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.

I had no choice but surgery to remove all but 9 inches of my colon after numerous obstructions, constant massive distension, NG tubes and hospital stays. It’s been 6 years and although it left me with things to deal with, I don’t regret the surgery.

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@nixbroome

Hi
I was diagnosed today. Also he bottom bit is redundant. I've had problems my entire life, especially with urinary frequency as it's sitting on my bladder. Also gas and constipation. I blamed diabetes type 1 and codeine dependence (which don't help). Now I guess will try that diet.

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Is this a ct scan image?

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I’m new to this group, but have been dealing with digestive issues for years. I do not have food allergies or celiac, but I do have some food sensitivities. I mostly deal with chronic constipation, cramps, bloating, etc. I was diagnosed with IBS many years ago. I also had Endometrial Cancer in 2019, which has been treated and there is currently no evidence of disease. For the last 6-8 months, I have had a lot of pain on my lower right side and back when I lay on that side. I recently had a colonoscopy where multiple polyps were removed and I was told that I have a tortuous colon. Is it possible the build up of stool could be causing the pain?

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@kalbran1

I’m new to this group, but have been dealing with digestive issues for years. I do not have food allergies or celiac, but I do have some food sensitivities. I mostly deal with chronic constipation, cramps, bloating, etc. I was diagnosed with IBS many years ago. I also had Endometrial Cancer in 2019, which has been treated and there is currently no evidence of disease. For the last 6-8 months, I have had a lot of pain on my lower right side and back when I lay on that side. I recently had a colonoscopy where multiple polyps were removed and I was told that I have a tortuous colon. Is it possible the build up of stool could be causing the pain?

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Hi there @kalbran1 and welcome to Mayo Clinic Connect! So glad you do not have any any food allergies because mixed with IBS and tortuous colon can definitely exacerbate that.
You will see that I moved your post to a long standing discussion about tortuous colon and a lot of members talk about IBS as well as pain. I encourage you to read over the multiple pages from these individuals so you can connect with them.

When they did the colonoscopy, did they mention a build up of stool at all?

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@amandaa

Hi there @kalbran1 and welcome to Mayo Clinic Connect! So glad you do not have any any food allergies because mixed with IBS and tortuous colon can definitely exacerbate that.
You will see that I moved your post to a long standing discussion about tortuous colon and a lot of members talk about IBS as well as pain. I encourage you to read over the multiple pages from these individuals so you can connect with them.

When they did the colonoscopy, did they mention a build up of stool at all?

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Thanks! They did not mention build up of stool with the colonoscopy, but I was completely cleaned out from the prep. They did mention stool build up at my last CT scan earlier in the year.

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@amyvb

I have had IBS-C issues for as long as I can remember, but about 7 years ago they became chronic to the point where I can go a week (or more) without any bowel movement if I'm not taking laxatives. I have had dozens of tests, and the only useful information I have received so far was from a visit to the Mayo clinic in Rochester a little over a year ago, where they discovered I have a "highly tortuous colon" and could barely complete a colonoscopy. The recommendations at that time included increasing my fiber, which doesn't help at all. Other tests have also revealed that I have a partially prolapsed lower colon, but not to the point where surgery would be a good idea. Taking fiber supplements makes me extremely bloated and becomes unbelievably painful, and Miralax makes me sick to my stomach and doesn't do too much to move things along. I've tried different things with my diet, and right now, I mostly eat white rice (brown is too hard to digest), vegetables, and small amounts of protein. I feel like i'm going a little crazy trying different things like eliminating dairy or other food restrictions, but I don't know what else to do. I completely avoid gluten. I've been very active my whole life...have run marathons and done lots of strength training and different types of endurance races, but recently I don't have the energy for the types of training that these events require. @karena65 Do you have a resource that you can share on the whole plant diet? Is there any other advice anyone can share?

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Hi Amy. I hope this gets to you, as I see your post was made a while ago. I have struggled a long time with the same symptoms. I have had several colonoscopies, a few polyps. No one has said I have a redundant colon but I’ve always wondered. My very first colonoscopy was done when I was in my early 30s because of symptoms. My GP did it (not sure that was wise) and said things were fine. As I left the exam room, I heard him say to the nurse, “That’s the longest colon I’ve ever seen.” I was young and didn’t think to ask any questions. So 35 years later I’m in bad shape. I saw an Australian doctor who suggested I have a SIBO test (small intestine bacterial overgrowth). I came up very high in SIBO, lots of bacteria. I follow a FODMAP diet and it’s been very helpful. Has anyone else in this group had that test and gotten those results? I also agree with the benefits of self discipline as an act of self-empowerment and not deprivation. I had a bout of symptoms recently and it was due to eating a larger portion than is recommended. I have experienced unintentional weight loss which is ok but not if I lose anymore. I’m a coffee drinker and I know I need to cut back, but all in good time. This is long, but it was a long hard road that got me here. Bless you all for sharing and I’d love to hear back from SIBO survivors and FODMAP followers. Thank you 😊

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@nixbroome

Hi
I was diagnosed today. Also he bottom bit is redundant. I've had problems my entire life, especially with urinary frequency as it's sitting on my bladder. Also gas and constipation. I blamed diabetes type 1 and codeine dependence (which don't help). Now I guess will try that diet.

Jump to this post

Is this a CT Scan? Did you have to do a prep for this? Do you know how much extra colon you have?

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@ken82

@sickofbeinsick1 Where did you go to get that kind of medical treatment? Certainly was not Mayo MN...Mayo and I keep in touch via the prescription renewals and when they require that I check-in the pharmacist tells me.. and during the Pandemic I have had 2 telephone sessions with my GI doctor there in Rochester. Now that I have had my 2 shots we plan an onsite visit in May ...(I live a 3 hour drive away from Mayo MN.). When I do other than GI visits at Mayo my GI doc always mentions those visits or problems during our sessions.. Mayo has a different pay arrangements with doctors than most places.. so given that they Mayo doctors act differently ...and as a team.

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I live in Tx…there are MANY Dr’s here…if it’s just this state, I’m in BIG trouble!

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I’m just reading MyChart results from my colonoscopy last week and find I have a tortuous left colon. It’s the weekend so I won’t be able to talk to anyone at the office until next week. I’ve looked up all the words and have a sense that I have known some of this for many years, a pain in my side after eating and at other times. I’ve had intermittent episodes of extreme diarrhea and abdominal pain with no known food trigger, intensifying this last year. I have followed, loosely, the FODMAP diet described and a gluten-free and no/low dairy diet for even longer.

Many of the suggestions and comments have been very interesting to me and presented things that I plan to try. I do want to share something I do and will do more because they work for me…particular yoga poses that open and expand the abdominal area. Poses like viparita karani (legs up the wall), setu banda (low bridge) and sirsasana (head stand) all allow the abdomen to have more space, open and move toward the spine. This can relax the body and the abdomen to relieve pain and allow movement in the gut.

We are our own best advocates. I’m finding many medical opinions are just that and do not address my particular set of challenges that I must study and discover for my own body.

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@kayburnett

I’m just reading MyChart results from my colonoscopy last week and find I have a tortuous left colon. It’s the weekend so I won’t be able to talk to anyone at the office until next week. I’ve looked up all the words and have a sense that I have known some of this for many years, a pain in my side after eating and at other times. I’ve had intermittent episodes of extreme diarrhea and abdominal pain with no known food trigger, intensifying this last year. I have followed, loosely, the FODMAP diet described and a gluten-free and no/low dairy diet for even longer.

Many of the suggestions and comments have been very interesting to me and presented things that I plan to try. I do want to share something I do and will do more because they work for me…particular yoga poses that open and expand the abdominal area. Poses like viparita karani (legs up the wall), setu banda (low bridge) and sirsasana (head stand) all allow the abdomen to have more space, open and move toward the spine. This can relax the body and the abdomen to relieve pain and allow movement in the gut.

We are our own best advocates. I’m finding many medical opinions are just that and do not address my particular set of challenges that I must study and discover for my own body.

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Hello and welcome to Mayo Clinic Connect, @kayburnett. I think it is great that you have both explored additional ways to support your body as well as to share what has worked well for you with others. That is truly the essence of Connect!

Had you been practicing yoga prior to finding the implementing these poses to support your body's need?

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