Anyone else have a Redundant / Tortuous Colon?

I just signed up for this group on digestive wellness due to my redundant colon. I see your comment was from over 3 years ago so you are probably no longer a member of the group. Burt if you are, please reply. If there are others with a redundant, tortuous, elongated or "voluptuous" colon, please reply.

I had 4 colon surgeries in 2019 & 2020.(Was supposed to be 2, but they couldn't get the colon to heal back together. )Had 3 different colostomy sites, then an illeostomy. Two weeks ago wound up in the emergency room/hospital with severe abdomnal pain, though i had had a follow up colonoscopy 6 months before and my surgeon said I was healed. Now they say it was tortious--that I have so much scar tissue inside the intestines can get caught on the scar tissue and twist on itself and this will be an ongoing problem. Dr. said not really much that can be done to prevent it but when I asked about diet gave me a FODMAP handout that is not very comprehensive.
I had thyroid disease most of my life so not really familiar with constipation--usually moved my bowels 4-6 times a day all my life. After thyroidectomy I had occasional constipation but fixed with drinking coffee or V8, or eating spaghetti sauce. When they told me I was pre-diabetic I learned to control my blood sugar with diet.
Unfortunately, this FODMAP diet is contrary to sugar controlling diet. I did the "white elimination"--no white bread, potatoes or rice. Lots of high fiber whole grains. Now they want me to stop eating whole grains, nuts and seeds, salads, dried fruits, mushrooms, many vegetables I have eaten regularly. I'm in process of sorting out what I can and can't eat and how to cook. I stopped eating salt 50 years ago--don't use it except occasionally for sore throat gargle. Don't use sugar. Put agave in tea or coffee. Eliminated high fructose corn syrup about 15 years ago. They recommend pureeing most vegies--I LOATHE soft food--like my vegies raw or al dente. Allergic to fish and eggs. I usually only ate twice a day--now it says 6 small meals a day--this is WAY too much time spent thinking about food and my bowels. Looking for others dealing with this and how they do it?

I just signed up for this group on digestive wellness due to my redundant colon. I see your comment was from over 3 years ago so you are probably no longer a member of the group. Burt if you are, please reply. If there are others with a redundant, tortuous, elongated or "voluptuous" colon, please reply.

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

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

Hello @tonytenor and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on redundant colon to help you connect with others who have some of the same experiences, potentially.

Members such as @jcarndt @darcystaples @lasirvent and @tropicbev may have some additional ideas to share given their history.

One thing that I immediately thought of with regard to your concern with weight gain is if you are doing cardio alone and/or the same type of cardio, it may be benefitting you mainly from a heart health standpoint and not as much from a weight loss/maintenance standpoint. Have you tried incorporating some weight exercises to trick your body back into weight loss mode?

Hello! My name is Tony. I was Dx with a redundant colon back in 2013. Things have gotten progressively worse over the past nine years. Currently I have severe bloating, abd pain, constipation and weight gain. I have a high fiber vegan diet and exercise daily - usually power walking 4-6 miles per day. Has anyone else, with a redundant colon, experienced an issue with weight gain? The bloating and abd pain is bad enough, but to now have a weight issue is really quite distressing. Any thoughts?

I’ve been taking it for a month. And yes it keeps you home most of the morning. Also if I take it 4 days in a row, I get some nausea so I switch it up with herbal lax from shackle. If I get backed up due to diet,or lack of water I get set back and have pain and exhaustion.good luck

Hello @tonytenor and welcome to Mayo Clinic Connect. You will notice that I have moved your post into an existing discussion on redundant colon to help you connect with others who have some of the same experiences, potentially.

Members such as @jcarndt @darcystaples @lasirvent and @tropicbev may have some additional ideas to share given their history.

One thing that I immediately thought of with regard to your concern with weight gain is if you are doing cardio alone and/or the same type of cardio, it may be benefitting you mainly from a heart health standpoint and not as much from a weight loss/maintenance standpoint. Have you tried incorporating some weight exercises to trick your body back into weight loss mode?