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Anyone else have a Redundant / Tortuous Colon?

Digestive Health | Last Active: Nov 5 4:01pm | Replies (1097)

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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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Replies to "Hello Jayne, I was diagnosed with a tortuous colon, earlier this year, after many tests (to..."

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.

I know I'm late to the game here, I just found this site. As I'm reading through these posts I'm lying flat on my back in bed, dying, my pain is so horrendous. This is a three-day stint which is not unusual. Sitting is always uncomfortable for me . When I drive my seat is leaned way back. Wearing jeans or, anything around my waist will eventually lead to Pain by the end of the day. Bending over forwards, nope! I am otherwise a healthy, very active , mother of five , ages 40 to 22 years old, grandmother of five! 59 years old and for my whole life of emergency room visits for abdominal pain, I was never diagnosed until last year with a redundant intestine. This, was after I went to the emergency room and was hospitalized immediately. Nothing they gave me for pain helped. They say, narcotics do not e a s e the pain for this condition. Of course, the doctor recommended a colonoscopy but, he said, you just had one last year and it was inconclusive because they said that you were not cleaned out enough. I promised him that I did everything exactly how I was supposed to do on my last colonoscopy. He suggested, that I did two cleanings right in a row! I had to agree with him, I needed to find out what was going on with my stomach! I will say this without sounding disgusting, I could not believe how much waste was in my stomach!! Two nights in a row! Psychologically, if you suffer this pain and discomfort, and bloating, it can wear on you. Really, wear on you. I have found that being grateful for the littlest of things in my life, the beauty of nature, trying to stay in touch with my grandchildren via FaceTime , it's hard to put on a happy face with them when I'm having an episode. Currently, I have no insurance. I live in Florida. The doctor in the hospital recommended I follow up with the doctor who did they colonoscopy so I called the office to set up an appointment, I knew I would be paying cash I figured probably in the hundred dollar area. The woman was very Curt when she let me know that the initial visit fee was $275 no it's ands or buts about it, no payment plan no nothing. So, my life continues with my general practitioner trying to figure things out. My general practitioner, I might add, is a different doctor every time I go there so, there is no relationship building, no ongoing, effective, communication. I have to tell my story over, and over, and over again. One of the doctors who, I happened to see many times, and once after I was hospitalized with a severe attack, said the first colonoscopy was inconclusive. He was thoroughly convinced that my whole problem was constipation nothing more. I stood my ground, I know my body, I told him there is something in there that is not right. Wow, I know I've rambled, nobody understands what I'm going through or the severity of the pain and how it just overwhelms your whole mind and being. This too shall pass. I am, on my good days, a very upbeat, happy, funny, loving human being. I feel very alone in this struggle... I just want this never-ending pain to leave me. Well, if you took the time to read this far, thank you!

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?

Thank you so much for your post! I have been struggling for three years with gi symptoms of nausea, weight loss, diarrhea, constipation and abdominal pain. Removed my gallbladder. Then a partial small bowel obstruction that thankfully was resolved without a resection. Diagnosed with slow transit digestive system. Before any of this started, a colonoscopy and barium enema showed a redundant colon and no doctors I saw attributed any of my issues to it. I was referred to a gi who specializes in motility issues and he put me on medication and I felt good for a while until last summer when the pain started. He wasn’t too concerned. On my own, I tried the low FODMAP diet but it made things worse because I think I wasn’t eating enough. He told me to stop. Pain got progressively worse with 6 ER visits in 7 months. So in February, he did a colonoscopy. The prep didn’t work completely which was disappointing after all that but he feels my pain is coming from the tortuous colon, which he said “looks like a roller coaster”. So why did no one consider this before? It’s not like I didn’t go to competent doctors. So his treatment plan is to not become constipated. Wow! I could have figured that out without a medical degree! Worse case would be to remove parts of colon. Worst case, remove entire colon. So, I actually got more from your post than from him. Doctors just seem to only want to throw medication at you. I have asked him repeatedly about diet and other methods and get no response. Ironically, after the first of the year, the pain just went away. No idea why. I debated canceling the colonoscopy, but during one of my ER visits, a C/T showed possible IBD. Then, two weeks ago I had my ovaries and tubes. A few days ago, the discomfort in my left side has returned. Not really pain like before but a definite ache. Again, no idea why. Not constipated. No change in diet or meds. So upset. Going on vacation in a week. Afraid the colonoscopy and/or surgery may have stirred things up. I have asked him before about amitriptyline but he won’t prescribe. Wanted me to see someone in pain management. The last thing I want is another doctor. Sorry this is so long.

Thank you for the detailed post. I’m sorry to hear of your struggles. Many are very similar to my own 🙁 After so many years of chronic constipation and severe gas and bloat and making lifestyle changes and begging for diagnostics, I had my first colonoscopy and found out I have a tortuous colon. It feels good to have an answer and I’m hopeful to connect with a specialist who appreciates how bad symptoms can be and wants to support a treatment plan for me. If anyone on here has specialists to recommend, whether they be for GI, dietetics, sleep therapy, pelvic floor therapy, mental health, or any others I’m not thinking of, I’d love to hear your recommendations. I also would love recommendations on resources. Hugs to all 💜