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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My problem is constant. I have a couple of BM in the morning and then by afternoon I feel constipated. Incomplete evacuation, they call it. I am trying everything and nothing works. It's pretty depressing. The gastroenterologist basically said "there is nothing you can do"...I take miralx and also smooth move tea. I don't know what else to try? Psyllium doesn't work.
As someone said "what works one day, it doesn't work the next". I drink tons of water. Eat lots of vegetables. Exercise a lot. what else to do?
After reading the comments here it seems that everyone has the same problem and there is basically nothing we can do.

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@hopeful2

I get the general impression that even gastro docs really don't want to deal with this issue. It is unrewarding for them. I read in one scientific article on google scholar that if pain is a significant symptom for the patient before the resection, it is likely that it will be also after resection and even possibly worsen. I do recognize that there are times when the patient has no choice because the disease has progressed to the point that there is a danger of perforation. That is a difficult lesson I learned from caring for my husband through all his illnesses and surgeries: the illusion that docs will have an answer for every condition or even a correct diagnosis. There is a bit of the wizard of oz effect going on in the culture of medicine. As one wise poster said some time back, we glean what information that we can from a provider and then move on. I am grateful that Mayo has made it possible to learn from all of you. One thing that I learned on this Mayo site that has really help me with gas is to do the abdominal massage. I also read that they use that in caring hospice situations. I started looking at hospice/ and constipation due to cancer because it is a serious problem in those situations. I have learned that even in these conditions, the issue of constipation is not fully addressed.

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"I get the general impression that even gastro docs really don't want to deal with this issue."
I agree with you. My first GI doc never even told me I had a redundant colon until I happened to read it on a colonoscopy report. Seven years and many scopes after I started seeing him. It took me a year to get him to admit it "might" contribute to chronic constipation.....I believe it is the main cause. For me at least. I've had two other Doc's recommend having my colon removed if I didn't want to deal with it anymore.
They were serious. The "wizard of oz" effect is right on the money. I could go on and on, but I'm sure you have experienced it all. At this point my problem is that I have to take so much stuff to keep things moving, that I'm stuck in the house most of the day.
Anyway, I'll stop whining and go take my Linzess now.
Excellent post, by the way.

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@notmoff

Your suggestion about adding tahini & applesauce to butternut squash sounds good to me. I've read that dairy can be constipating so I might replace the yogurt with hemp powder to get the protein I need. I've been relucatant to use acacia or psyllium fiber for fear I might not accompany it with sufficient water. I'd like to reduce my senna and Miralax usage.

Recently constipation has been less of an issue for me, maybe because several times a day, I've been putting about 1/2 teaspoon of chia seeds in the bottom of a drinking glass, adding about 1/4 C of water, stir with a fork to break up the seeds, wait about 15 minutes until they have gelled up and then stir in about 1 - 1/2 C more water and drink. If I mix them all at once, the seeds clump.

I enjoy the "sliminess" of steamed okra, but find it pricey. I haven't noticed how it affects my gut.

Thank you for the good ideas.

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Have you tried chia pudding? I don’t remember proportions, but it’s chis seeds, almond milk and maybe some vanilla. Put in frig overnight. It becomes somewhat like tapioca pudding, if you like that. I think it’s pretty tasty myself. Might have to give it a try again.

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@jcarndt

"I get the general impression that even gastro docs really don't want to deal with this issue."
I agree with you. My first GI doc never even told me I had a redundant colon until I happened to read it on a colonoscopy report. Seven years and many scopes after I started seeing him. It took me a year to get him to admit it "might" contribute to chronic constipation.....I believe it is the main cause. For me at least. I've had two other Doc's recommend having my colon removed if I didn't want to deal with it anymore.
They were serious. The "wizard of oz" effect is right on the money. I could go on and on, but I'm sure you have experienced it all. At this point my problem is that I have to take so much stuff to keep things moving, that I'm stuck in the house most of the day.
Anyway, I'll stop whining and go take my Linzess now.
Excellent post, by the way.

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Yes, totally agree. As I just found out at my apt on Friday, if it’s not a pill they can give, they are lost. Wouldn’t even discuss tortuous colon as being an issue. On my own again, except for all of you, to figure out how to deal with this.

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@kalbin

They did get me cleared out enough for the 2nd attempt at a colonoscopy, they just can't see the whole thing because of all of the loops.
During the barium enema, the Dr. still couldn't see that much of it and I literally heard him say "I don't what to do."
There has been a lot of time between these appointments. Nobody knows yet exactly why there's still blood in my stool.
It's almost like the whole tortuous colon is a rather unusual issue and nobody really knows exactly what to do with us, ya know?
May I ask what kind of softeners you use?
Thank you so much for your input!
-Kathy

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I’m taking a Senna Lax, made by Good Neighbor Pharmacy. I found them on Amazon.com. I’ve been ordering on Amazon because I’m dealing with chronic pain and am not out everyday. I can order online and get them in 24 to 48 hours. They work good and I’m figuring out dosage now. I’m taking 2 or 3 at night. As long as I drink enough water, I have movement every morning. If I do go more than a few days, I have a scrip for Lactulose from prior to colonoscopy I can use at 15 to 30ml once a day. I’ve only had to use Lactulose a couple times. Lactulose is a liquid, like cough syrup. It’s a prescription and I won’t be using it long term. As I learn what foods to eat and what to avoid, I hope to adjust softeners too. Are you drinking enough water? I’ve had a hard time drinking enough water in the past. Upping my intake during this has helped a lot and has become easier for me. I don’t always drink 8 glasses a day, but I get that and more with a combination of coffee, juice and water, etc. daily. I know that’s super important!
I think you’re absolutely right about doing what we can on our own to live with these conditions. Doctors do what they can and it’s important to know what we’re dealing with, but much of our health is how we advocate for ourselves. Learn what you can do with diet, exercise and support! I also use stuff like meditation and distraction techniques for chronic pain. I can apply that to stress from other diagnosis! Stress works against me making improvements with physical health! Feel free to reach out!

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@jaleh
@notmoff
Have you tried adding a stool softener(Colace) or a psyllium fiber (Metamucil) in the mix ? Are you are taking senokot tablets and Mira lax consistently every day? If those combinations are not working after giving it a good try, vaying the dosages of each, and being consistent, etc., then on to something else!

I found, as others here on MCC, that the OTC Prunelax works very well to get things moving without being too harsh. There are two different strengths sold on Amazon.

If I were to go to a stronger, but non-stimulating laxative, I would try Dulcolax Liquid.

The above regimens always work for me. Let me know how it goes after trying something different.

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@sallyw133

Have you tried chia pudding? I don’t remember proportions, but it’s chis seeds, almond milk and maybe some vanilla. Put in frig overnight. It becomes somewhat like tapioca pudding, if you like that. I think it’s pretty tasty myself. Might have to give it a try again.

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Thanks for the idea. I think I will start with this super simple recipe mainly because I don't have any almond milk. I may add a smidgeon of cashew cream to improve its consistency and then add chopped strawberries, which I do have.
1/4 cup chia seeds
2/3 cup water

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@clutch

@jaleh
@notmoff
Have you tried adding a stool softener(Colace) or a psyllium fiber (Metamucil) in the mix ? Are you are taking senokot tablets and Mira lax consistently every day? If those combinations are not working after giving it a good try, vaying the dosages of each, and being consistent, etc., then on to something else!

I found, as others here on MCC, that the OTC Prunelax works very well to get things moving without being too harsh. There are two different strengths sold on Amazon.

If I were to go to a stronger, but non-stimulating laxative, I would try Dulcolax Liquid.

The above regimens always work for me. Let me know how it goes after trying something different.

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To answer your questions, no I haven't tried a stool softener or psyllium fiber. And I don't use Miralax or senna consistently.
Thank you for the suggestions.
I will check out the Prunelax.
Interesting that I don't see prunes in Prunelax ingredient list. Apparently the active ingredient is senna, which I also don't see (or recognize the name of).

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Constant constpation can lead to Stercoral Ulcer. My wife has them , I can't find any answers accept Mira Lax once a day and Meta Mucil twice a day .It keeps her poop flowing Soft and Brown and includes frequent diaper changes . The only pain Med is maintain the right Diet that doesn't cause impaction and pain . Me I just eat a diet plan of approved foods list that was given to me by my Certified Licenced Holistic Naturo Pathic Doctor . Nothing prepared , bagged , or boxed . They can be raw or cooked and if I eat a little dirt that's OK TOO !
Just like MAMA used to make when I was a kid . Also cut out the salt and sugar get your tastebuds back . Don't try to live on just Meat & Potatoes & Cheeze . Three Quarters of my Plate or more is Green Veggy's with Beans & Chick Peas . Don't forget the Pro Biotics , Fermented Foods Kim Chi Etc . Limit or No Cow's Milk . A little Meat Protien adds to the flavor , I use only Spice & Herbs , Italian Herbs . Sage , Margerum , Cumin , Pepper , Curry Powder , Ginger , Turmeric , Both Raw or Dried ( raw is best )....
Now this don't work for everyone so watch what your doing . I say this works for me , and my Doctor / Dietitian worked with me to start out . MD Dietitians don't do diets the same as Naturo Paths Dietitians . You don't have to be a Vegan or Vegetarian . I also cut out Beef , Pork , Lamb ... I buy Raw Unprocessed Boneless Skinless Chicken Breasts , Raw Salmon , Tuna (canned) , Cod , and other Fish , Limit Shell Fish , Shrimp , Etc ....

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@clutch

@jaleh
@notmoff
Have you tried adding a stool softener(Colace) or a psyllium fiber (Metamucil) in the mix ? Are you are taking senokot tablets and Mira lax consistently every day? If those combinations are not working after giving it a good try, vaying the dosages of each, and being consistent, etc., then on to something else!

I found, as others here on MCC, that the OTC Prunelax works very well to get things moving without being too harsh. There are two different strengths sold on Amazon.

If I were to go to a stronger, but non-stimulating laxative, I would try Dulcolax Liquid.

The above regimens always work for me. Let me know how it goes after trying something different.

Jump to this post

clutch: I have tried everything. I go days that I feel great, then it stops. It feels like my body gets used to it and then wants it changed. I do Miralax and smooth move tea every day. I feel good in the morning after BM, then after a few hours I feel like sh.t! I did do prunes for a while but that didn't help either. What is prunelax? I don't how anyone can go for a day without having some kind of BM. I am thinking that I should go a major place like Mayo clinic to deal with this. It's overwhelming me and I don't like it.

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