Anyone else have a Redundant / Tortuous Colon?

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

I was just diagnosed after a painful colonoscopy. Unfortunately, the doctor didn’t stop to talk aboutit so I am doing my own research. For the last several years, since my last coloscopy, I have had episodes where I cannot relieve myself then it feels like I am going to pass out, followed by a drop in blood pressure with cold sweats. These episodes take up to 30 minutes to finish and I have to lie down afterward. I am wondering if they are related. I certainly appreciate everyone’s experience and input.

Welcome to Connect, @amyvb @jack222 and @lesliedenny. I’d like to invite @tracy430 @thull @bjs4984 @onaquest to this discussion as they might have more insights about your symptoms. You can read about their experiences with constipation in these discussions:

– Colon Resection for Diverticulitis and Chronic Constipation https://connect.mayoclinic.org/discussion/colon-resection-for-diverticulitis-and-chronic-constipation/
– chronic constipation https://connect.mayoclinic.org/discussion/redundant-tortured-colon/

I also found this one published study about "The correlation between diverticulosis and redundant colon” which might interest you. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5635100/

I recently had colon resection for diverticulitis. Since then, I have no urge to have a bowel movement unless I take Linzess and Milk of Magnesia. My surgeon disregards my concerns and I'm terrified that if these things stop working, I'm going to end up in the ER. I've lost a lot of weight and I didn't have a lot to lose. I drink a lot of water. I try adding more fruits and vegetables. Nothing works. I have zero motility. At times I'll get bloated to the point that I don't want to eat and need to take Gas-X, but honestly, this is no way to live. This surgery was supposed to "give me my life back". It hasn't.

How long ago was your resection? It can take a long time to heal from this surgery. What part of the bowel was removed and how much? I'm so sorry you are going through this. I had a resection (see my story above) and it took a good 18 months to get some sort of management going on. I've taken magnesium every day 800-1000mg for chronic constipation for 25 years. My constipation is now under control since my surgery 2 1/2 years ago.

My resection was 11 weeks ago today. I had 7 inches in total of my sigmoid and descending colon removed. I can count on one hand the times I've had to take laxatives in my life. Constipation was only an issue for me in the weeks after my daughter was born and that resolved on its own. I actually was seeing my GI and internists for issues I was having with frequent bowel movements before I had my surgery. Since I had a diverticulitis flare that wasn't resolving with antibiotics, I assumed that the inflammation was causing diarrhea. Now I'm at the opposite end of this with severe constipation. My surgeon and GI are both of the impression that this is not permanent. I have so much discomfort on a daily basis, even 11 weeks feels permanent.

@tracy430
You are fresh out of surgery. Please be patient with yourself. I know it's horribly uncomfortable! It can take a full year to recover from a resection. My first 18 months were spent with diarrhea and/or constipation. Took a long time to get a handle on what I could eat, and how to manage the discomfort and flare ups. Your body has been traumatized and it is trying to figure out how to compensate for the loss of the part of your colon, and also the trauma. Remember that your intestines are still very inflamed and not happy. Eat things that are easily digested-- very small amounts at a time. Yogurt, scrambled eggs, Ensure-- very soft stuff so your intestines don't have to work hard. Low fiber at this point. I also take a probiotic Align every day. I don't know if you are on Facebook but I'm in a wonderful, closed, private group for colectomy patients. I get the best advice from that group that you won't hear from doctors. It's amazing how clueless doctors are about telling us how to help ourselves after this type of surgery. The name of the group is Post colectomy--the roller coaster of debilitating discomfort and pain. Highly recommend. Also, magnesium capsules may help. I take it every single day. I use nature's way magnesium complex. Good luck and please let me know how you are doing. Ask any question at any time. I feel for you! I am 2 1/2 years out from my surgery. Hang in there-- it will get better!! ❤️

After my 4th surgery this year, which ended up being a Deloyers Procedure, one of the things the surgeon recommended if I needed it was Senekot. I came out of the hospital with very consistent diarrhea so it was not needed. After about 4 weeks, things started firming up and I was feeling a little bit of discomfort, so I took some and it did help. Not nearly as harsh as a laxitive. I am also doing a yogurt probiotic daily as I am not digesting pills very well. All the potassium pills they gave me in the hospital came out in the toilet completely whole days 3 & 4 post discharge. Freaked me out, but at least I knew small hard things were making it out.
Still being careful, eating easy to digest foods, eggs, pancakes, applesauce, etc and drinking high protein Boost. But if I start feeling like it is getting hard to go I will take the Senekot. I hope you feel better. And I am now 7 weeks post Deloyers procedure.

After my surgery, I also had what I believed was magnesium coming out whole. It freaked me out as well. I had diarrhea for the first day and a half after surgery and since then I've been constipated. I haven't tried the Senekot yet.

Thank you so much. I am on Facebook and I'll definitely join the group.