distraction from the main plan.... which is to keep the bowel mobile while preventing dehydration, achieving good nutrition, and maintaining homeostasis of blood electrolytes. GI issues are complicated, and they affect so many bodily systems, and vice versa. Its definitely a balancing act, so information and validated studies are helpful. Thanks Kanaaz! Moderating is a big job!

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Moderator
Lisa Lucier, Moderator | @lisalucier | 4 days ago
In reply to @upartist "@kanaazpereira Hello Kanaaz. Do you have any more recent articles referencing Dolichocolon, or redundant tortuous colon?..." + (show)
Profile picture for upartist @upartist

@kanaazpereira Hello Kanaaz. Do you have any more recent articles referencing Dolichocolon, or redundant tortuous colon? I am working with my GI doc to manage mine, and it is quite a challenge to maintain the balance. When there are comorbidities tossed into the mix, this balance falls apart quickly. So information regarding variants and medically supported strategies for redundant tortuous colon, helps me (and many others) trouble shoot to accurately fend off emergencies and prevent distraction from the main plan.... which is to keep the bowel mobile while preventing dehydration, achieving good nutrition, and maintaining homeostasis of blood electrolytes. GI issues are complicated, and they affect so many bodily systems, and vice versa. Its definitely a balancing act, so information and validated studies are helpful. Thanks Kanaaz! Moderating is a big job!

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@upartist - if you'd like to see some of the latest publications referencing Dolichocolon or redundant tortuous colon, you might check our Google Scholar https://scholar.google.com/. You can filter by year, author, keyword, etc.

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