1. < Digestive Health
Profile picture for onaquest

Anyone else have a Redundant/Tortuous Colon?

Posted by onaquest @onaquest, Nov 7, 2018

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

Interested in more discussions like this? Go to the Digestive Health Support Group.

Profile picture for denisep
denisep | @denisep | Jun 27, 2019

Hello. I also have a redundant colon. I am 51 yrs and have been constipated all my life. Thought it was normal to have a bm every week-10days. as I became an adult I started experiencing excruciating pain in the abdomen. Noticed it alway happened after eating certain foods like pasta, pizza, etc. I would just suck it up and deal with the pain. I started seeing my doctor about the chronic constipation and pain. He had me try several different meds and combinations of meds. After learning that my Grandmother who died of colon cancer at age 42 (before I was born) I went in for a colonoscopy. Thats when I was told I have a redundant colon and I was probably born with it. I have been seeing a couple different specialists at Stanford GI. Had a second colonoscopy and many embarrassing tests. I just started taking Trulance and I don't think it is doing anything for me. I now have been referred to a Motility specialist and awaiting the appointment. I will also be starting my 3 round of Physical Therapy to try to strengthen my pelvic floor muscles.

I wish I had some advise for everyone on this forum because it is a truly tortuous condition to have. I can say that if you cannot find a treatment that helps, don't give up! Make a list of all your symptoms and ask your doctor. Keep the pressure on him. If he doesn't know how to treat it, ask for a referral to a specialist like a motility specialist. Please keep posting to this site so we can learn from each others experiences.

REPLY
2 replies
Profile picture for les2436
les2436 | @les2436 | Jun 27, 2019
In reply to @kanaazpereira "Hi @lotsofpain, You may notice that I moved your message to this "Redundant / Tortuous Colon”..." + (show)
Profile picture for Kanaaz Pereira, Connect Moderator @kanaazpereira

Hi @lotsofpain,

You may notice that I moved your message to this "Redundant / Tortuous Colon” discussion as many of the members have posted about pain in the colon;
I thought it would be beneficial for you to connect with them and read about their experiences.
Could you share more details? Have you been diagnosed with any digestive conditions?

Jump to this post

Thanks, is surgery an option? Any help would be more than appreciated, I also have several health problems including Heart Failure, Diabetes, copd on and on . Totally helpless. Thank God for God and Family.

REPLY
Profile picture for les2436
les2436 | @les2436 | Jun 27, 2019
In reply to @karena65 "I had a colonoscopy today. I read the report and one finding was a redundant colon,..." + (show)
Profile picture for karena65 @karena65

I had a colonoscopy today. I read the report and one finding was a redundant colon, but no polyps or twisting this time. I looked it up and found redundant meant a colon that was longer than normal for the body, so it takes more time to do the colonoscopy. Further research lead to the importance of self care to prevent impaction and twisting. Next, I read your great posted question. It made me wonder why the I had no poly this time. But I still have bouts of intense pain, and the other symptoms you mentioned. Mine csn over something as simple as a 3 hour car trip and eating in a resteraunt.
My history includes emergency room visits with the symptoms you described. My story includes concurrent Afib incident.
Through my gassy, boated, and sometimes severe pained adulthood, here is some of the advice I have received: My GP said take fiber. Eat whole grains. However I was alergic to over the counter fiber stuff, and grain sensitive. Ground flaxseed helps. My gyneccologist (of all people) prescribed a good multi probiotic. This practically solved the problem for a few years, most of the time. (Must take pill every time I ate.) My health coach sold me a natural ground walnut, barley greens fiber product that was helpful, but I became allergic to it and it caused sinus problems. The mistake I made was to smell it. My Naturopath sold me on digestive enzymes a year ago, that helped. And they are quite expensive. Then, last fall my medical doctor who is trained in Mexico City and is an Internist advised that I go to nutrition meetings his asistant leads for free. It turned out to be a Whole plant diet. This means plant food only. No meat, milk, no animal product of any kind, no eggs, processed oil, not even olive oil, no processed sugar or fake sugar. No fake vegetarian food laden with salt. 6 to 8 glasses of water a day. No other drinks, unless soaking my own seeds. Manufactured almond milk has salt. There has been testimonies of colons healed that once were polyp prone and now are polyp free. Hmmm, I did not have a single polyp this time. Raw nuts and seeds are ok! I do not think whole seeds are good for polyps though. Following that diet has helped the inflammatory other problems I have too. In a pinch I have used simethacone. Probably not good in the long run. As I age, (with only one kidney doing the job of two) I have reduced ability to process excess fluids. Chewing my food very well and not overeating, moving during the day helps, too.
My thoughts are for you to be healed and that you find relief. I thank you for the details you shared. Key words for me is faith and self-discipline to follow the diet consistently. I just retired from teaching special education. So I am hopeful the less stress, and extra time will help me be closer to using my food as the main medicine/ fuel. Being out of pain and free from the gas and bloating is motivating. Sorry this is so long, I hope my journey gives hope and encouragement to fellow people with redundant colons. May they even untwist and depolyp (THANK YOU SURGEONS) And May we all listen and follow our Great Physician.

Jump to this post

Hi which probiotic did you use? Have you heard of Peptiva? Thanks Lesley

REPLY
Profile picture for les2436
les2436 | @les2436 | Jun 27, 2019

Hi Just finally got colonoscopy have redundant/tortuorouse colon, Lost 50lbs. Needed to anyway, pain always, constipation, spasms, bloated, looks like I'm carrying twins. horrible situation, daily basis. Going to get second gastroentologist. Sleepy, dizzy, not functioning well, Any suggestions help would be appreciated? Lesley

REPLY
Profile picture for Kanaaz Pereira, Connect Moderator
Kanaaz Pereira, Connect Moderator | @kanaazpereira | May 24, 2019

Hi @lotsofpain,

You may notice that I moved your message to this "Redundant / Tortuous Colon” discussion as many of the members have posted about pain in the colon;
I thought it would be beneficial for you to connect with them and read about their experiences.
Could you share more details? Have you been diagnosed with any digestive conditions?

REPLY
1 reply
Profile picture for lotsofpain
lotsofpain | @lotsofpain | May 24, 2019

These days I find that I get more Colon Pain after passing stool any thoughts

REPLY
Profile picture for cielo
cielo | @cielo | May 21, 2019
In reply to @scvkpete "On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and..." + (show)
Profile picture for scvkpete @scvkpete

On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and the procedure was somewhat difficult. At age 50, my first colonoscopy showed my colon completely normal. I don't know why the change, although I did have 3 surgeries in a short period of time. I have increased gas and have small (rabbit-like) BMs each time I void. I also have normal bowel movements. Anyone had anything like this happen to them?

Jump to this post

Hi. I have the same problem, in 2012 at 58 years old. I had a colonoscopy for having belly pain, the colonoscopy was normal without problems, now in March I had the second one, it was so painful that I promised never to get one again, if I do not have general anesthesia, and the diagnosis was
was that l have Tortuous Colon, the doctor's they do not know why, nor I, and they do not agree, my family doctor tells me to eat normal but with more fibers, and try not to be constipated, it is dangerous.
The Gastroenterologist Dr. tells me "or that is nothing, you have a nervous colon, relax and take medicine for depression, this will help you"
I started my medication two weeks ago, I do not know what happened, but it really, really depressing that nobody can help you, I take Metamusil every day, I will tell you how I feel, in a month. I hope you are better, and maybe this will help you, take care of yourself.

REPLY
Profile picture for courtneyt
courtneyt | @courtneyt | May 21, 2019
In reply to @scvkpete "On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and..." + (show)
Profile picture for scvkpete @scvkpete

On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and the procedure was somewhat difficult. At age 50, my first colonoscopy showed my colon completely normal. I don't know why the change, although I did have 3 surgeries in a short period of time. I have increased gas and have small (rabbit-like) BMs each time I void. I also have normal bowel movements. Anyone had anything like this happen to them?

Jump to this post

Similar situation here -- had 1st colonoscopy at about 55 and just had second one at 70. Nothing deemed "wrong" either time except that now, at 70, I was told I have a redundant or tortuous colon. Who knew? I thought this was a congenital and rare condition, not something somehow acquired over the years. Interesting that you, too, seem to have 'acquired' the tortuous colon. What is going on?

My problem is that suddenly, months ago, I started having constipation, like I had as a youngster, so I had the 2nd colonoscopy to see if there was a problem. But, like you, I can have 'normal' BMs too. Trouble is, I get "backed up" and then have the opposite problem: huge loose BMs accompanied by loads of lower region cramping/pain. Not fun.

I don't remember this happening since those episodes of more than 35 years ago. I'm seeing the GI doc this week but I'm sure he will say it's IBS and throw Miralax packets at me. I also have GERD so feel like I've got double-trouble.

Oh, and my gall bladder was removed in '04 due to horrible pain attacks and 'sludge,' not stones, but I never got the post-cholecystectomy 'dumping' (frequent diarrhea) syndrome that so many experience after that surgery. I have heard that many years later problems crop up for some people for the first time. Perhaps I'm one of those people and will now be plagued with this into old age.

Hope you are feeling better and have gotten some answers to your own questions.

REPLY
2 replies
Profile picture for virginia44
virginia44 | @virginia44 | May 21, 2019
In reply to @scvkpete "On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and..." + (show)
Profile picture for scvkpete @scvkpete

On my 2nd Colonoscopy at age 55, I was diagnosed as having a Tortuous Colon and the procedure was somewhat difficult. At age 50, my first colonoscopy showed my colon completely normal. I don't know why the change, although I did have 3 surgeries in a short period of time. I have increased gas and have small (rabbit-like) BMs each time I void. I also have normal bowel movements. Anyone had anything like this happen to them?

Jump to this post

I have had the same issues, and also had my gall bladder removed. I have been wondering if the cause of my redundant colon was gall bladder removal. The dripping of bile acid from the liver, and/or the use of cholestyramine to control the negative effects of the bile acid maybe caused the tissue in the colon to change?

My doc also put me on anti-anxiety meds (amitriptyline) and it has helped calm things down, so I have less cramping and diarrhea. I also take dicyclomine which helps with cramps.

Another respondent below discussed the Deloyers procedure to remove part of the colon, and apparently it helped. I saw a video on TV about a young patient with severe diverticulosis that prevented him from growing. So the doctors did a complicated procedure of remove a lot of individual pouches of inflammation and it cured him. I don't think Deloyers is for me, but the other surgery might be the solution. I'm going to look into it further.

REPLY
Profile picture for cielo
cielo | @cielo | May 21, 2019
In reply to @courtneyt "Similar situation here -- had 1st colonoscopy at about 55 and just had second one at..." + (show)
Profile picture for courtneyt @courtneyt

Similar situation here -- had 1st colonoscopy at about 55 and just had second one at 70. Nothing deemed "wrong" either time except that now, at 70, I was told I have a redundant or tortuous colon. Who knew? I thought this was a congenital and rare condition, not something somehow acquired over the years. Interesting that you, too, seem to have 'acquired' the tortuous colon. What is going on?

My problem is that suddenly, months ago, I started having constipation, like I had as a youngster, so I had the 2nd colonoscopy to see if there was a problem. But, like you, I can have 'normal' BMs too. Trouble is, I get "backed up" and then have the opposite problem: huge loose BMs accompanied by loads of lower region cramping/pain. Not fun.

I don't remember this happening since those episodes of more than 35 years ago. I'm seeing the GI doc this week but I'm sure he will say it's IBS and throw Miralax packets at me. I also have GERD so feel like I've got double-trouble.

Oh, and my gall bladder was removed in '04 due to horrible pain attacks and 'sludge,' not stones, but I never got the post-cholecystectomy 'dumping' (frequent diarrhea) syndrome that so many experience after that surgery. I have heard that many years later problems crop up for some people for the first time. Perhaps I'm one of those people and will now be plagued with this into old age.

Hope you are feeling better and have gotten some answers to your own questions.

Jump to this post

Thank you for your response, it is a pity that we can not have a correct answer to our questions, the doctors tell you, get used to this new life, nothing can be done, nobody has told me about the operation of removing part of the colon, if the pain continues, or I have to take pills to control the colon maybe this is the only solution to take, although I panic to enter another operation, and the preparation for it.
Thanks for talking about this problem, it helps me a lot.
Hope you are better. Take care.

REPLY
View MoreView Less
Please sign in or register to post a reply.