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.

@amandaa

Hi @chenry44 and welcome to Mayo Clinic Connect. Sounds like you are having a difficult time after your colon removal. You will see that I moved your post to a discussion that talks about the struggles and symptoms you are having. I did this so that you can connect with other members like @seasalted, @brendaharvey, and @euqcaj

Have you had a chance to talk with your medical team about the possibility of introducing new foods and what is normal?

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I talked with my doctor about it during the follow-up visits within a few months after the surgery, and everything was typical and on schedule for healing at that time. I have not had any interactions since then, but have just been trying to address the situation via diet and nutrition to restore my microbiome that was completely destroyed by the intense laxatives and antibiotics necessary for the surgical procedure. It has just been a struggle since the foods that are most problematic still are also the foods that are most nutritious. I don't like taking supplements, preferring to get everything from nutrient-dense foods.

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@chenry44

I talked with my doctor about it during the follow-up visits within a few months after the surgery, and everything was typical and on schedule for healing at that time. I have not had any interactions since then, but have just been trying to address the situation via diet and nutrition to restore my microbiome that was completely destroyed by the intense laxatives and antibiotics necessary for the surgical procedure. It has just been a struggle since the foods that are most problematic still are also the foods that are most nutritious. I don't like taking supplements, preferring to get everything from nutrient-dense foods.

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I have not yet heard from the surgeon I saw to see if partial colon removal would help me.
However, two of my sisters had this surgery and both did really well for many years and both passed away in their 80’s from non related health issues.

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@cristinaespejo

Could you shared what kind of diet helped you with your tortuous colon symthoms?

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Just diagnosed with tortuous colon, and not clear on what diet to follow. FODMAP? High fiber? Would appreciate any suggestions.

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@pbt

Just diagnosed with tortuous colon, and not clear on what diet to follow. FODMAP? High fiber? Would appreciate any suggestions.

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Hello I've had a tortuous intestine, and dealt with it's consequences, for all my 70 years here on this earth. I'm surprised that the Dr. didn't inform you of diet! But I'm also not surprised. And, I believe, it's different for all of us. It's a continual learning experience. For me, there has not been a "cut and dry" formula. Unfortunately, because it would have been ALOT easier! Originally, I was told, lots of water (min. of 6-12 oz. glasses) per day, lots of fiber, Miralax (which didn't work for me), stool softener, magnesium citrate, etc. I use Metamucil crackers occasionally when I'm needing the extra. I use psyllium (8 mg) sprinkled on oatmeal and cereal) daily. But currently, I found Prunelax to work very well, most of the time, depending on other factors, such as diet, sleep, etc. I am taking the mini tabs, (3 to 4) nightly. I have found that I need to use Bisacodyl once a week or every other week. I also plan on trying the extra strength Prunlax when I finish my supply of mini tabs. Prunelax has worked so much better for me than Miralax. I have been on this site for a year and what I see is different things work for different people. Doctors seem to have forgotten that, at least in my area. You, as an individual, have to keep trying different dosages, brands, etc. to find what works best for your body. Remember, with a tortuous intestine, we have a much slower transit time than "regular" folks and things can get backed up and much more difficult to pass. So exercise, water, trying different aids, such as Prunlax, not eating too much cheese, or certain types of food,..............all help in you finding what works best for you. It's a process and a frustrating one sometimes. Sometimes we don't feel good at all until we change what we're doing and try something else. It's been a journey. But thank God above, I'm still here and still learning. I wish the same for you. Jacque

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@euqcaj

Hello I've had a tortuous intestine, and dealt with it's consequences, for all my 70 years here on this earth. I'm surprised that the Dr. didn't inform you of diet! But I'm also not surprised. And, I believe, it's different for all of us. It's a continual learning experience. For me, there has not been a "cut and dry" formula. Unfortunately, because it would have been ALOT easier! Originally, I was told, lots of water (min. of 6-12 oz. glasses) per day, lots of fiber, Miralax (which didn't work for me), stool softener, magnesium citrate, etc. I use Metamucil crackers occasionally when I'm needing the extra. I use psyllium (8 mg) sprinkled on oatmeal and cereal) daily. But currently, I found Prunelax to work very well, most of the time, depending on other factors, such as diet, sleep, etc. I am taking the mini tabs, (3 to 4) nightly. I have found that I need to use Bisacodyl once a week or every other week. I also plan on trying the extra strength Prunlax when I finish my supply of mini tabs. Prunelax has worked so much better for me than Miralax. I have been on this site for a year and what I see is different things work for different people. Doctors seem to have forgotten that, at least in my area. You, as an individual, have to keep trying different dosages, brands, etc. to find what works best for your body. Remember, with a tortuous intestine, we have a much slower transit time than "regular" folks and things can get backed up and much more difficult to pass. So exercise, water, trying different aids, such as Prunlax, not eating too much cheese, or certain types of food,..............all help in you finding what works best for you. It's a process and a frustrating one sometimes. Sometimes we don't feel good at all until we change what we're doing and try something else. It's been a journey. But thank God above, I'm still here and still learning. I wish the same for you. Jacque

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Thank you so very much, Jacque, for your thoughtful, detailed response. My GI doctor's office has been 'unavailable' to provide any guidance, so I am appreciative for this advice. I'm 68 years old and have had microscopic colitis up until a few years ago. That has now resolved, but apparently a tortuous colon is now the main issue, quite the opposite. I am going to implement your suggestion of Prunelax tabs -- I also am not responding to Miralax, and work to increase water and exercise. The internet advice I've googled seems to swing from no fiber to more fiber, so I am a bit confused there. Thank you again!

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@seasalted

Hello all .... I just joined Mayo Clinic Connect. It is my latest grasp at getting information and help with my tortuous colon condition, which has plagued me for 40 of my 54 years. I was diagnosed with tortuous colon in 2012, and had a bunch of tests performed on me which ruled out celiac, Crohn's, gluten allergy, and other stuff. I have some food sensitivities, but essentially all my GI problems are due to my tortuous colon. Basically I am constipated 24/7/365 because my colon is a long and winding road from which nothing emerges at the end without some sort of intervention. In the very best of scenarios, usually with the help of coffee after strenuous exercise, I go once a week, two at most. I start out each day feeling OK, but as the day goes on and as I ingest food, I feel worse and worse with the bloating, gas, and general feeling that I am carrying around a cantaloupe in my abdomen. I am a relatively small person, but my stomach area feels disproportionately big because of my tortuous colon and the stuff in it that I carry around from not being able to ditch it like a normal person. My gut feels best when I don't eat (except for that hunger thing). I relate to @sher71 and probably a lot of others in this. I drink lots of water, exercise every day, and eat as much fiber as I can. So my condition would be even worse if I didn't do these things.

From reading the many posts in this thread, I see that a tortuous colon is not as rare as I thought it is. I feel better at the thought of being able to talk to people about this, people who know what it is like to have to live with this. People who have been told (e.g. @scottisfull), as I have been told, that a tortuous colon is not a big deal and can be totally managed by more fiber, water and exercise. People who know this is not true.

In the last couple of days of reading this thread, I have gotten some ideas that I will try, and just for that I am already very happy and grateful. I learned that there are many like me who have to take 3 or 4 doses of Miralax per day in order for it to do anything. Or, take other stuff, natural and otherwise, to coax the colon to wake up and do something. I relate to those like @lasirvent and @dianecostella who have one thing (or nothing) that works for them.

I started thinking the only solution for me is to take out the extra loops and twists and lengths of my colon in order to get better. Looks like some folks like @thellman and @emma83916 are also thinking about this, and some, like @ellemorgan and @kathyoung, have had it done. I would love to discuss further.

Happy New Year to everyone and I wish all a 2022 with a better stomach.

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Welcome, seasalted!
You described my daily life so well that I printed your post and took it to my GI doctor appointment! I brought up the subject of resection surgery to remove some of the extra loops and twists, and she said that surgeons will not do that unless it is an emergency situation and there is a total obstruction or strangulation of colon (volvulus). I had emergency surgery for that condition when I was 30 years old, but they did not remove any of my colon. Just "flipped it back". So I've been struggling with this for 38 years now. I keep a food diary and am trying to get myself into a "regular" routine but I am either constipated or have diarrhea from laxatives. Some days are worse than others. I had no idea there were so many others like me until I joined Mayo Clinic Connect, which I found by accident just a few months ago. It is very helpful to me when I start feeling sorry for myself. Good luck, and I look forward to your future posts.

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I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

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@janicerenee

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

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Fire him and find a new GI Dr.

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@janicerenee

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

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I am 70 years old and active and otherwise healthy, except for the tortuous intestine I've dealt with all my life. I wanted to share with you my decision to not have any more colonoscopies. The last one this past year was devastating on my body because of the difficulty for the Dr. to do the procedure with my colon. It left me "tortured" and I told her I was never going through this procedure again. ( She mentioned there are other ways to check for polyps etc. for preventative measures.) Possibly I will look into that down the road. But, as I said, with the tortuous intestine, you run the risks of the intestinal wall being punctured and then having more problems than you bargained for. My insides were so irritated it took weeks for the bulging to recede. I am not exaggerating. I will never (I really don't want to!) ever have a colonoscopy again with my long tortuous intestine. I just don't think it's the best thing in my case. And I believe there are many others out there like me. Please find a doctor that will listen and treat you as an individual and not just "follow the script". All the recommendations that were originally suggested for me, such as Miralax, more fiber (which isn't a bad idea), more water, probiotics, and on and on, didn't fit what I needed for me. Miralax didn't work. I followed everything I was told to do because I really wanted to improve this condition. It can make you feel so sick at times. It was on this site that other people had mentioned Prunelax to help with irregularity. It has worked great for me most of the time. I do use Bisacodyl every week or two to help the system really clean out. And this advice was through others on this site, not a doctor. It has been the best advice! Best wishes to you! Jacque

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@janicerenee

I only learned about my "torturous colon" by reading the report from my colonoscopy, in which my doctor talked about how challenging it was to do the procedure. No mention to me, no follow up, even though he knows I've been having wacky GI symptoms for a while. I know the system is overloaded and weary. It's just very sad.

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Exact same experience -- no followup, no guidance. This site has provided the only info for me to date.

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