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

Liked by gibssy174

@kanaazpereira

Hi @tracy430,

It sounds like you’ve been through so much! I’m so glad you’ve joined this group, and was wondering if you had an opportunity to view this Mayo Clinic Connect discussion:
– Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/
It’s an incredibly informative conversation, where fellow members have shared their experiences, insights and tips about life before and after ostomy.

Another Connect discussion that I would really encourage you to read through is, "Three months after colon surgery” https://connect.mayoclinic.org/discussion/three-months-after-colon-surgery/ where you will meet @joyce1 @starrlight @sallyg @nannytart @travelgirl @swatson. I’d also like to bring in @maet @frane1939 @lamerex4 t see if they might be able to share more about colon resection and diverticulitis.

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Good evening all
.i did stapled hemorrhoid surgery in indian on January back to Africa started having serious bleeding and lump coming out.
Now back to Indian after serious of test MRI DEFECATION. COLONSCOPY.
NORMAL COLON WITH TORTUS COLON.
EXTERNAL BLEEDING HEMORRHOIDS, AND INTERNAL HEMORRHOID AGAIN AND RECTAL MOCUSAL PROLAPSE.
THAT I NEED SURGERY AGAIN LIFE HAS NOT REALLY BEEN EASY.
WHAT UR ADVICE AGAIN ON THIS M.

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@giango87

Hello, i prefer with yogurt granola and fruit, but in smoothies i prefer to put it at the end so it is not too grind….

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Hi @giango87 and welcome to Mayo Clinic Connect. Thank you for for providing the useful information about the seeds. How long ago were you diagnosed?

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@mothercare1990

Good evening all
.i did stapled hemorrhoid surgery in indian on January back to Africa started having serious bleeding and lump coming out.
Now back to Indian after serious of test MRI DEFECATION. COLONSCOPY.
NORMAL COLON WITH TORTUS COLON.
EXTERNAL BLEEDING HEMORRHOIDS, AND INTERNAL HEMORRHOID AGAIN AND RECTAL MOCUSAL PROLAPSE.
THAT I NEED SURGERY AGAIN LIFE HAS NOT REALLY BEEN EASY.
WHAT UR ADVICE AGAIN ON THIS M.

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Good morning @mothercare1990 (Good evening since you are in Africa) and welcome to Mayo Clinic Connect. I am so sorry to hear about your struggles after stapled hemorrhoid surgery. You came to the right place. There are several here that have been through similar obstacles including @gibssy174 @oceanone @virginia44 and @tiss. We members on Connect are not medical professionals and don't give medical advice, but can certainly share our experiences. It must be very difficult to travel so far to get medical care. Are you considering going through with the surgery again? Have they suggested any alternative solutions?

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@amandaburnett

Good morning @mothercare1990 (Good evening since you are in Africa) and welcome to Mayo Clinic Connect. I am so sorry to hear about your struggles after stapled hemorrhoid surgery. You came to the right place. There are several here that have been through similar obstacles including @gibssy174 @oceanone @virginia44 and @tiss. We members on Connect are not medical professionals and don't give medical advice, but can certainly share our experiences. It must be very difficult to travel so far to get medical care. Are you considering going through with the surgery again? Have they suggested any alternative solutions?

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Yes am back to Indian, I have done a lot of test and all that required.they said I need open surgery for external and internal hemorrhoids that is bleedind. And was surprised to here rectal mocusal prolapse. which they said all the procedure will be together.
Was better before I did the first surgery which I think was mistake from first surgeon and here nobody care about the health just business as usual. even when u asked question is horrible but am believing God that one will still have normal life and hoping the surgeon will be good this time.

Note Colonscopy:
EXTERNAL examination:large external hemorrhoid.
Colonscopy passed the caecum.
Scope withdraw and detailed evaluation of mocus done.
Tortus colon. No mucusal abnormality.
But scarrying from previous surgery noted in rectum.

MRI DEFECATION RESULTS.
Mild rectal mocusal prolapse with mimimal defecation.
While barium enema
Said mild colitis recto sigmoid which is normal in most cases.

I want to know if one can live a normal life after this. Surgery will be done after this whole virus problem.

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@amandaburnett

Hi @giango87 and welcome to Mayo Clinic Connect. Thank you for for providing the useful information about the seeds. How long ago were you diagnosed?

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Hi, about november last year, got a colonoscopy.

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I have just been diagnosed with Torturous descending and sigmoid colon. I have been experiencing abdominal pain for the last 30 years but after changing to a clean diet 5 years ago I no longer experience diarrhea.
6 months ago I started experiencing abdominal pain (feels like period cramps) with activity (walking, standing, chores). The pain is constant until I sit. If I don't sit, I get to the point where I almost pass out from the pain. I don't have any other symptoms other than pain but it limits my daily activities.
Have any of your experienced this kind of pain with movement? Also, what treatments are available that do not include long-term pain medication?

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@mel1987

I was diagnosed in 2010 with tortuous colon which was discovered during a routine colonoscopy. I have had very few problems until the beginning of 2019 when I began developing severe muscle spasms in my lower left abdomen and lower left back. I cannot think any other reason why these spasms would occur other than a result from the tortuous colon. I have also had severe constipation which I cannot find relief for. Has anyone else had anything similar happen?

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

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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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@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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@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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@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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