1. < Digestive Health

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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sallyw133 | @sallyw133 | Jun 24, 2022

Had a virtual visit with a nutritionist/dietitian from my GI’s dept. She had more helpful advice for constipation than all drs I’ve seen combined! Actually took time to review my records. Asked me to go over what I
Eat and do in a typical day. Found out most things I was eating were making things worse! No raw fruits and veggies, especially salads and corn. No popcorn. No red meat. Fruit ok in smoothies as it’s blended. Watch high fiber food. All things easy to digest and move quickly through digestive track. No fiber supplements. Going to be hard, especially this time of year, but I’m willing to try anything!!!! I’ve been pushing all this stuff thinking it would help! I know some of you have brought up many of these before. Why haven’t my
Doctors? Makes me so mad!!! Just take another $1000 drug.

REPLY
1 reply
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jun 15, 2022
In reply to @tropicbev "I know just how you feel. I went on a vacation with a friend. We had..." + (show)
@tropicbev

I know just how you feel. I went on a vacation with a friend. We had this planned for a year and I kept thinking I'd get my constipation under control before we left. Wrong. I ended up skipping doses of Miralax and Linzess so I wouldn't be tied down to the bathroom all morning. After a few days it caught up with me and I was miserable for a couple days. Had to work everything around restrooms but my friend was understanding about it and we got through it.
Good luck. Try to have fun and relax.

Jump to this post

I just wanted to add that we are “supposed” to have a vacay as well….it’s only been 3 yrs…I’m looking forward & dreading I’ll be in bed the whole time. 😩

REPLY
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jun 15, 2022
In reply to @bgiddio "@sickofbeinsick1 Hi Tina. Know how you feel. Diagnosed with tortuous colon, insufficient pancreas, etc. But the..." + (show)
@bgiddio

@sickofbeinsick1 Hi Tina. Know how you feel. Diagnosed with tortuous colon, insufficient pancreas, etc. But the most exasperating thing is the IBS. So everyday is different, never
knowing what the day will bring, constipation, diarrhea, etc. Must wear pads every day just
brings on a whole level of emotional trauma.
I went to a certified nutritionist, and that's the only thing that has helped. I scheduled 6 visits, and I am at my last meeting on line. Her protocol has helped, smoothies, soft foods. When I
deviate from it, its trouble. Went to a friend's house and ate things I should have run from,
sooooooo, looks like I have to be very strict about what I eat and what I don't eat.
Dr's are taught meds, surgery. I highly recommend a good Certified Nutritionist. My primary Dr. actually recommended food allergy testing and the Fod Map diet. I think its all about the food we eat.
Good Luck!

Jump to this post

I agree totally….everybody is different, so it’s not a One Size Fits All….it’s been trial & error for me, I’m getting there…like you, I have slipped knowing I should a run too, but, we’re only human

REPLY
sallyw133 | @sallyw133 | Jun 13, 2022
In reply to @tropicbev "I know just how you feel. I went on a vacation with a friend. We had..." + (show)
@tropicbev

I know just how you feel. I went on a vacation with a friend. We had this planned for a year and I kept thinking I'd get my constipation under control before we left. Wrong. I ended up skipping doses of Miralax and Linzess so I wouldn't be tied down to the bathroom all morning. After a few days it caught up with me and I was miserable for a couple days. Had to work everything around restrooms but my friend was understanding about it and we got through it.
Good luck. Try to have fun and relax.

Jump to this post

After two days of not going, I ended up taking Motegrity, Colace and Miralax yesterday. Didn’t sleep well last night because I way overdid it with traveling, moving in to beach house and 5 grandsons arriving. Overtired. So I woke with awful migraine and then, apparently, I overdid the meds because I spent the next two hrs in bathroom! So now everyone is at beach. I’m laying in bed with ice on my head. Afraid to be that far from the bathroom. Omg! I can’t even imagine the reaction if grandma had an accident on the beach! Dealing with one of these issues is bad enough. Dealing with two. Well, there just aren’t words.

REPLY
tropicbev | @tropicbev | Jun 13, 2022
In reply to @sallyw133 "I started the 20 mg of Celexa because that was the only new thing I came..." + (show)
@sallyw133

I started the 20 mg of Celexa because that was the only new thing I came away from the new gi with. Took in am because it can cause insomnia and I already have trouble sleeping. Ironically, made me really tired and nauseous. Not few hours of sleep. Next day, diarrhea started so that night cut normal meds in half. Next day, could not leave br for hours. Well, I am no longer constipated! Unfortunately, we are leaving for a 10 drive to the beach in 3 days. This is not a good thing. Plus, I feel awful. So, next day I cut in half. Little better. But now, two days later, I’m in motel, half way to beach, second day, no BM. Couldn’t take much because likely we will be stuck in traffic. I have been looking forward to this vacation with my son and daughter and 5 grandsons for 3 years, and I’m probably going to feel like crap the whole time. I am so sick of this whole thing.

Jump to this post

I know just how you feel. I went on a vacation with a friend. We had this planned for a year and I kept thinking I'd get my constipation under control before we left. Wrong. I ended up skipping doses of Miralax and Linzess so I wouldn't be tied down to the bathroom all morning. After a few days it caught up with me and I was miserable for a couple days. Had to work everything around restrooms but my friend was understanding about it and we got through it.
Good luck. Try to have fun and relax.

REPLY
2 replies
bgiddio | @bgiddio | Jun 13, 2022
In reply to @sickofbeinsick1 "OMG! You are experiencing the same as me…I’ve been on Mayo for SOME time. I’ve seen..." + (show)
@sickofbeinsick1

OMG! You are experiencing the same as me…I’ve been on Mayo for SOME time. I’ve seen at least 6 different GI’s. After 5? colonoscopies…the 1st one in2010, the only thing they say is “long tortuous colon w/ diverticulosis.
I’m 5’2”, my normal weight is 130 - 135. I weighed 170 when it was at its worst. Luckily, I got in touch with a GI Dr. I’d never seen. He prescribed me “SurePrep”…it’s what they give to clean you out b4 scopes. It worked, sorta, I had 2 blowouts. The pain in my SWOLLEN gut was unbearable. But that was the beginning…I know this may seem off topic, but I had a metal hip for 16 yrs. 1 day I woke up & all I can say is I was “out of it”. My hip hurt, so I laid back down. I didn’t come out of whatever you wanna call it for over a week..(I have no recollection of what happened during that time). I was in bed, I have 2 kids to get up, get fed, & take to school. When I came to, I went straight to orthopedic dr. & he tested for metal ions…of course I had plenty. Had revision, pain subsided & got back to 130 lb. That was in 2020..pain is back, I only eat soft food & all GI’s say same, tortuous colon & diverticulosis…in fact, a month ago I went to a NEW GI, I had previous reports & scopes. He flipped thru them & said “well, it looks like you have done everything there is to do, I can’t help you”. He gave me amitriptyline 10 mg. Sometimes it helps sometimes it doesn’t but I’ve been on a soft diet for 4 years !
I’ve cried myself (in my room, alone) so many times. I wish I could just go hospice. I hope you have better luck than me. ALSO, make sure you don’t go to the colonoscopy places…they’re everywhere, & that is Literally all they do.
Prayers & best wishes

Jump to this post

@sickofbeinsick1 Hi Tina. Know how you feel. Diagnosed with tortuous colon, insufficient pancreas, etc. But the most exasperating thing is the IBS. So everyday is different, never
knowing what the day will bring, constipation, diarrhea, etc. Must wear pads every day just
brings on a whole level of emotional trauma.
I went to a certified nutritionist, and that's the only thing that has helped. I scheduled 6 visits, and I am at my last meeting on line. Her protocol has helped, smoothies, soft foods. When I
deviate from it, its trouble. Went to a friend's house and ate things I should have run from,
sooooooo, looks like I have to be very strict about what I eat and what I don't eat.
Dr's are taught meds, surgery. I highly recommend a good Certified Nutritionist. My primary Dr. actually recommended food allergy testing and the Fod Map diet. I think its all about the food we eat.
Good Luck!

REPLY
3 replies
sallyw133 | @sallyw133 | Jun 12, 2022
In reply to @sickofbeinsick1 "The best advice I have is small portions, skip a day (no solid food) but plenty..." + (show)
@sickofbeinsick1

The best advice I have is small portions, skip a day (no solid food) but plenty fluids, meal replacement drinks, eggs, potatoes, just about any fruit, try smoothies or shakes (as a treat). Soup! as long as it doesn’t have big chunks of meat. Water, water! It’s not fun, but it’s better than pain & suffering. I’ve been working this out for 4 yrs…I NEVER thought I’d skip a day of food in my life….but there it is…you work up to it gradually. It’s helped me. I could not go on with the pain any longer. So I took matters into my own hands. Unfortunately, everybody is different…have all the V8 or prune juice you want (or can handle)…a little vodka in V8 can’t hurt either…(just for a cocktail on vacay) lemon in tea.
Good luck

Jump to this post

TY

REPLY
lskoehl62 | @lskoehl62 | Jun 12, 2022

I’m coming off Linezz it’s not working for me. I asked the gastroenterologist to send me my records and the results of the biopsy’s. I’m going back drinking 4 8oz of Miralax a day and taking 2 stool softeners a day. I’ll take my 2 laxatives on Tuesday and make Wednesday my poo day. I just afraid 20 years down the road I’m going to need emergency surgery

REPLY
sickofbeinsick1. AKA Tina | @sickofbeinsick1 | Jun 12, 2022
In reply to @sallyw133 "I started the 20 mg of Celexa because that was the only new thing I came..." + (show)
@sallyw133

I started the 20 mg of Celexa because that was the only new thing I came away from the new gi with. Took in am because it can cause insomnia and I already have trouble sleeping. Ironically, made me really tired and nauseous. Not few hours of sleep. Next day, diarrhea started so that night cut normal meds in half. Next day, could not leave br for hours. Well, I am no longer constipated! Unfortunately, we are leaving for a 10 drive to the beach in 3 days. This is not a good thing. Plus, I feel awful. So, next day I cut in half. Little better. But now, two days later, I’m in motel, half way to beach, second day, no BM. Couldn’t take much because likely we will be stuck in traffic. I have been looking forward to this vacation with my son and daughter and 5 grandsons for 3 years, and I’m probably going to feel like crap the whole time. I am so sick of this whole thing.

Jump to this post

The best advice I have is small portions, skip a day (no solid food) but plenty fluids, meal replacement drinks, eggs, potatoes, just about any fruit, try smoothies or shakes (as a treat). Soup! as long as it doesn’t have big chunks of meat. Water, water! It’s not fun, but it’s better than pain & suffering. I’ve been working this out for 4 yrs…I NEVER thought I’d skip a day of food in my life….but there it is…you work up to it gradually. It’s helped me. I could not go on with the pain any longer. So I took matters into my own hands. Unfortunately, everybody is different…have all the V8 or prune juice you want (or can handle)…a little vodka in V8 can’t hurt either…(just for a cocktail on vacay) lemon in tea.
Good luck

REPLY
1 reply
dbush73 | @dbush73 | Jun 12, 2022
In reply to @jcarndt "How do you use the epsom salts ?" + (show)
@jcarndt

How do you use the epsom salts ?

Jump to this post

Directions on the bag or the Box

REPLY
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