Anyone else have a Redundant / Tortuous Colon?

I am totally not discouraging you from trying the low FODMAP diet, only sharing MY experience with it. I was so sick and in so much pain last summer that I tried it as a last resort. I did it under the guidance of a trained dietitian. I was already severely underweight and continued to lose more weight because the diet is so limiting. I felt so sick and the foods I was allowed to eat, I did not want to eat, so I just barely ate. My gi
finely made me stop it.
I recently met with a new dietician after finding out the tortuous colon is the root cause of my constipation. She said the FODMAP works for food sensitivities which is generally not the case with tortuous colon. It is an actual functional issue. It’s more the composition of food that affects our digestion, unless you have an actual intolerance like wheat or lactose. I’ve been following her diet for a week and have noticed a huge improvement after years of every medication available.

would like to hear how others are managing ? I'm doing fair-keep fluids up -high fiber-25-30 grams daily...psylium in am along with bentyl for spasms and peppermint oil capsule..drink a lot of fluid, small amt of 1/2 strength coffee 🙁 herbal ice teas, red meat 1-2 times month, Large serving of oatmeal and fruit in am-decreased fats- when I have a bowel movement-the spasms build up until I either pass gas or move a stool. My focus is to keep "everything flowing"-several times I went off regimen-got constipated with increased spasms-taught me a GOOD LESSON AND I REALIZE THAT BEHAVIOR IS WHAT WILL SEND ME INTO COMPLICATIONS. Need to be dilegent-if I miss my psyllium fiber and oatmeal in am (go out with friends)...I come back home, tank up on fluids, my psyllium and then have the oatmeal for lunch or dinner. I eat fruit 3 x day -with meals or snacks -dessert and I am tolerating 2 walnuts with my oatmeal . Really making an effort to chew well and slow down...
Anyone have more advice? I'm not getting much help from my GI doctor or staff-no teaching given...(got everything off the internet (which isn't always accurate .)
Would like to know-
Is this a lifelong condition?
Would surgical removal of elongated portion return me to my
prior status?
My last colonoscopy was extremely painful...no cancer they say,
no polyps, but if they werent able to "get through", how do they
know that?
Would like to know your experience with management...I feel
obsessed with my bowels-living on the toilet.

To Sallyw133 - My thinking is a little confused since I reactivated an old back injury that according to my internist added to my chronic obstipation. I'm in pain barely controlled by acetaminophen and using a lot of otc senna products and stool softeners to keep my bms going which also reduces my back pain and spasms. So my apologies if my questions are basic.
Are you saying that if a tortuous colon is the main cause of constipation, but there are no food allergies or sensitivities, a low fodmop diet is inappropriate? And if so, that a low fiber diet reduces constipation more than high fiber?
I've been told I have a very floppy colon and I believe there is a lot of scar tissue causing adhesions in my gut. Maybe I'm making my problems worse with my high fiber food choices that would explain the sharp, but mostly brief, pains I get as the fiber struggles to make it through all those tight places.
Your thoughts?

That is what the dietitian told me. There are two types of constipation. One from poor eating habits, food sensitivities, sedentary habits, etc. The other, functional. Slow motility, tortuous colon, etc. Too much fiber, especially insoluble, will make the second type worse. It’s hard to digest and basically tends to move slowly and is more likely to “get stuck” in all those loops and twists. All I know is that I am on day 10 and am pretty much taking almost nothing and going every day. It is difficult. I really miss fruit. But she did say after two weeks, I could try small amounts here and there. I am not a dr so please realize that this has been what is working for ME.

Thank you. It is great to hear you're having a daily bm and are more comfortable. I hope you post your progress.

I have emailed my Kaiser internist about this as so much on the web recommends a high fiber diet that "pushes" through the tortuous loops rather than struggles to negotiate the turns and twists. I have a kitchen full of high fiber produce & legumes, but they might be peeled, blended or cooked to reduce the fiber content.

Kaiser wrote: "But a low-fiber diet is often needed after bowel surgery or when you have a flare-up of a bowel problem. You might be asked to follow this diet if you have Crohn's disease, ulcerative colitis, diverticulitis, or another condition that can cause swelling, pain, or NARROWING OF YOUR BOWELS." https://healthy.kaiserpermanente.org/health-wellness/health-encyclopedia/he.following-a-low-fiber-diet.abo1009

That is what the dietitian told me. There are two types of constipation. One from poor eating habits, food sensitivities, sedentary habits, etc. The other, functional. Slow motility, tortuous colon, etc. Too much fiber, especially insoluble, will make the second type worse. It’s hard to digest and basically tends to move slowly and is more likely to “get stuck” in all those loops and twists. All I know is that I am on day 10 and am pretty much taking almost nothing and going every day. It is difficult. I really miss fruit. But she did say after two weeks, I could try small amounts here and there. I am not a dr so please realize that this has been what is working for ME.

Interesting. My diet isn’t exactly the same and one big difference is the fact that I have a LOT of stool. So much, in fact, that I’ve stopped all meds, prescriptions and over-the-counter.

Hi Sally, I know this is alot to ask, but would you mind sharing with me what you typically eat in a day now on the low fiber. I feel like your story sounds just like mine. The doctor told me to follow a very high fiber diet for my tortuous colon along with magnesium, miralax and motegrity and I still couldn't go to the bathroom. It wasn't until I saw your post that everything clicked. Thank you for sharing, you are helping so many people 🙏

Sure. For breakfast, I usually have a small bowl of
Cracklin’ Bran cereal (my current fav! Ok as it’s oat bran), cup of coffee and white grape juice. Lunch smoothie with fruit, milk, yogurt, protein powder. Crackers and cream cheese dip. Dinner usually chicken or seafood grilled. Potatoes. Grilled veggies. Or pasta with grilled veggies or marinara sauce. Pizza with cheese. Snacks ok but no popcorn. Ground chicken or turkey ok. Having nachos tonight. Just no tomato or lettuce. I know it sounds restrictive but not near as bad as FODMAP. And she did say after a few weeks I could start adding in a few of something here and there. Wouldn’t destroy me for days. But please remember, this is working for ME. I don’t want anyone to get messed up because of it. I was desperate and willing to try anything. I also had awful diarrhea initially because I was doing it with the meds. It takes some experimenting. Feel free to send me messages with any questions. Hope it helps anyone!

@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!