Anyone else have a Redundant / Tortuous Colon?

Thank you for sharing. I was diagnosed two weeks ago with tortuous colon. I just started a low FODMAP diet and hoping to find out what foods cause be the most issues.

Where do I find the group on this subject?
No group in drop list applies!

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.

You may want to look at my previous post about the recommendations from dietitian. Has made a huge impact in one week.

Hi @watenpws and welcome to Mayo Clinic Connect. I moved your posts to this discussion here: https://connect.mayoclinic.org/discussion/redundant-tortured-colon so that you can connect with other members on this subject like @sallyw133 and @joannedvr

When it builds up does it cause a lot of pain? How are you managing that?

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.

@sallyw133 I’m looking for a post you referred to about diet for these gut issues.

I just returned early from a European vacation due to ongoing diarrhea and gut pain. I couldn’t plan early outings and some days could barely eat a thing. If I did eat something not in my small, bland set of easy to digest things, I paid for it with pain & diarrhea. To get home on a long flight and 2 days of traveling, I took Imodium and now haven’t had any output in 3 days. I actually feel more normal than I have but am worried about not eliminating the waste.

No raw fruits and veggies. Ok cooked or blended in smoothies. No red meat. Chicken and seafood ok. Nothing with more than 2 grams of fiber. No seeds or nuts or corn of any kind. If I need a little boost to go, mag oxide.

I have redundant colon and keep ending up in hospital with nausea, vomiting, cramps etc. caused by constipation. My weight fluctuates wildly, I am sick all the time, it causes pressure on my bladder, and I am tired of being told it's my diet. I eat a very clean, healthy, fibre filled diet, do not smoke or drink alcohol, avoid processed foods, added sugar, corn, processes soy, and red meat. I exercise 5 to 7 days per week and drink a minimum 2.5 litres of water per day. Unlike you I find eliminating coffee disrupts my motility further. Regardless, I am pretty sure I never completely empty and that's why I block up. When I eliminated corn from my diet and had a bout in hospital, the resulting "corn motility test" was 21 days ... I need help and no doctor seems to care. I have a BMI of 32 when I am in a full blown episode and doctors seem to equate my supposed obesity with my problem, not ever bothering to believe my drastic weight increases accompany my blockage episodes. My last one I documented a 40 pound increase in 10 days and a drop back down by 30 pounds in 2 weeks post episode. Still, no one listens. I am exhausted mentally and physically. I'd be much happier not eating at all.

@watenpws, you will find members talking about redundant or tortuous colon in the Digestive Health group here: https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/