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.

@colleenyoung

Welcome, @tlisaberry. I read either in this discussion or in another discussion that some members are concerned about long term usage of MiraLAX. My understanding is that it is an over-the-counter product that's typically used to treat short-term constipation. Do you use it for short periods of time?

I'm glad you have an appointment coming up soon with a specialist about your fainting bouts and low blood pressure when you have the need/urge to empty your bowels. Do you normally have low blood pressure?

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A gastroenterologist recommended long term daily use of Miralax along with psyllium (Metamucil) once a day to manage my IBS-C. I do not think this is uncommon.

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@kanaazpereira

Hi @onaquest @flguy @carcar,

A redundant colon is an abnormally long colon, especially in the final section (called descending colon). A redundant colon also has additional loops or twists. Other names for a redundant colon include tortuous colon or elongated colon. https://www.healthline.com/health/redundant-colon
I’m tagging @darlia and @rsinger22 who've written about redundant colon, and they may be able to share their experiences.

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Greetings Kanaaz-
I was scanning info on the Mayo connect and saw that you had tagged me two yrs ago! I've not been keeping up with this for that long either. So I was diagnosed with TORTUROUS colon in 2016, but didn't start to know I needed to ADDRESS it until like today
In researching..I see that I need to research this more
Any help is welcome!
Darlia

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@kanaazpereira

Hi @onaquest @flguy @carcar,

A redundant colon is an abnormally long colon, especially in the final section (called descending colon). A redundant colon also has additional loops or twists. Other names for a redundant colon include tortuous colon or elongated colon. https://www.healthline.com/health/redundant-colon
I’m tagging @darlia and @rsinger22 who've written about redundant colon, and they may be able to share their experiences.

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Hi Kanaaz, I'm new to this website and would like to introduce myself to everyone. Thought replying to you, the moderator, would be the best way. I was just told I have a redundant/fixed colon. Didn't surprise me much as I've suffered with IBS-C, dairy and gluten allergies all of my life. I've been through so many doctors and so many different opinions on what to eat, what not to eat and what drugs or supplements to take that it makes my head spin. This seems like such a great forum to discuss what works for you with others. The one solution I see most often commented on here is to take MiraLax everyday. That alone did not work for me. In combination with 2 stool softners every evening (taking the MiraLax in the am) worked to have a BM, but left me gassy and very bloated. Sadly, not good enough. I am currently working with a Nutritionist who is taking things very slowly, step by step to find a solution other than expensive drugs that cause massive side effects. Anyone out there try Linsess or Amitiza yet? If your thinking about it read the reviews!!! Stopped me dead in my tracks! I've been told this is my only solution short of surgery ever since they put this on the market. I refused to believe that. I'm tired of having to be home because my gut is so bad. I'm either bloated and can't wear my pants or I'm in pain and can't enjoy going out to dinner.
Currently, I'm trying keeping a food and liquid intake diary. Trying to increase liquid intake to at least 60 oz. a day. Helps to keep track. I've been told the Fodmap diet would not work for me. I'm currently trying low fiber because fiber makes me bloat. But here is the biggest experiment. 2 Stool softeners every night with 1-500mg Magnesium citrate tab. It's only been a week, but it's been a GOOD week! Some bloating, a bit gassy once in awhile but for the most part I can go every day and I'm not talking "nuggets" here!

If anyone out there would like to discuss issues and what's worked for them I'd love to hear it. I've struggled with constipation since I was 13 (that I remember being bad) I'm so tired of not being able to wear my clothes, the "HELP" I need sweat pants days. Of not being able to enjoy "relationship" time with my husband because I have a gut ache and feel "FAT".... I weigh 100lbs. :o(
I can't gain weight because I feel so full (bloated) I can't eat much. Trying to enjoy a vacation and worrying about how will I eat, what reaction will I have. Will I be stuck in a hotel room all bloated and gassy and can't go.

Ok...so I've vented. Anyone else ? Thanks and hope to hear from you all!!! Lets find solutions together!

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I had a colonoscopy two weeks ago because of my family history of colon cancer. The GI doctor said everything was fine. OK, so I read her notes from the colonoscopy and she stated that she had a lot of difficulty doing the colonoscopy because I had a tortuous/redundant colon (never said a word to me!), removed a couple of polyps (again never said a word). I have been experiencing abdominal cramps, nausea., a lot of gas, bloating and either diarrhea or constipation. So I have been trying to find out more about this redundant colon. I am not sure what a low FODMAP diet is. I have found if I eat a metamucial wafer once a day that helps with my bowel movements. The groups sounds like I might find some support and guidance! Thank you!!

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Usually you cut everything out and reintroduce things a bitcat a time to see if you can identify triggers

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thank you, that gives me a good starting, unfortunately I have to give up a lot of the stuff I love! If it helps, it is worth it! Thank you again!

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@sher71

Hi Kanaaz, I'm new to this website and would like to introduce myself to everyone. Thought replying to you, the moderator, would be the best way. I was just told I have a redundant/fixed colon. Didn't surprise me much as I've suffered with IBS-C, dairy and gluten allergies all of my life. I've been through so many doctors and so many different opinions on what to eat, what not to eat and what drugs or supplements to take that it makes my head spin. This seems like such a great forum to discuss what works for you with others. The one solution I see most often commented on here is to take MiraLax everyday. That alone did not work for me. In combination with 2 stool softners every evening (taking the MiraLax in the am) worked to have a BM, but left me gassy and very bloated. Sadly, not good enough. I am currently working with a Nutritionist who is taking things very slowly, step by step to find a solution other than expensive drugs that cause massive side effects. Anyone out there try Linsess or Amitiza yet? If your thinking about it read the reviews!!! Stopped me dead in my tracks! I've been told this is my only solution short of surgery ever since they put this on the market. I refused to believe that. I'm tired of having to be home because my gut is so bad. I'm either bloated and can't wear my pants or I'm in pain and can't enjoy going out to dinner.
Currently, I'm trying keeping a food and liquid intake diary. Trying to increase liquid intake to at least 60 oz. a day. Helps to keep track. I've been told the Fodmap diet would not work for me. I'm currently trying low fiber because fiber makes me bloat. But here is the biggest experiment. 2 Stool softeners every night with 1-500mg Magnesium citrate tab. It's only been a week, but it's been a GOOD week! Some bloating, a bit gassy once in awhile but for the most part I can go every day and I'm not talking "nuggets" here!

If anyone out there would like to discuss issues and what's worked for them I'd love to hear it. I've struggled with constipation since I was 13 (that I remember being bad) I'm so tired of not being able to wear my clothes, the "HELP" I need sweat pants days. Of not being able to enjoy "relationship" time with my husband because I have a gut ache and feel "FAT".... I weigh 100lbs. :o(
I can't gain weight because I feel so full (bloated) I can't eat much. Trying to enjoy a vacation and worrying about how will I eat, what reaction will I have. Will I be stuck in a hotel room all bloated and gassy and can't go.

Ok...so I've vented. Anyone else ? Thanks and hope to hear from you all!!! Lets find solutions together!

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I was put on a regimen of pysillium plus Miralax in the a.m. and Miralax in the evening. (Plus a fodmap diet which is impossible to be on forever particularly when you are already a celiac. ) Contrary to its commercials, Miralax made me very bloated and gave me persistent cramping). My diagnosis is IBS-C (long time) but many of my symptoms overlap with redundant colon and SIBO so find it interesting to follow. My medications make my problem worse.
Magnesium does work but I need more than 500mg. 2 tablespoons of Milk of Magnesia is over 2000mg of magnesium hydroxide which does the trick. I have an arrythmia so have to be careful re ingesting excessive amounts of magnesium.
I did try linaclotide (linzess) but it gave me horrible impossible to live with pain. My doctor did prescribe another med not sure if its amitzia, different names in Canada but because this med could potential trigger palpitations my cardiologist told me better to stay away or if I do try it I must have a holter monitor test. Forget it. During this pandemic who wants to increase medical appointments. Prefer the side effects of over the counter laxatives. Right now, I am mainly using Senokot (I know it's not the best choice). It works.
This unsolvable constipation problem has led to a new painful humiliation. (Possible fissure: awaiting appointment 🥴). Saw your reference to a stool softener. Think I need that.
I am also a lightweight (under 110lb) so can totally relate to the gas and bloating. Its winter, oversized-sweaters with leggings works.🙃

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@sue225

I was put on a regimen of pysillium plus Miralax in the a.m. and Miralax in the evening. (Plus a fodmap diet which is impossible to be on forever particularly when you are already a celiac. ) Contrary to its commercials, Miralax made me very bloated and gave me persistent cramping). My diagnosis is IBS-C (long time) but many of my symptoms overlap with redundant colon and SIBO so find it interesting to follow. My medications make my problem worse.
Magnesium does work but I need more than 500mg. 2 tablespoons of Milk of Magnesia is over 2000mg of magnesium hydroxide which does the trick. I have an arrythmia so have to be careful re ingesting excessive amounts of magnesium.
I did try linaclotide (linzess) but it gave me horrible impossible to live with pain. My doctor did prescribe another med not sure if its amitzia, different names in Canada but because this med could potential trigger palpitations my cardiologist told me better to stay away or if I do try it I must have a holter monitor test. Forget it. During this pandemic who wants to increase medical appointments. Prefer the side effects of over the counter laxatives. Right now, I am mainly using Senokot (I know it's not the best choice). It works.
This unsolvable constipation problem has led to a new painful humiliation. (Possible fissure: awaiting appointment 🥴). Saw your reference to a stool softener. Think I need that.
I am also a lightweight (under 110lb) so can totally relate to the gas and bloating. Its winter, oversized-sweaters with leggings works.🙃

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My G.I. suggested Lax-a-Day (Canada)every day, plus 1 tsp Metamusil every day, plus FOR SURE 2 litres of water every day.  I'm  improving!  Good luck!

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@sue225

I was put on a regimen of pysillium plus Miralax in the a.m. and Miralax in the evening. (Plus a fodmap diet which is impossible to be on forever particularly when you are already a celiac. ) Contrary to its commercials, Miralax made me very bloated and gave me persistent cramping). My diagnosis is IBS-C (long time) but many of my symptoms overlap with redundant colon and SIBO so find it interesting to follow. My medications make my problem worse.
Magnesium does work but I need more than 500mg. 2 tablespoons of Milk of Magnesia is over 2000mg of magnesium hydroxide which does the trick. I have an arrythmia so have to be careful re ingesting excessive amounts of magnesium.
I did try linaclotide (linzess) but it gave me horrible impossible to live with pain. My doctor did prescribe another med not sure if its amitzia, different names in Canada but because this med could potential trigger palpitations my cardiologist told me better to stay away or if I do try it I must have a holter monitor test. Forget it. During this pandemic who wants to increase medical appointments. Prefer the side effects of over the counter laxatives. Right now, I am mainly using Senokot (I know it's not the best choice). It works.
This unsolvable constipation problem has led to a new painful humiliation. (Possible fissure: awaiting appointment 🥴). Saw your reference to a stool softener. Think I need that.
I am also a lightweight (under 110lb) so can totally relate to the gas and bloating. Its winter, oversized-sweaters with leggings works.🙃

Jump to this post

I am a very lightweight! 93 lbs, I keep losing, just can't keep the weight on. that's all I wear oversized sweaters and leggings!! A friend suggested the pysillium also, I just started taking that. I tried miralax but that gave me watery diarrhea. I guess you just try things until you find something that works. I bought some the Almond Silk yogurt tonight, I love yogurt and it was really pretty good.

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