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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@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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Oh, you sound just like me. I don't have IBS-C but a redundant, slow transit colon. My transverse colon barely moves. At the moment all I eat is soft fruit and vegetables, eggs, rice and some fish. I can't eat alot in one sitting so graze throughout the day. I have list about 13 kg. My colorectal specialist put me on prucalopride with my laxitives which has done nothing. Ten days with a small result but I think it is only because I doubled my laxatives on the 8th day. I think I want surgery but I'm concerned I am concerned that maybe I am not bad enough.

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@katiaserra .. Could you tell us what foods you are eating when using this Meal Plan.. examples of what meats, examples of what dairy, examples what fiber.. what vegetables, what fruits.. How much liquid and what liquids..

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@ken82 hi ken, the meal plan was working out how much protein, carbs and fats I needed to intake as well as a minimum of 28g of fibre everyday. I’ve been following a meal plan like this on and off for about 6 years but most recently 8 months continues. I’ve always had constipation my whole life but not to the extremes of what I recently experienced. Bloating and constipation were the first symptoms and then following extreme nausea and abdominal pain to the point where I was hospitalised. Yes will do, fingers crossed on my biopsies!

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@katiaserra Please tell us more about the Meal Plan of the Training Coaches.. How long have you been using this Meal Plan.. and did you have these symptoms (which symptoms occurred first) before going on this Meal Plan? Let us know what your Specialist says..

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@gibssy174

Hello , I am 27 years old male, very athletic build and does regular physical activity, but i have always had this problem of bloating and sense of incomplete evacuation and constipation since i was 18 yrs old, many of the consultation ended up describing it as irritable bowel syndrome and prescription of laxatives and fibres which didnt help at all. But I recently underwent colonoscopy and was diagnosed with redundant sigmoid colon and they say I have to have a surgery to improve my symptoms. Being young and the sole bread winner for my family, I am devastated. I am ready to undergo the procedure but I am being informed that the result is not guaranteed and there may be worsening of symptoms. I am lost, if anyone out there with similar problems post or pre surgery please do share ur views to help me out...thankyou

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Hey there, I’m in the same boat as you. Have had multiple symptoms the same as yours and has not emptied my bowel for 28 days was hospitalised 3 times within this period from pain and the concern as to why I hadn’t gone. I had a colonoscopy 2 weeks ago and was diagnosed with a redundant sigmoid colon. I see my specialist next week to get all of my results as they also found some polyps which they needed to biopsy. I’m only 24 years old and I’m also extremely physically active and follow a meal plan advised by my training coaches.

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@jack222

Hello Jayne,

I was diagnosed with a tortuous colon, earlier this year,
after many tests (to rule other things out), and *finally* a colonoscopy.
My doctor did not use the phrase "redundant".

My GI doctor recommended a low FODMAP diet,
five months before the procedure, and strongly reminded me after the colonoscopy,
that it was important to continue the diet.
So I might have been on the low FODMAP diet for a bit longer than you.

The worst part of the tortuous colon for me
was the pain part, as food travels through the gut.
That would keep me up at night, affecting sleep
so the next day's focus and productivity were affected.
I've lost weeks to this issue, too.
Also, with pain, if doctors suspect a mystery GI issue,
you have to be *very* careful with pain relievers.
(Ex. aspirin can worsen ulcers, etc. The Mayo clinic already has an article on this)
This is really important, until they can figure out the issue.

I *believe* the condition caused both sharp pains and dull aches,
for several years, which made diagnosis by my general practioner difficult.
Ultrasounds came up negative, but I think all doctors should do this,
to rule out other things. The pain wasn't that bad, at first, so I just tried
my best to ignore it.
As the pain got worse, and was making me miss a lot of work, in late 2018,
this was when I started really trying to get an answer why the pain was there.
I also had mild constipation, most days, in those months, but it doesn't sound like it was at the OP's level.

***The single most important thing my GI doctor has done,
was encourage me to see a psychiatrist.***
This was more important than even the diagnosis!

Because the psychiatrist prescribed an earlier type of drug,
called Amitriptyline. It's an antidepressant,
but it also attacks the enteric nervous system (the ENS, it's in your gut).
The first night I took it, I was knocked out for about 12 hours, (on a 25mg dose).
Later, my psychiatrist told me this was a *strong* reaction, to such a low dosage.
but the next morning, the pain level was halved (4-6/10 => 0-3/10), and more importantly,
the *areas* of pain shrunk down to ~70-90% of the original pain area.
Basically, I could function again, for most days of the week.
Enteric nervous system and amitriptyline, seriously, look them up.

I believe the best treatments could be related to
what caused the tortuous colon in the first place.
I have suffered from depression, anxiety, sleep issues, for many years,
but at this point, it's like the chicken and the egg.
Was the chronic pain the stressor to help cause the mental health and sleep issues
or was it the other way around?
I don't know, but I know Amitriptyline helped me get my life back.

Again, my constipation doesn't sound as bad as what you are going through, Jayne,
but I think with constipation, if the muscles in the gut
randomly tighten the wrong way around one (of our too many) bends in the colon,
this could cause hard-to-predict constipation or uneven absorption of water.
In theory, helping the nerves *around* the gut, from overfiring,
may help avoid as many muscles over-tightening, which could help reduce the chance
of constipation around the bends of a tortuous colon.
BUT I AM NOT A DOCTOR.

For the low FODMAP diet, or diet in general,
(or what happens after I put stuff in my mouth),
here are my thoughts:

---It is more important to eat *something* than to religiously follow such a
restrictive diet.
(Ex. Garlic and onions are not allowed in the diet,
but they are used in small concentrations in many seasonings in many foods).

So I'll eat food with *tiny* concentrations of unallowed ingredients,
not on the low FODMAP diet, in at least one meal of the day, as a cheat.
When I first started following this diet, I found I wasn't eating *enough*,
because I was so afraid of what I could *not* eat...
New food (with fiber) and water can help push the old food through,
so make sure you are eating enough to begin with. But still remember moderation.
My grandma was kinda right...

It's much better to think positively, about what you *can* eat, than what you can't.
So you can proactively find *more* meals to eat, for a more diverse diet.
To show you, I will first list what I regularly eat/drink, before the nono's:

------Fresh baby spinach leaves daily (*small* amount of leaves as a stabilizer, if necessary)
===>>> regulates amount of fiber (remember, not too little, not too much).
Keeping a paper towel inside the plastic box helps them last longer.
Also, the "fresh" part makes it easier to inspect the food, for bad leaves.
I bet some folks use kale, the same way. The dark leafy greens are healthy,
but some of the most difficult vegetables to clean effectively (i.e. remove pesticides or excess fertilizer (fertilizer which could still be poop)).

------Small daily amount of almonds or peanuts
===>>> I think *chewing* tough foods more thoroughly can help avoid pain, later on. Mechanical digesion, right?
But to be fair, I think some folks on the low FODMAP diet avoid nuts entirely, just to be careful. For me,
they are just too damn healthy to quit.

------Meat. A lot of meat is allowed on the low FODMAP diet.
I like baking fish or grilling chicken. No breading, of course, with this diet.

------Eggs

------Pedialyte or some electrolyte solution. Frequently.
===>>> I can't stress this one enough. Drinking water seemed to be the only
easy way to avoid pain, for me, for months. A colon with extra bends means
that water can get absorbed *too quickly* by the colon, causing portions of the stool
to harden earlier on in the tract. This is bad. Try to drink plenty of water
*with* the meal, not all at once, before or after the meal.
Sometimes, I sip a watered-down broth, just to be safe.
Beef broth has enough protein, for it to be worth it.

It is important to note, in most cases, as long as you don't have high blood pressure (hypertension),
it is safer to consume *too* much salt, than too little,
within reason (less than 7g / day). Healthcare Triage (on youtube) has at least two videos about salt. This doctor and his researchers are thorough.
The above opinion of salt, specifically sodium, is still contended.

But "Today I Found Out" (who does excellent research, especially if Daven
Hiskey is involved) agrees with the Healthcare Triage doctor, Dr. Aaron Carroll,
about salt in their youtube video, as well.
***Reading research studies is the best way to be sure though.

Suffice it too say, I listened to everyone saying:
"Drink more water" and
"Eat less salt"
But I think following these two pieces of common advice,
lowered the salt concentrations in my body, to dangerously low levels.

Find a brand you like, (for me, it was Pedialyte) then try to get the
powdered form of it, to hopefully save money.
I think the correct understanding of salt/water intake
in the GI tract is a critical point for people who have a tortuous colon,
but I don't want to get too far off topic.
Just make sure the brand has some *potassium* in it, not just sodium,
and that the solution is not *too* sugary.

Here's what I had to limit:
------Although many cheeses are allowed on the low FODMAP diet,
I had to reduce cheese consumption in order to help prevent
constipation.
------Although potatoes are allowed, I shouldn't eat too many potato *chips*.
It's convenient, but the grease, the lack of nutrition or fiber doesn't help.
------Greasy foods, in general. I use some olive oil in baking,
but honestly, that yellow/orange grease is the stuff I'm limiting.
It helps avoid the most common issue (acid reflux) in the *upper* GI tract,
but I think it also helps me in the intestines, too.
------Sugary foods / Acidic foods. (Ex. Soda, orange juice, etc.)
High fructose corn syrup is in a lot of things, but you gotta avoid it
in the low FODMAP diet.
------Apple juice is in a lot of other juices! I drink a *small* amount of
cranberry juice, just to get some vitamin C naturally, but to get it, without apple juice
and low sugar, in the US, I have to go for a diet Oceanspray cranberry juice
------Absolutely no Belvita breakfast bars. For some reason,
I consistently had discomfort, no matter how well I chew them...
Once I ate at least 3 or 4 of the packets (12-16 bars), and I was on the floor
in pain, unable to walk. Lots of sugar from syrups, and hard grains...

*Walking* and light physcial activity helps!
It really does.

This post was probably too late to help with your decision, Jayne,
but I hope it helps someone else later.

The low FODMAP diet is so complex, with the diversity of foods on/off the list and the *amount* of a certain type of food allowed,
that I am probably going to have to develop a meal plan soon, to reduce stress and for my safety.

Thanks,
Jack

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Thank you so much! I was recently diagnosed and was in terrible pain, bloating, the big D, the big C, gas etc. Even passed out twice and busted my head open. I used to take Amitriptyline to sleep so asked my doc to change me back to it and I have had such a lessening of symptoms in just a few days. TMI- but one solid poop instead of 6 or 7 weird ones is like manna from heaven. Again, thank you so much and I've even been sleeping better.

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@tiss

I had the same diagnosis re long, redundant , twisty colon and had awful constipation for my entire life. Colonoscopies were a nightmare back in the day when you were lucky to get a Valium. I am 62. 2 1/2 years ago I had a bowel obstruction from a cecal volulous and had to undergo emergency surgery (right hemicolectomy) to remove all of the ascending colon and then some. About 2 feet. It's been a long, hard recovery but with a good doctor, I've done pretty well with the bowel problems. Have been constipated twice since surgery. My colon had a rotated cecum-- rare, congenital bowel malformation that no test can detect unless you obstruct. The surgery itself is an awful recovery but, I'm grateful to be alive since the mortality rate for a cecal volvulus is high. I don't know if the rotated cecum has anything to do with the colon being extra long and twisty.

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I wonder if my post-depression baby birth resulted in shorter me and normal colon! Just a thought!

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@shayshay

I was told I have a tortuous colon, and I have severe chronic constipation !

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Hi @shayshay and @key, welcome to the Digestive Health group. Fellow members @carcar @mel1987 @cat4cards @giango87 @learningeveryday and others share their experiences with pain and constipation in this discussion.

@shayshay, have you found anything that helps with the pain?
@key, having unresolved pain really limits one's quality of life. Have you considered going to a pain management clinic?

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@shayshay

I was told I have a tortuous colon, and I have severe chronic constipation !

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Causes back pain too.

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