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.

@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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I just googled Prunelx and it has senna, which smooth move tea does also(I do it every night). I did metamucil AND smooth move for a while. What it did was that I would have really good BMs but then I feel bloated and awful after a few hours.

Can you tell me what regiment you do every day? How often? I feel like my body gets used to something and then rejects it.

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@anne4u

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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Thank you for your reply and info! I appreciate hearing from people with the same type of circumstances.
I do drink a lot of water, actually 64-80 oz. a day at least. I have been on a weight loss program for a bit over a year and have lost about 90 lbs (so now apparently my colon doesn't fit in me anymore lol).
I know water is kind of boring, but maybe try a flavor with it like some lemon or lime?
I got an appointment to talk to the doctor but it's not until July 20! I just reminded them that I still have blood in my stool and asked if I should do anything else besides the laxatives and they said no. It's weird, but my health is very good except for that, so I'm lucky. I just don't want to become anemic. No signs though.
Does your chronic pain come from your colon problem or is that something else?
Best wishes! -Kathy

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Very sad to read the previous comments. Ive been there, finally diagnosed with the tortuous colon, after many gastro Dr's just kept telling me to take miralax. After being diagnosed, Dr. told me to eat rice and potatoes!! He put me on a prescription stool softener, a prescription for inflammation.
Instinctively I felt that his food recommendation didn't make sense, I went to a certified nutritionist and after meeting and discussing all issues, including IBS, she scheduled 6 meetings. I was given a folder with a very specific protocol of what to eat, menu's, smoothies with protein powder, and raw veggies and fruits, soups, softer foods. She added some supplements, and I have finished my 6 appointments with her.
After many a few months, I was able to stop the softener, but I do take an over the counter laxative/stimulant for incomplete evacuation. I am 81 yrs old and rectal muscles not up to par. I have a bowel movement every morning. I highly recommend finding a certified nutritionist.

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I have redundant colon and chronic constipation. I am currently on the highest dose of Linzess in the morning and Miralax and stool softener at night. I have diarrhea in the morning and cannot leave the house until many hours after taking the Linzess so I try to take the Linzess as early as possible (4 am or 5 am). That way, I am usually done by 10 am or so.
This works for a while then I ultimately become constipated again. When I am constipated, I have many gassy "break-through" bowel movements resulting in very little stool. My gastro doctor said this is because only small amounts of stool can make its way through my colon when there is a large amount of stool in the colon. I have pain in my mid left abdomen under my rib cage all the time. At first I thought it was from constipation and then I thought it was because I take too many laxatives but it really doesn't seem to matter - it's there all the time.
Then, when I am constipated, I have to take Magnesium Citrate to empty out. That is hard to swallow, literally.
I am on a high fiber diet in addition to taking Benefiber twice a day. I see a lot of people suggest chia seeds and am thinking of adding that into my diet. I eat lots of fruits and vegetables but never raw vegetables - too much gas pain. VERY little sugar or carbs. I have lost about 20 pounds since this all started last July (not intentionally). I do not want to lose any more weight.
Honestly, I am tired of living like this. I know it's not a death sentence, but it affects every aspect of my life.
I really appreciate this platform. Thanks for listening.

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@jaleh

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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@jaleh
Prunelax is an herbal, non-stimulant, supplement in tablet form. It is OTC and comes in regular and maximum strength. It helped me get regular when other supplements didn’t and many on Connect have tried it, successfully. It would not be for everyday use, but when things get sluggish and you need a big push, Prunelax comes through!

Easily accessible on Amazon. You might try it….nothing to lose! Let me know how things work out.

I

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@notmoff

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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@notmoff ,

The two active ingredients are dried Selena leaf extract and dried Plum extract.

The regular strength worked very well for me and I did not even use the full recommended dosage.

Let me know what you try that does or doesn’t work.

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@jaleh ,
An added comment on Prunelax:
Prunelax recommended dosage is 1-3 tabs before bed. Both times I have used it, I only needed 1 tablet. Once regular, I can pretty much stay that way with excercise, plenty of water, a good probiotic, and Colace caplets (2).

If the balance gets out of kilter, I’m right there on it to get back in rhythm, as I stated in previous comments.

Let me know what works, or doesn’t.

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Clutch...Thanks! I try anything. I'll give this a shot. I just don't understand my body, some days are good and others aren't and I can't figure what it is that makes the difference.

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@clutch

@jaleh ,
An added comment on Prunelax:
Prunelax recommended dosage is 1-3 tabs before bed. Both times I have used it, I only needed 1 tablet. Once regular, I can pretty much stay that way with excercise, plenty of water, a good probiotic, and Colace caplets (2).

If the balance gets out of kilter, I’m right there on it to get back in rhythm, as I stated in previous comments.

Let me know what works, or doesn’t.

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Clutch! What is Colace caplets? I just ordered Prunelax. I wonder if I should do Smooth Move tea AND Prunelax, they both have senna in them? So, you do Prunelax, Colace and probiotic? You are in as bad of a shape as I am. Sometimes I look at our countertop and all I see is poop stuff...(Miralax, Fiber, Smooth Move, Psyllium)...that's a lot of stuff I have. Now I'll add Prunelax. I'm becoming a collector!

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@kalbin

Thank you for your reply and info! I appreciate hearing from people with the same type of circumstances.
I do drink a lot of water, actually 64-80 oz. a day at least. I have been on a weight loss program for a bit over a year and have lost about 90 lbs (so now apparently my colon doesn't fit in me anymore lol).
I know water is kind of boring, but maybe try a flavor with it like some lemon or lime?
I got an appointment to talk to the doctor but it's not until July 20! I just reminded them that I still have blood in my stool and asked if I should do anything else besides the laxatives and they said no. It's weird, but my health is very good except for that, so I'm lucky. I just don't want to become anemic. No signs though.
Does your chronic pain come from your colon problem or is that something else?
Best wishes! -Kathy

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Congratulations on your weight loss! Wow, what an amazing accomplishment! You are obviously very dedicated to lose 90 lbs in just over a year.
Being new to tortuous colon myself, I’m also reading and researching what to do about it. Ideally natural solutions are best! I’m simply getting through the immediate symptoms as I make adjustments in diet and find what works. I have tried some flavored water and added lime and lemon as you suggested. I have an alkaline water machine and I like the flavor of the water. It’s just an adjustment like anything else. Sounds like you do plenty of water. I’m surprised it doesn’t help more.
My pain is from a few sources. I was diagnosed with fibromyalgia in 2003. It knocked me off my feet! I was on disability within 2 years of the diagnosis. I had severe symptoms and it took me years to make necessary adjustments to deal with them. I’m doing much better but have bad days. After an injury, I began having back pain. Years later I have some serious problems with nerve compression in my spine, degenerative disk disease, bulging disks, etc. I do what I can to cope with pain but have decided to look into some treatment options. I want to see if they will provide enough relief to get me moving more so I can start swim therapy and be more mobile. I’m at the point I’m pretty limited due to pain. I’m in the process of stopping pain medication so withdrawal is a factor in this. Now the colon diagnosis!
I’m optimistic! I incorporate modern medicine and a holistic approach to my treatment plan! Balance in everything! It’s a life style change!
I’d enjoy hearing how you’re doing and what you find to help. I’m happy to share what helps me!

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