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.

@joisey

What kind of relaxation therapy? Do you massage yourself?

I also have leaky gut syndrome, can't eat dairy or yogurt or goat or sheep milk products, can't eat gluten, soy or rice, and took a special blood test in which I found that I cannot process many different foods. Oh, I haven't eaten meat or poultry for 61 years, and I don't eat shellfish. Good thing that I am not a foodie!

Jump to this post

I had the leaky gut and the MRT ($500 blood test for food intolerances) about 2 years ago..and worked with a nutritionist for about 6 months.. it wasn't exactly right for me.. I had an antiphallic reaction to her Vitamin D drops (which she didn't know could happen..I called the company and they said "yes!! stop them" and I told her so she could inform others).. There's a way to tell if you're having an allergic reaction..I was told by a nurse.. get one of those things they put on your finger (for pulse..??) and if it goes up then it's started..(I live very rural and keep an epipen)..Also have you been tested for Alpha Gal.. we have alot of that around here.. from a tick bite.. and you can never eat anything that "has fur" on it again.. beef, milk.. etc.. it's a simple blood test... (also did you know gluten can be found in lipstick and some makeup and hair products?.. The leaky gut is a tough thing to cope with.. bless your heart..I'll pray for you!!

REPLY
@vicscats

I have it! I barely go anywhere! I’ve asked to get part removed!? Nope!
Dr says next time I get a blockage to go to Er! I do not like going there. I can’t even move when a blockage is in process. I actually was even in hospitol a couple times as child. They called it telescopic bowel back in the days. It’s difficult to manage
Does anyone take laxatives?
Vicki

Jump to this post

I have it! I barely go anywhere!! Just dignosed..I use biscadyls (3) sometimes several time a week.. every few days to prevent a blockage.. have tried Linzess,.Amtisa, IBSrela and now Trulance..Miralax.. to no avail.. drink lots of water and watch diet.. but still have to take the biscadyls.. and they make me sick and about 8-12 hours I go and go and go..I do not like ER!! Am waiting on my GI to send me to a surgeon to do a bowel resection..I hope this helps you!! prayers coming your way!!

REPLY
@standinginfaith

I had the leaky gut and the MRT ($500 blood test for food intolerances) about 2 years ago..and worked with a nutritionist for about 6 months.. it wasn't exactly right for me.. I had an antiphallic reaction to her Vitamin D drops (which she didn't know could happen..I called the company and they said "yes!! stop them" and I told her so she could inform others).. There's a way to tell if you're having an allergic reaction..I was told by a nurse.. get one of those things they put on your finger (for pulse..??) and if it goes up then it's started..(I live very rural and keep an epipen)..Also have you been tested for Alpha Gal.. we have alot of that around here.. from a tick bite.. and you can never eat anything that "has fur" on it again.. beef, milk.. etc.. it's a simple blood test... (also did you know gluten can be found in lipstick and some makeup and hair products?.. The leaky gut is a tough thing to cope with.. bless your heart..I'll pray for you!!

Jump to this post

Woops!! Correction to the above..I was wrong.. The finger thing to the nurse said to use to see about an allergic reaction is a Finger Pulse Oximeter (can buy on Amazon for about $10) and she said the normal number was 92 and if it goes DOWN..you're beginning to have an allergic reaction.. it won't detect intolerances.. allergies and intolerances are 2 different things..

REPLY

Try this it works for me , a spoonful every morning.

REPLY

I’ve had 73 years of constipation caused by the redundant ( tortuous colon ). At long last I have relief.
I would love to have the colon cut and take out a chunk to enable the remainder to sit comfortably in its allocated space . However I think there are risks to the op.
My worry is that if I become old and senile 🤔 no one else will be able to manage my bowels like me !!!!
I read that someone elderly in a home in those kind of circumstances actually dieffenbachia a blocked bowel ☹️ it’s a worry 🤷‍♀️

REPLY

Died of a blockage in the bowel. That what I meant to write above… predictive took over …

REPLY
@kanaazpereira

Hi @onaquest @flguy @carcar,

A redundant colon is an abnormally long colon, especially in the final section (called descending colon). A redundant colon also has additional loops or twists. Other names for a redundant colon include tortuous colon or elongated colon. https://www.healthline.com/health/redundant-colon
I’m tagging @darlia and @rsinger22 who've written about redundant colon, and they may be able to share their experiences.

Jump to this post

I also have this just had a Colonoscopy on Monday after my surgery one year ago. I had a blockage on the left side and could not have a bowel movement. I had stool and blood coming out of my urethra. I went to two different emergency departments for help. Five months later I had surgery to have the left side removed and also had a fistula attached. I also had a fistula attached to my bladder.
I have blood spotting still from my bladder and produce air bubbles. I am seeing a kidney doctor and a urologist and had a scope and she could see the bubbles which is not normal. I also received a new rectum from the large colon.

Now I am waiting the two weeks to see if something is wrong with my stomach and the large colon is doing the same thing. I feel like here we go again.

REPLY

Mine collapsed on the left side and had blood and fecal coming out of my urethra. I did have surgery and had a lot of it removed and a fistula. So if that happens go to the emergency room. I still have the problem on the right side so it will probably happen again.

REPLY
@lesliejones

Hi, I have a torturous colon and have had bouts of constipation, some diarrhea, stomach pain and nausea. I am taking Konsyl Daily Psyllium fiber capsules, Florastor Probiotic, and MiraLax when constipated for a few days. I take ondansetron for nausea. (Prescription). About 5 years ago I was diagnosed with SIBO, but that was treated with a special antibiotic and was on a strict diet. That is gone now. I took Iberogast which helps with motility last spring…was great for awhile, but ended up with diarrhea. I recently was constipated for 6 days…that was scary, but finally was able to have a bowel movement. Now I am being careful and making sure I am able to go at least every 3 days…though, my bowel movements are round pebbles, but at least I am going. I do drink coffee every day, but had not heard that it is constipating. I will try to avoid it. I am 77 years old and do not want to have surgery. I am very tired of the symptoms and not feeling well and looking for a bathroom. Trying to enjoy life, but with this it is not easy….

Jump to this post

Hi Leslie Jones

Disclaimer: This is only my experience going natural. I have used organic, integrative, functional, holistic Naturopathic doctor's advice along with my MD’s since the early 1980's. There is science in alternatives too. Because I work closely with my ND, he told me to study the Migrating Motor Complex and Osmotic Gradient and he bet that I would find what worked for me. How to keep a longer than normal pipe with consistent moisture…. My ND also said because my condition was physical, attention would be needed from now.
I tried laxatives and they are not consistent and have side effects like bloating, etc. All say for occasional use. They disrupt the system if take continuously. I liked a response from a co-redundant colon person: “It’s physical” so regular constipation suggestions may not work. (for me psyllium made me constipated) Don’t give up because it took me 4 months to feel I could depend on being regular. It is worth going natural. Trial and error with observation and keeping notes has worked for me.
Last Dec the doc had me do non sedated colonoscopy. He could get through my colon as I watched on TV. I had had a baby years ago (natural and so could stand pain) I figured I could stand it – it was no big deal. Most people in world don't get put out. Very interesting and it helped allow the scope to get through easier because I relaxed. No wonder I had been constipation on and off starting in my teens. I’m now in my early 70’s.
OptiMag and K2+ Potassium are great supps. I take them when I go to bed and once when I get up to pee. I include prunes/prune juice, winter squash, sweet potatoes, rhubarb etc in my diet. I eat cups of steamed vegetables each day. I like to grind 2T chia, 1 T sesame seeds and 2 T flax seeds, then soak in prune juice overnight. I add a T of carob now since it can help regularity. Take half in the morning and half at night. Throw sugar out of your life along with processed and refined foods. Look up foods and drinks that constipate and give them up. Drink lot of water starting with a quart of hot water in the morning - boy scouts. I use warmed up diluted chicken broth at times too. It is soothing to my stomach. Coffee and Smooth Move are my back ups. I don't like coffee and never have drunk it much but it usually works for me in a pinch. Thankfully I only need coffee a few times a month.
Check out helpful research of biological processes that take place in our gut:
- Migrating Motor complex which is the electroactivity in the GI tract during meals and fasting
- Osmotic gradient. If too much water is pulled into the colon, diarrhea results. If not enough water is pulled into the colon constipation results. Balance of minerals is important. Magnesium, potassium and sodium brings water into the colon. I have found balancing these by taking them in the middle of the night too help prevent constipation. I have to watch my calcium intake because it tends to encourage constipation. Calcium carbonate seems to be the most constipating. I depend on blood work from time to time to make sure my minerals are balanced.
Ask your friends if they know of an Integrative or Naturopathic doctor and give them a chance to share new ideas! You can become regular too, it is great but takes some testing and continued action.
Good luck and blessings, @farmersmith

REPLY
@sheilagreen

I’ve had 73 years of constipation caused by the redundant ( tortuous colon ). At long last I have relief.
I would love to have the colon cut and take out a chunk to enable the remainder to sit comfortably in its allocated space . However I think there are risks to the op.
My worry is that if I become old and senile 🤔 no one else will be able to manage my bowels like me !!!!
I read that someone elderly in a home in those kind of circumstances actually dieffenbachia a blocked bowel ☹️ it’s a worry 🤷‍♀️

Jump to this post

Hi Sheilagreen,

I might be able to help somewhat, since I've had some pretty consistent success in about the last 4 weeks. (That's a long time given what we have!) I've had 72 years of constipation caused by a redundant (tortuous) colon. I was born with it (I remember even my earliest days as having a big problem with constipation). When I was young, my parents weren't too concerned. As soon as I could potty on my own, they just weren't aware of it much and if I mentioned it, they said don't worry its probably something you ate. I already loved vegetables and hated meat, but they'd tell me to eat more vegetables. Sigh. It is only in the last couple years that I had it diagnosed. Saw it on a CAT scan, that I begged my doctor to order for me. Unlike you, I do not want that surgery. Surgery is a major event and I don't want to take the risk and I also know a couple people who have this, went that route, only to end up much worse off a couple years later. Yes, there are risks to the op.

I also worry that if I become old and senile, no one will know what to do. You need to write down what works (once you find that), put it in a health care directive so that you receive the same kind of approach, and don't have surgery for this (because of some intern who wants to operate and is tired of hearing about your troubles).

Okay, now that we have avoided dieffenbachia of a blocked bowel (ha ha), try to relax and read on. The first thing I did was try to clean myself out. This involved taking 3 Dulcolax, and waiting for results that took 2 days. Wasn't fun, but after a couple hours of unhappiness, I felt great and it was wonderful to feel "empty." My mistakes were being afraid that fiber would clog my colon worse....it won't as long as you don't eat tons of fiber at once. This is nothing to worry about (especially since you're cleaned out). Then I started slow (because my intestines were unhappy and kinda sore), having gluten free oatmeal for breakfast (gluten will cease to be an issue in a week or so), or raisin bran (a big bowl of it that soaked in water....yes water...for a few minutes first). It was mush. You don't want anything difficult to digest. I began by skipping lunch (not sure this is necessary in retrospect), and then eating a soft dinner of something like fish and vegetables. Please try hard to stay away from sugar, especially at the beginning. In a couple days I was eating the same kinds of things, but I added lunch which is creamed soup or broth or anything that might have tiny chunks (like clam chowder) but not anything with more stuff in it than broth, or noodles. In two or three weeks you'll be able to transition to things with rice and chunks of meat, etc. Best to make it homemade, but I have a busy work schedule so I can't always do that. (By the way, you can increase resistant starch in rice by cooking it, letting it cool, putting it in the refrigerator for 24 hours, and then warming it up when you want to eat some. This is great for the gut.) Drink a lot of water or something healthy like Suja brand juice (no sugar in it) during the day. By hydrating the colon and putting soft foods in it, everything really does move through much more easily. Things will get much better after 2 weeks (or less). In the meantime, if they aren't great, don't give up. Stick with it.

I have a twist in my sigmoid colon, so things still have a little trouble there. No more pain anywhere, though. I used enemas often, which are so immediately effective that I sometimes wonder why I use them. I can say I'm having normal bowel movements some of the time, on my own, without difficulty. I get the urge, and I go. Just like people without this problem. Its absolutely wonderful. But more often than not, I need the enema to get past the twist.

Anyway, I've added fish, vegetables, applesauce, now hamburgers (not the bun yet...trying to be really careful as I am not in pain, not in difficulty, going to the bathroom on my own half the time, and don't want to lose this success), other cereals (soggy), etc. One day recently I was so very hungry with not much in the pantry/fridge that I grabbed a piece of rye bread (my spouse is usually eating normal things), a pat of butter, and a couple slices of cheddar cheese. Really bad stuff, but delicious. I settled for half a grilled cheese sandwich by cutting the one slice of bread in two (just so you know what I did). I ate the whole thing. Afterward I figured I would pay dearly for it. But I didn't. Never noticed a problem. Bear in mind that this is the exception, not the rule. If you're really hungry, a saltine cracker or two (not 10 of them) won't mess up anything. I've also found I can now eat homemade chocolate chip cookies, as long as I eat only a couple, and with a nice meal I ate first. I snack on raisins, fresh dates, and prune juice. Yes, some sugar there, but not out of the sugar bowl at least.

There is hope! Everybody's situation is at least a little different, but we're the same age, have the same issue with the colon, and I think this would help you. Be strict the first 2-4 weeks. Then allow tiny deviations. Don't ever abandon the very soft diet entirely because that's what's making all this work.

Occasionally this isn't going to work but I can always start over. I sometimes eat out and institutional dinners don't include soup usually. I haven't done salad yet (because my colon was sore when it was finally getting a chance to heal) but I'm sure it will be fine. I am not a doctor but I have this theory that because the colon is longer than its supposed to be, no matter what you do, things will dry out by the time they get to the other end. The body extracts the water, and things get too dry which causes pain and very sluggish movement.

One other thing I do to help is take a supplement called EMMA. Its a natural supplement but it has some things in it that make the colon slippery. (You could probably just supplement those items, if you researched it.) I did not notice any difference when I was bad and hadn't done what I just described. I almost gave up on it. But once life was doing better, I went back to it and was surprised how much of a difference it makes now that I'm not already clogged up to an extreme degree. (I am not a doctor, and do not have any affilation with EMMA. I do not work in the medical field.) Now this is just what works for me. Might not work for someone else. But it seems like it should so I'm sharing.

My spouse cannot believe I'm not living in the bathroom with a diet like that. The truth is, I'm just approaching normal. And its wonderful. Best wishes.

REPLY
Please sign in or register to post a reply.