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

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@jayjay12

So sorry! It takes more than just Miralax or the like to help with the problem of a Tortuous Colon. I’ve suffered with it myself for as long as I can remember. I was told more fiber, fresh fruits & vegetables. That was it and it was after my colonoscopy. Of course, one doctor said I had then he moved. The next doctor said no you don’t. I also have IBS. My colonoscopy have been very difficult for them to do as long as I recall, and often I’d feel the pain while they were doing it! I’m in a new state now, and the GI doctor here says I DEFINITELY have it! So again told me to eat extra fruit and vegetables, and take Citricel or the like. Taking a fiber supplement actually backs me up more! I drink plenty of water too, always have. That isn’t the issue. So I stated just recently really focusing on the types of more seriously. Staying away from dairy, gluten products and processed food for the most part. Are you familiar with the FODMAP. You can try that form of illumination and see what sets you off. I’m really doing great now. I’m eating a lot of raw food when I can. Smaller amounts too. It’s a process for sure! I’m going to get this yet! They tried me on the Linzess and that was really a NASTY medication!! Terrible side effects. I wish you all the best in your search. Maybe a Nutritionist would help?

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@jayjay12 Welcome to Mayo Clinic Connect. So nice to hear that you are doing great. I am glad you found something that helps with your symptoms and that you have connected with @dablues to share your advice.
When were you diagnosed with Tortuous colon? Is your diet the only thing that truly helps?

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@dablues

I'm sorry I didn't also say I was to be on a high fiber diet, and he also wants me to do metamucil, but I don't like metamucil. I was taking Fiber Capsules but switched to adding prunes, chia seeds, and Flaxseeds. Do you think the Fiber Capsules I used to take would be better? I should have stated that. It was my fault. I have problems with lots of medications and side effects. Yes I'm aware of FOODMAP but should look into it. Thanks for your input. One of my problems, and I kNOW it, is that I don't chew my food properly. Got into the habit when I used to work and was on a 1/2 hour lunch to eat faster than normal and never got out of the habit. I have a problem with Constipation/Diarrhea too. I was tested for Celiac Disease but don't have it. Also was tested for Lactose intolerance but don't have it, but I do use Lactaid anyway. I was never told I had IBS but something is not right. I just had by Endoscopy/Colonoscopy yesterday afternoon. Thanks for your rely. Nutritionist sounds like a good idea. I am a small eater, but am unsure why the weight gain.

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Hi dablues, Sometimes I found that things like “fiber” capsules are just too much. They have the opposite effect on my system and add to my constipation. Since you have both constipation & diarrhea, it’s going to take finding that fine line to try and get things balanced. Personally, foods like prunes, dried apricots I feel are great! But it’s easy to over for it and end up with some diarrhea and especially chia seeds & flax seeds. I’d say try using just one or half the amount. How many prunes do you eat? Try different amounts. Pay attention to foods that may bloat you also. Do these prunes do this. Do you consume them in the evening? That would be best. Like a dessert. Then get plenty of water 20 minutes after you eat. Drinking with a meal will dilute your stomach acids and that will make it harder for food to break down. I totally understand the not chewing well also, I have the same problem from the same previous work schedule!! It’s hard to break old habits! Just keep consciously working on it. Put your fork down between bites.
Much of our fiber intake should be from vegetable & fruit period, raw is best. I strongly encourage you to look into the FODMAP Diet. I’m not lactose intolerant per-say either but just do better staying away from most of it. Certain dairy items sour my stomach. If your on a lot medication that could be adding to your problems. Sometimes there are interactions that our doctors and even pharmacists don’t tell us about. You can check all that out on Drugs.com.
The trouble with your weight gain is probably hormone related. Cortisol levels, etc. I’m 63 and adrenal glands are a mess I recently found out. Plus menopause! Weight loss is so hard right now!!
Keep exploring and trying a few things differently. I bet you have IBS also. Look up what that is and see what you think.
My go to breakfast is a Pea Protein Powder mixed with Almond Milk. You can add your flax & chia seeds and some fresh fruit in it too in a blender. Even some greens! So delicious!! Then just eat the prunes separately in the evening.
Do you live in Arizona?

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I'm sorry I didn't also say I was to be on a high fiber diet, and he also wants me to do metamucil, but I don't like metamucil. I was taking Fiber Capsules but switched to adding prunes, chia seeds, and Flaxseeds. Do you think the Fiber Capsules I used to take would be better? I should have stated that. It was my fault. I have problems with lots of medications and side effects. Yes I'm aware of FOODMAP but should look into it. Thanks for your input. One of my problems, and I kNOW it, is that I don't chew my food properly. Got into the habit when I used to work and was on a 1/2 hour lunch to eat faster than normal and never got out of the habit. I have a problem with Constipation/Diarrhea too. I was tested for Celiac Disease but don't have it. Also was tested for Lactose intolerance but don't have it, but I do use Lactaid anyway. I was never told I had IBS but something is not right. I just had by Endoscopy/Colonoscopy yesterday afternoon. Thanks for your rely. Nutritionist sounds like a good idea. I am a small eater, but am unsure why the weight gain.

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@dablues

I have a tortuous colon and was never told to do anything other take miralax, drink water, take stool softeners, and I have a colonoscopy and endoscopy tomorrow and I don't feel well at all. I feel like the pit of my stomach is bothering me. I do know they have problems doing my colonoscopies over the years. They get stuck in two places and I have been complaining this past year of problems with going to the bathroom and am just told take a double dose of miralax and to eat high fiber foods

Jump to this post

So sorry! It takes more than just Miralax or the like to help with the problem of a Tortuous Colon. I’ve suffered with it myself for as long as I can remember. I was told more fiber, fresh fruits & vegetables. That was it and it was after my colonoscopy. Of course, one doctor said I had then he moved. The next doctor said no you don’t. I also have IBS. My colonoscopy have been very difficult for them to do as long as I recall, and often I’d feel the pain while they were doing it! I’m in a new state now, and the GI doctor here says I DEFINITELY have it! So again told me to eat extra fruit and vegetables, and take Citricel or the like. Taking a fiber supplement actually backs me up more! I drink plenty of water too, always have. That isn’t the issue. So I stated just recently really focusing on the types of more seriously. Staying away from dairy, gluten products and processed food for the most part. Are you familiar with the FODMAP. You can try that form of illumination and see what sets you off. I’m really doing great now. I’m eating a lot of raw food when I can. Smaller amounts too. It’s a process for sure! I’m going to get this yet! They tried me on the Linzess and that was really a NASTY medication!! Terrible side effects. I wish you all the best in your search. Maybe a Nutritionist would help?

REPLY

I have a tortuous colon and was never told to do anything other take miralax, drink water, take stool softeners, and I have a colonoscopy and endoscopy tomorrow and I don't feel well at all. I feel like the pit of my stomach is bothering me. I do know they have problems doing my colonoscopies over the years. They get stuck in two places and I have been complaining this past year of problems with going to the bathroom and am just told take a double dose of miralax and to eat high fiber foods

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Very late here, but my redundant colon has led to me having diverticulitis. Bouts of constipation caused it.

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@carcar

Is this the same condition as Diverticulitis?

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No, it’s not.

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@personalhell

I'm sitting at the 4 week after colonoscopy diagnosed with severe tortuous colon and sent home. In constant discomfort but I've got the screaming and fainting pain under control since they did a major clean out when they found stool stuck in the walls of my ascending and in the cecum having to force it out. I got home and was still pooping. I saw the top surgeon in the area and was told there was nothing they can do but remove the colon completely because they can't take out just the twisted almost closed section. I'm down to eating mushed up food as I found solid food is the enemy. But I am miserable. And scared. I am scheduled for rectocele surgery April 4.. That was a terrifying moment when I did that, I made the mistake of pushing. I usually can only get any out if i push it out with my thumb but even that wasn't working. I was diagnosed years ago with hemorrhagic gastritis and gastroparesis by colonoscopy after I luckily cleared out my impacted colon. I had drunk too much water n not enough food and was severely deficient of potassium. I was ok for years except for a lot of bouts of symptoms here n there. I'm on lifetime potassium replacement therapy. I found that magnesium was to help better than M. O. M. so I picked up a cheap bottle n had decent results so I searched extensively for the best out there n came across Synergetic Magnesium Complex... Extra strength 500mg. It worked perfect till I did one of the bipolar no no's n stopped taking them without realizing or understanding why. I am back on it and now I'm going quite a bit every day but that leaves me with the feeling of a constant period cramp. I'm so glad I found this group cause the GI only recommended a virtual colonoscopy in 3 years and return to previous diet... That's it! Same with the surgeon, he basically refused to help because I'm still so young... 48... n he'd have to take it all and I'd be on a bag. Nothing else. WHY don't they tell you ANYTHING? SOMETHING? With it being rare and not easy to find info on it, ya'd think they'd recommend something... Even if just referring them to a website that can offer info. Well, thanks for existing, nice to know I'm not alone but sorry you have to have it too. I'll be following along n will comment when I have ANY changes or can offer a suggestion.

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I had an anode all monometry? 2 wks later, I got the report w/ no dr. follow-up!UNBELIEVABLE

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@bonn

I'll try that, thanks! What dosage do you take?

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I take about 1 1/2 teaspoon.

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@lasirvent

I take it during the day, I believe it has more time to work. Hope this helps.

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I'll try that, thanks! What dosage do you take?

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