Anyone else have a Redundant / Tortuous Colon?

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.

Thank you cuddle bug . Very interesting, I shall have to read it another couple of times to digest it as it’s soooo long ! ( pardon the puns ).
But it’s always of interest to see how others cope and try different things 🙏
Best wishes
Sheila

@lydiavargas

Thanks for the feedback and best of luck. Don't give up until you find what works. I just did some of my morning ex's that help my body waken up the gut and colon that really is a good way to start the day too. I sometimes wonder is sitting worsens the situation since we with redundant have more to keep in a relative smaller area. I'm not overweight but still I saw the folds my colon has to take when I was able to join my Gastrologist for the colonoscopy show of my colon. It was amazing how he had to wade through them. Yep don't give up the faith and consider opting for a diet and lifestyle that supports a longer than normal pipe.
@farmersmith

I’ve been dealing with weight loss, diarrhea, bloating, gas feeling full and acid buildup. I had my first colonoscopy/ upper endoscopy and it revealed that I have a torturous colon.I’m currently taking anti diarrheal, acid reducer and nausea meds as needed.
I’m very interested to hear about what foods are easier with this issue/ issues. I have not had much luck with most foods except bland.

I have IBS-C, a severely redundant (long) colon and a legion of food intolerances and brain-gut issues. Could your diarrhea be IBS-D? I assume you have checked for a bacterial issue. Usually constipation occurs with a torturous colon.

I was also just diagnosed with torturous colon following
a colonoscopy. Prior to this diagnosis I had diarrhea.
I was prescribed Cholestyramine. It is very helpful.
I take it daily and no more diarrhea.

Im waiting on biopsies and follow up with my GI doctor at the end of the month but I will definately ask to see if this will help me. Thank you

Yes, my doctors are checking everything as it’s been months and I’m still loosing weight and having diarrhea. I understand constipation is more so related but diarrhea is also a symptom. I’m still waiting on biopsy results

shortiseltzer,
My reply has some jest.🤪
Be happy you have diarrhea and weight loss vs chronic constipation and weight gain. The doctors have no problem blaming the patient, for everything, when there is weight gain involved. Diarrhea trips can count toward your 10,000 steps a day.🥴
The best foods for diarrhea, nausea, and constipation are- 3 saltines, followed by sips of 7-up.
Bland- is perfect for food and whatever your gut is telling you.
A journal was suggested by another member (I'm sorry I forgot your name). Track everything, going in, coming out, 💩💩description. See if you can connect a food, to a time of day, to resulting symptoms. Also track meds .I have been doing this for 17 years , it has provided me with some connections. A secondary benefit of the journal is, you can prove to YOURSELF and doctors that you are indeed in pain.
I know you are in pain and distress and it 👿👎🏼🤬. You are definitely in a great forum to learn and share. I hope you get answers and relief soon.
Good Vibes coming your way, ShelleyW

Hello @shortiseltzer and welcome to Mayo Connect. As you can see, Mayo Connect is a great way to learn from the experiences of others. You are probably glad to find the reason for the diarrhea and weight loss.

While you wait for the biopsy results, you might try keeping a food diary, as suggested by @shelleyw. This might give you some clues as to any foods that are triggers for diarrhea.

I look forward to hearing from you again. I hope you will continue to share your journey with this diagnosis. When do you expect to get the biopsy results?