Anyone else have a Redundant / Tortuous Colon?

Hello all .... I just joined Mayo Clinic Connect. It is my latest grasp at getting information and help with my tortuous colon condition, which has plagued me for 40 of my 54 years. I was diagnosed with tortuous colon in 2012, and had a bunch of tests performed on me which ruled out celiac, Crohn's, gluten allergy, and other stuff. I have some food sensitivities, but essentially all my GI problems are due to my tortuous colon. Basically I am constipated 24/7/365 because my colon is a long and winding road from which nothing emerges at the end without some sort of intervention. In the very best of scenarios, usually with the help of coffee after strenuous exercise, I go once a week, two at most. I start out each day feeling OK, but as the day goes on and as I ingest food, I feel worse and worse with the bloating, gas, and general feeling that I am carrying around a cantaloupe in my abdomen. I am a relatively small person, but my stomach area feels disproportionately big because of my tortuous colon and the stuff in it that I carry around from not being able to ditch it like a normal person. My gut feels best when I don't eat (except for that hunger thing). I relate to @sher71 and probably a lot of others in this. I drink lots of water, exercise every day, and eat as much fiber as I can. So my condition would be even worse if I didn't do these things.

From reading the many posts in this thread, I see that a tortuous colon is not as rare as I thought it is. I feel better at the thought of being able to talk to people about this, people who know what it is like to have to live with this. People who have been told (e.g. @scottisfull), as I have been told, that a tortuous colon is not a big deal and can be totally managed by more fiber, water and exercise. People who know this is not true.

In the last couple of days of reading this thread, I have gotten some ideas that I will try, and just for that I am already very happy and grateful. I learned that there are many like me who have to take 3 or 4 doses of Miralax per day in order for it to do anything. Or, take other stuff, natural and otherwise, to coax the colon to wake up and do something. I relate to those like @lasirvent and @dianecostella who have one thing (or nothing) that works for them.

I started thinking the only solution for me is to take out the extra loops and twists and lengths of my colon in order to get better. Looks like some folks like @thellman and @emma83916 are also thinking about this, and some, like @ellemorgan and @kathyoung, have had it done. I would love to discuss further.

Happy New Year to everyone and I wish all a 2022 with a better stomach.

Hello I've had a tortuous intestine, and dealt with it's consequences, for all my 70 years here on this earth. I'm surprised that the Dr. didn't inform you of diet! But I'm also not surprised. And, I believe, it's different for all of us. It's a continual learning experience. For me, there has not been a "cut and dry" formula. Unfortunately, because it would have been ALOT easier! Originally, I was told, lots of water (min. of 6-12 oz. glasses) per day, lots of fiber, Miralax (which didn't work for me), stool softener, magnesium citrate, etc. I use Metamucil crackers occasionally when I'm needing the extra. I use psyllium (8 mg) sprinkled on oatmeal and cereal) daily. But currently, I found Prunelax to work very well, most of the time, depending on other factors, such as diet, sleep, etc. I am taking the mini tabs, (3 to 4) nightly. I have found that I need to use Bisacodyl once a week or every other week. I also plan on trying the extra strength Prunlax when I finish my supply of mini tabs. Prunelax has worked so much better for me than Miralax. I have been on this site for a year and what I see is different things work for different people. Doctors seem to have forgotten that, at least in my area. You, as an individual, have to keep trying different dosages, brands, etc. to find what works best for your body. Remember, with a tortuous intestine, we have a much slower transit time than "regular" folks and things can get backed up and much more difficult to pass. So exercise, water, trying different aids, such as Prunlax, not eating too much cheese, or certain types of food,..............all help in you finding what works best for you. It's a process and a frustrating one sometimes. Sometimes we don't feel good at all until we change what we're doing and try something else. It's been a journey. But thank God above, I'm still here and still learning. I wish the same for you. Jacque

Just diagnosed with tortuous colon, and not clear on what diet to follow. FODMAP? High fiber? Would appreciate any suggestions.

Could you shared what kind of diet helped you with your tortuous colon symthoms?

I talked with my doctor about it during the follow-up visits within a few months after the surgery, and everything was typical and on schedule for healing at that time. I have not had any interactions since then, but have just been trying to address the situation via diet and nutrition to restore my microbiome that was completely destroyed by the intense laxatives and antibiotics necessary for the surgical procedure. It has just been a struggle since the foods that are most problematic still are also the foods that are most nutritious. I don't like taking supplements, preferring to get everything from nutrient-dense foods.

Hi @chenry44 and welcome to Mayo Clinic Connect. Sounds like you are having a difficult time after your colon removal. You will see that I moved your post to a discussion that talks about the struggles and symptoms you are having. I did this so that you can connect with other members like @seasalted, @brendaharvey, and @euqcaj

Have you had a chance to talk with your medical team about the possibility of introducing new foods and what is normal?

I had about a foot of my colon removed close to two years ago. The mass was not malignant so chemo/radiation were not required. I expected to have digestion issues for a while but am still having excessive, sometimes painful, gas (and sometimes diarrhea and very occasionally constipation) after eating many healthy foods, particularly fruits, vegetables, seeds (pumpkin, sunflower, sesame), legumes (beans, hummus, peanut butter), cheese, eggs, and spicy foods of all kinds. This eliminates the majority of what I have always eaten and prefer to eat. I've tried moving more toward cooked fruits and vegetables rather than raw which seems to help a bit, depending on which fruits or vegetables. I've experimented with probiotic supplements which made things worse. I've tried adding small amounts of probiotic foods such as kefir, kombucha, or probiotic sauerkraut daily while following an ayurvedic diet. The kefir seems to do fine, but the sauerkraut and kombucha sometimes irritate. The problem is especially uncomfortable at night when I am lying down (this is also after my main meal of the day usually). The only foods that seem to be consistently benign are oats, rice, salmon, roasted chicken, potatoes, cooked carrots, blueberries, mango, and homemade granola (made with oats, ground nuts, coconut oil, and a small amount of maple syrup). I'd like to know what other foods would be particularly easy to digest and how/when to reintroduce my favorite foods (fruits/vegetables of all varieties, nuts/seeds, possibly beans...) Thank you!

You described this (our) condition VERY well! And yes, I have suffered with this all my 70 years of living. Then I came down with C-diff from an antibiotic, Clyndamycin, prescribed by my dentist for an oral infection. I almost died, my husband tells me. I felt like I was going to. That will be one year ago this coming February. In the course of recovery from that AND dealing with my tortuous intestine, someone recommended Prunelax to me on this site. It took some adjustment time but it is working well, or a heck of a lot better, than anything else I've tried! i'm very sensitive to routine and times like the holidays, running around, different schedule than normal, can throw me back into the constipation and misery of it all. That just happened. So I had to take some Bisacodyl to clean out the system and start over again. If this regimen continues to work for me, which I pray it will, I can live with that and would prefer that over surgery. I hope that you can find a regimen also and use surgery as a very last resort. But I do know people that have had portions of their colon removed and they are just fine. So I hope you find what works best for you. Happy New Year! Jacque

I’ve had chronic constipation most my life but then add in a rare vascular compression that also affects my digestive system. It’s been a constant battle. I haven’t helped my tortuous colon by having to strain when going. I finally found something that works. It’s called Lactulose. It’s a prescription syrup and it hasn’t failed me yet. I have tried everything else but so far this hasn’t failed even after using it for 8 months. I only take it if I don’t go for 2 days. I have found that if I keep a handle on it and not let it go for more than three days it works better. I had a G.I. doctor tell me what you have a tortuous colon, you’ll never not have chronic constipation. I’ll show her!!