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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I have the same condition....they get half way then the hospital has to finish up what could not be reached. I am getting my last one next week and because I am 80....no more!!!
I do have a tortuous intestine. I think my condition is different than yours but i wanted to share with you. Religiously I have followed the schedule for colonoscopies. This last time was my last. I understand it's important but I also think if there are concerns, there are other ways to do this procedure. Because of the "tortuous" intestine, (and I do have more intestine than I need for a person my size), I always run the risk of the colon being punctured or torn. This last procedure set me back and caused more harm than good. I told my gastro it was my last and she mentioned there are other methods available to "look inside". I'm 70 years old now and I hope I don't have to face another reason for a colonoscopy. I know the doctors want a repeat if you've had polyps, etc. The polyps they removed from me were benign and it put me in a lot of discomfort and resulting constipation issues (which I've had all my life, but this made it worse). Then I contracted C-diff after taking Clyndamycin and was very very ill. I'm still recovering 8 months later but doing much better. It has been a long recovery but it's also taught me some things. I have had more help on this site versus my own primary doctor and gastro. The support is wonderful and for me, some very helpful advice. I hope that by your persistant communication with people on here, you also find some answers. And I agree that it would be prudent to ask your doctor direct questions and as many as you can. We need to be our own advocate. I have found there are too many "pat answers" that are past out without looking at the individual. "Just follow this",............I trusted and ended up with more problems because I didn't question enough. We all need to think things through as best we can and do our own research. Especially now. I wish you all the best and keep reaching out on this site. Jacque
I suffer from the same. What I don't understand is surgeons will cut out 20 inches of colon at the drop of a hat for someone with diverticulitis, put tell us there is nothing they can do. I'm going to a new GI doctor next week, I want to get a new set of eyes on my condition and maybe he has a surgeon on some different therapeutics.
@wmn1 I'm so sorry for all that you've been through. Have you asked just how the doctor is going to manipulate your colon? And what does it mean when doc says your colon "isn't being held in place anymore because the sheath is stretched out of shape?" I'm glad you're asking here. I hope you ask the same questions to your doc. Please let us know. I wish you the best. And please write again. suz
I have had 3 incomplete Colonoscopies since 2003 because of a "Very redundant colon". After the last attempt the doctor ordered a "virtual colonoscopy" in which air was pumped into me and images were taken (quite uncomfortable!) The test results were not very conclusive so I really don't know what's going on in the last 1/3 or so of my colon.
I have discomfort almost daily in my upper rib cage area front and upper back.
My BMs are very irregular -in timing and amount, width (narrow)but I am not constipated. (I had been many years ago due to painkillers post surgery)
My new Gastro. Doc. thinks he can successfully give me a COMPLETE standard colonoscopy by sedating me more and manipulating my colon more ...somehow. He also said that a very redundant colon does NOT mean I have EXTRA colon, only that it is not being held in place anymore because the sheath (or whatever) is stretched out of shape (or something like that) due to childbirth, prior hysterectomy, age, and obesity. Does this make sense? I just don't know what I should do.
I've got Tortuous colon, Diverticulosis (just off a bout of diverticulitis) & currently have tissue samples are in biopsy to rule out Microscopic Colitis. From what I can tell, these are all conditions usually caused by long term constipation... but I have spent my whole life with Chronic Diarrhea! I've only been constipated a couple of times after taking either pain killers or anti-diarrhea meds (a single pill will stop me up for a week.)
I wouldn't try to advise. I can only share what I've learned and experienced. I'm sure you wouldn't make any changes without consulting your doc. So, that said, For me, and for people with SIBO, fiber is bacteria's fuel and can exacerbate constipation. I was so at a loss because that's what I always heard, more fiber. FODMAP addresses the fiber issue by listing foods that don't have a lot of fiber. I have a FODMAP cookbook and a rice cooker and follow the diet and it helps.
You are facing a lot of challenges and I wish you well. Talk to your doctor about the FODMAP diet and your fears about going into surgery. Have you seen a nutritionist? I've never had a blockage other than severe constipation. It's a difficult problem that so many of us suffer with. It affects your mood, energy, sleep, back . . . I'm not completely average, but I'm better. Please follow up on the link I sent you and talk with your doctor. Feel free to write back. Support is what Connect is about. Take care.
I have tortuous colon and will have total hip replacement on 11/8 and the gastro doc said I couldn't have surgery as it is so bad. I am concerned about post Op constipation. My doc said try oxyclense from Amazon. I just ordered it and will see how it works. I am on high fiber diet.
Any advice would be appreciated as it very much concerns me.
Thank. You.
@bgiddio Hi. Yes the FODMAP diet is for SIBO. https://www.hopkinsmedicine.org/health/wellness-and-prevention/fodmap-diet-what-you-need-to-know That's the link to the John Hopkins webpage that tells about it. As I understand it, low FODMAP foods are low in the sugars that the bacteria thrive on. Once you get into it, it doesn't feel restricting at all. It may mean you need to forgo your favorite foods for a while, as your body adjusts. Then, once you've gotten used to it and things feel a bit more manageable, you can do a little cheat here and there. But it's been really helpful for me. I also have problems with swallowing, so I do the small 5 meals a day. That's kind of a drag, because I'm really not comfortable eating out, due to my swallowing problem. Oh well. I've pretty much adjusted to that too. Also gave up caffeine. God, I sound like a born-again twenty-first-century ascetic. Hope this helps. Let me know how you do. 🙂
@suzbyyrneHi. Is the FODMAP diet you are on for the SIBO, and do you also have the tortuous bowel?
My Dr. was great at diagnosing but not on helping me with diet. Considering FODMAP, know its strict, but
if it helps with the constipation I would try it. Did go on the Specific Carbohydrate Diet a few years ago, similar to FODMAP but not as strict, and it didn't help.
Any help out there is appreciated. Thanks!