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Anyone else have a Redundant / Tortuous Colon?
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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Sounds like you are a whole lot worse off than me. I've been dealing with this for four years. Just had another colonoscopy on Monday and had one back in January. I used to be able to go about 8-9 months without constipation aftetwards. In January it lasted 2 weeks. The one on Monday lasted a day. I've tried linzess, amitiza, and trulance, but they stop working after a week. The only thing that works is massive amounts of Miralax. Then I get dehydrated from the water loss and it affects my kidney function. It's a never ending cycle. Looking for a surgeon to cut out the link. I've been to two and they said I wasn't bad enough. Very frustrating.
Thanks, four years and counting!
I have chronic constipation and have tried everything. I finally found a syrup called Lactulose that makes me “not chronically constipated”. It’s been a life saver. Your physician has to prescribe it.
And, like you, I have tried eliminating gluten...not necessarily FODMAP bc that fructoogliosaccharide is a no-no on the FODMAP diet but it still works okayish for me and is one of the only things that does.
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1 ReactionThank you @amandaburnett for connecting us. @thellman I am in your exact same boat and I don't know personally anyone else who has this issue.
I've had chronic constipation for decades, but 2020 and 2021 have been absolutely stunningly worse than before. In my earlier years it was written off as IBS-C. Then when I had my first (aborted) colonoscopy, the GI told me I had a "very redundant" colon. The next two GIs echoed his sentiments, and now the 4th GI is all jaded and says it's only "moderately" tortuous and that the one little blip on the screen during my anorectal manometry (after which I immediately relaxed my muscles) shows that pelvic dyssynergia is the cause of my constipation. (I view this as medical misogyny. I even paid $1500 for three PT sessions to train my anal sphincter and got an A+ but still I'm 10+ days between BMs, and even then only with stimulant lax, often coupled with a glycerin suppository or enema).
i had a colonoscopy a week and a half ago and drank the entire 4 liters of goLYTEly plus four ducolax with no bowel movements at all until the 11th hour and they almost made me reschedule (and drink two 4-gallon jugs, which I told them I would never in a million years do). This has never happened to me on colon prep. NEVER. And I don't regularly use stimulant lax, so it's not like I'm dependent.
I haven't asked for surgery, but I have asked for better imaging b/c my low back hurts and my particular type of breast cancer (for which I was treated with double mastectomy and never touched the lymph nodes, so no radiation, no chemo) loves to metastasize to the gut, so I'm more of a mind that we MUST find out if there's something binding to the colon. I do take an aromatase inhibitor that lowers my estrogen to zilch, so perhaps my muscles have atrophied.
Additionally, I have a history of pernicious anemia and high parietal cell antibodies indicative of autoimmune gastritis. Because my atrophy healed and my chronic gastritis isn't active anymore, my GI says I don't have "classic" autoimmune gastritis. Because it's a slow chronic process, and I've been treating with weekly B12 injections for 2 years.
That's way more than you wanted to know about me, but tell me more about you. How long has this been going on, and how old are you?
I've taken all the drugs except maybe amitiza. Some worked initially and then stopped. here are some things I've used that did work initially and then stopped:
fructoogliosaccharides (gas inducing but that dies down)
xyloogiosaccharides (same as above)
magnesium (tons of it, which isn't nice to kidneys, so I try not to)
an abundance of prunes and fruit juice
Bellway psyllium fiber with more water than any human cares to drink
Senna herbal tea (which I try not to use b/c it can be habit forming but we get desperate). it colored the insides of my colon (nice).
People in my autoimmune gastritis group swear by betaine Hcl under the reasoning that reduced stomach acid causes them to not digest thoroughly and the betaine Hcl helps with that and results in less constipation. I have yet to be brave enough to take more than the 2 capsules listed on the container, so I don't know if it works for me. Those who use it successfully take 3-4 with each meal.
Hi @thellman and welcome to Mayo Clinic Connect. So glad you found the group. This will allow you to connect with members like @judy75, @ashweb901, @lasirvent, @s35flyer, and @dablues who also have tortuous colon.
"For the select small number of constipated patients who cannot be managed medically, surgical options should be considered." - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780139/
I would suggest getting another opinion about surgery if you have been through everything else without relief. Don't give up on yourself. You know your body better than anyone else.
How long have you been suffering with this?
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2 ReactionsI just had my 2nd colonoscopy in a month after a trip to the ER Bc I got extremely sick. Of course the didn’t find anything and blamed it on my meds. But I was the one realized I was constipated for over 2 weeks. Which I have had a problem with for years. But I got an appointment with GI dr. and also was diagnosed with a tortuous colon. Everything I eat goes right through me . I feel like I missing out on so much , Bc i can’t be away from the bathroom. Is there a diet that will help? My dr. Put me on Linzess and miralax.
But this is a nightmare ! Any suggestions . Thanks
Tina
Has anyne had surgery for a tortuous colon? I have been suffering from chronic constipation, gas, bloating, H Pylori, and my general doctor has been monitoring my kidney functions due to the diarhea induced from miralax and drugs that causes dehydraton, which is not good. I have tried Linzess, Amitiza, and Trulance in combination with Miralax. I have have numerous colonoscopies, sitz marker tests and visits to two surgeons who say I am not a candidate for surgery because it is not bad enough. I've had several trips to the ER do to chest pain not knowing if I'm having a heart attack or I'm just backed up. tried all kinds of diets but nothing seems to work and I drink water like a fish! HELP!!!!!!!!!
Hi Amanda, Thank you for connecting. I’m happy to try and offer helpful solutions & advice to others. You just never know what’s going to be good for another person, and what they’ve heard or not before. I’ve been through a lot of different medical things in my life and feel like I’ve gained quite a bit of knowledge, I try to educate myself regularly and use common sense too. I was first diagnosed with the Tortuous Colon approximately 15 years ago. Then after 5 years told by another GI doctor I didn’t have it. I was re- diagnosed 2 years ago. Besides dietary changes really being a big help, I also do some gentle massage on my intestinal tract from time to time. Castor oil packs feel good at bedtime and are supposed that be helpful in moving stool. Not totally sure if it’s worked for me, but it’s very soothing anyway!
I eat about 4 prunes a day. I don't always eat chia seeds or flax seeds every day. When I do eat them, I grind mine in a powder and will sprinkle either or onto my Greek Yogurt for breakfast.
I've also made Chia Seed/Flax Seed Bread using the whole seeds only once though. As for the times I eat prunes it is a couple times a day OR I might eat 4 at once, but that is unusual and since my colonoscopy I still am not normal! I drink all the liquid I'm supposed to AND, I am finally learning how to eat properly. I was always a fast eater and not chewing my food properly due to when working I only had a 1/2 hr. lunch so ate food fast. Don't know if this will help or not.
Back to eating tossed salad again. Been off of it for a couple of weeks. I'm Italian or I should say half Italian, eating a toss salad every day is the way I was brought up so that a lot of raw vegies in it. When having allergy/food testing a few years back I was told I didn't have any food allergies and I'm in Georgia, BUT in NYS being tested years back they said I was allergic to so much it was ridiculous.
So I don't know what to believe as to allergy in foods or even in environments. Environments, allergies are different I know that but why living in one State you are told you have numerous food allergies but then living in another State you are told you have NONE. That doesn't make sense to me, but I'm not a doctor. I take Lactaid for dairy since it doesn't spoil as fast as regular milk. Don't know why but that's why I take take that. I only use 2% Lactaid in my coffee. I only drink 2 cups or sometimes 3 cups of coffee a day, whereas when working I drank pot after pot.
I weigh my food, and don't eat big portions. I eat off a small plate. I never was a big eater and I don't starve myself. I eat what I like even if I'm not supposed to, which I know it's bad, but not giving up having a hamburger, steak, or a hot dog or sausage once in a while. I know, that's bad but that's me. So I don't know if I'm doing things properly or not but I just can't eat veggies and no meat. I eat more chicken than anything else, and I eat certain fish. I'm more of a seafood person but hardly ever eat seafood, like Shrimp, Lobster, etc.
Bread! I make ALL my own bread since I grew up when bread was more like bread and not all air filled with tons of chemicals, so been doing that. I don't eat a lot of bread but I do it it. I do not make Gluten Free Bread though. So that's about how I am with my body and it doesn't appear to be working that great.