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 Ingegerd Enscoe, Alumni Mentor @astaingegerdm

@kjn72 - It sounds like you have very poor motility. The goal for you now would be to try medication that improves motility, along with some meds you are trying now.
I am now on Motegrity and Amitiza and it works ok for now. Much better than before when I only had laxatives.
One of my Mayo doctors also had me do warm water enemas twice a week for a few months. It did help some, but I’m not fond of it.
There are things to try before resorting to colectomy. Just make sure to stay in touch with the doctor

Jump to this post

Was on Motegrity for quite a while, also with Amitiza. Been through every other gi med. problem now is that’s where once I was using 1-2 mg of Motegrity, now 1/2 sends me to diarrhea. Can’t find right combo of meds to get normal stool. Either not enough to move, little more and it’s too much. At least the Bethanechol and IBGuard combo is the first in years where I don’t feel “sick” all the time and the pain is better, after a few days of not enough, then I go to Dulcolax. Not perfect, but it’s only one day a week I’m stuck in the house as opposed to almost every day!

REPLY
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

Jump to this post

@kjn72 - I have read about the concept of a gastric pacemaker- that’s what we need! Are they in use?
Motegrity is a motility drug and moves things along at pace much better than what we are dealing with now.
It is also expensive, up to $200 a month. I ration it. I’m looking into getting it from a Canadian v pharmacy.
Medicare patients don’t qualify for manufacturer’s coupons.

REPLY
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

Jump to this post

@astaingegerdm, thank you for replying. Yes, motility is very slow. I have tried many meds, including Amitza, Linzess, Trulance and many others. With Trulance, I had bowel movements felt bloated and uncomfortable all day, and I had numerous bowel movements daily (Trulance is $600.00 monthly for me, very expensive)
I don't want to trade problem for problem by having a colectomy. Have you heard of a gastric pacemaker to help with motility issues?

REPLY
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

Jump to this post

@kjn72 - It sounds like you have very poor motility. The goal for you now would be to try medication that improves motility, along with some meds you are trying now.
I am now on Motegrity and Amitiza and it works ok for now. Much better than before when I only had laxatives.
One of my Mayo doctors also had me do warm water enemas twice a week for a few months. It did help some, but I’m not fond of it.
There are things to try before resorting to colectomy. Just make sure to stay in touch with the doctor

REPLY
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

Jump to this post

To Sally, thank you very much for responding and for the info. I will ask my doctor about the medication.

REPLY
Profile picture for kjn72 @kjn72

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

Jump to this post

I just had a gi recommend same as being “the” answer to my years of pain and suffering. Said it could give me my life back. I did join a blog but it sounds like I would be just trading one set of problems for another. I did agree to a consultation with a surgeon bc I was feeling esp awful that day. Why not hear what he has to say? Things would have to get pretty bad to get to that point. Newest Gi
Has me trying Bethanichol, an off-brand use to increase motility. Having varying success but I do “feel” better than I have in months. Also, daily IB Guard. And it really is helping. Not perfect, but he and his nurse are working with in hopes of
finding something that does work.

REPLY

JN: I am a 72y/o woman with severe constipation & a redundant colon. 7 years ago I had 14" of colon removed and 3 additional surgeries for a rectocele, entrocele and another bowel prolapse. I have been severely constipated before and after surgeries. I have tried evert kind of otc med, laxatives, fibers and many prescribed meds, drink 1/2 gallon of water, swim 4-5 times weekly, do zumba nothing works. I have thrown up after 6 days of not going. I have pains in right upper and left lower abdominal areas. I am enema dependent to empty my bowels, it is a painful process and can last for 3 hours every time I do it. 2 surgeons recommended colectomy, 1 did not. 1 GI recommended surgery, 2 did not. I am a young 72 and want to continue living actively with less difficulty. Anyone have surgery that worked, and what kind to eliminate this problem? I have been told that colectomy can also produce bloating, gas, things I am already dealing with. Thank you for your help
JN

REPLY
Profile picture for trishh @trishh

@sallyw133 I so understand. My husband and I are separated, he got crazy and I had to leave my beloved Florida to move back to hills. So upsetting. Which makes health issues worse.
Anyway, I wish you the best. I am suffering so this morning where I had the endometrial biopsies. It may be November before they get me in to check for cancer! My GP told me to be patient yesterday as I couldn't get in any sooner elsewhere. I am so tired of it all. Feel like my tortuous colon is hurting in response to where they did biopsies???
Very sensitive to procedure due to small fiber neuropathy which affects organs too.
We got to hang on my friend, our health care system is a mess. I am disabled RN and sad at lack of care and nurses leaving.
Hugs... ❤️

Jump to this post

Hugs to you, as well!

REPLY
Profile picture for anniez @anniez

Yes, I have it. Years ago surgery at 28 for exploratory lap. Had history exposure to chemicals in research lab. Saw this diagnosis on my CT colonography scan in 2017 after my new GI doc couldn’t get a regular or pediatric scope in. I’m in my 70s. I’m careful about food choices as I also have diverticuli. A damaged ileocecal valve from previous colonoscopy also makes things challenging. I would recommend the Monash university app as it is best I’ve found so far. It is often the quantity of certain things eaten. A strict fodmap diet can cause nutrition problems over a long haul. It is not free app, about $8. I’m retired NP and diabetes educator. I’ve seen the wide swings in dietary advice. It can be confusing. Different health care providers don’t always have good background in nutrition. Moderation in all things. Good luck.

Jump to this post

Thank you for the response and I hope you have more good days than bad. I'm just tired of being in pain and seeing my life pass by. This was definitely not the life I had in mind growing up lol. Gotta take one day at a time and enjoy the good days as much as possible.
Just turned 50 and boy do I miss working and doing all kinds of things that I can't do now. Best wishes for us all ❤️

REPLY
Profile picture for sallyw133 @sallyw133

I have that, too. I believe it’s called visceral hypersensitivity. I believe all of my issues started with my migraines. Either the pain itself or the numerous medications over the past 30 years. Now it seems like every week it’s another thing I have wrong with me. My poor husband it about ready to lose his mind. Had hopes of doing all this traveling once he retired. We do travel. But to doctors apts! Not quite the same.

Jump to this post

@sallyw133 I so understand. My husband and I are separated, he got crazy and I had to leave my beloved Florida to move back to hills. So upsetting. Which makes health issues worse.
Anyway, I wish you the best. I am suffering so this morning where I had the endometrial biopsies. It may be November before they get me in to check for cancer! My GP told me to be patient yesterday as I couldn't get in any sooner elsewhere. I am so tired of it all. Feel like my tortuous colon is hurting in response to where they did biopsies???
Very sensitive to procedure due to small fiber neuropathy which affects organs too.
We got to hang on my friend, our health care system is a mess. I am disabled RN and sad at lack of care and nurses leaving.
Hugs... ❤️

REPLY
Please sign in or register to post a reply.