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.

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?

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

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.

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

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.

I’ve never taken Creon!
I was prescribed Zenpep to take six times a day.
Fortunately we found that dose was way too much for me.
I only take one Zenpep a day and it totally works for me.
No side effects whatsoever.
I do have a very regimented diet and track everything I eat on my Fitbit app to ensure that I am eating enough.
I have gained my muscles back and up to 106!!!
I have totally eliminated sucrose from my diet and have no issues with eating protein, complex carbs and fats. I can eat all the fruit I want and am content with avoiding desserts unless I personally make them myself using stevia.
For instance I made homemade ice cream with stevia and fresh peaches and whipping cream and had no problem with digesting all that yumminess.
My gastro dr told me that my adherence to the diet is what has made the difference in the minimum dosage of Zenpep. After 30+ years of misdiagnosis I am more than happy to finally have a solution.
No more embarrassing accidents, no more agonizing cramping, no more dashing out of rooms in a panicked race to find a bathroom.
Any further questions, just ask💪🏽

I too received a recent diagnosis of EPI. Prescribed Creon. The side effects were intolerable. Terrible nightmares and excruciating back pain. Does the Zenpep cause side effects for you? I am glad you have a happy ending! Thank you for posting. I had just got off the phone with the pharmacist to ask about alternatives to Creon.

My colonoscopy doctor said I have a tortuous colon. I eat lots of whole grains, beans, fruit and vegetables and no meat. I'm usually out of the bathroom in 3 minutes. I feel blessed.

So you mentioned pancreatic insufficiency…
Do you take the prescription enzymes? ie, zenpep or creon?
I was misdiagnosed for 30 years with IBS-D and it was a constant struggle because nothing really helped.
My condition ruled my life 😵‍💫.
Finally the 3rd gastro practice said I had a tortuous colon, diverticulitis, chronic gastritis, hiatal hernia, stomach ulcers, cachexia and IBS-D. ALL caused by exocrine pancreatic insufficiency. I now take Zenpep when I eat and it has truly changed my life for the better. My weight is now a healthy 106, (I’m only 5ft 2inches) and very fit age 67.
The ONLY foods I avoid is sucrose. That requires another prescription enzyme and I prefer to just avoid any added sugars. I consume all the fruit I desire with no issues whatsoever. If I want desserts, I just use Stevia to bake with and have no issues. I hope others that suffer from these digestive intestinal issues get tested for EPI. It’s estimated that there are MANY people misdiagnosed. It’s a genetic condition that was fairly unknown until around the year 2000.
There is HOPE! Never ever give up advocating for yourself.