Tortuous colon diagnosis and diarrhea for months? help

Posted by shortiseltzer @shortiseltzer, Oct 10 10:13pm

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.

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@hopeful33250

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?

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My biopsy should be completed within 10 days. I’m going to start a journal as suggested by many members.

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@shelleyw

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

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Thank you for your reply. My name is Tonya. Yes, I would rather have diarrhea than constipation, as it can become very serious. But it still affects my daily life. Lol on the trips counting as steps. I will definitely start a journal as many members suggest. I am very happy I found this forum in hopes of not feeling alone in this unfortunate journey.

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@vicscats

Me too starting to affect my whole life at 70
Don’t know what to do!
Vic

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I hope you find answers as well and help. Wishing you the best!

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@slkanowitz

A torturous redundant colon can cause diarrhea if your bowel get so full of stool that liquid stool is forced around the hard stool that cannot be passed. This causes weight loss because you cannot eat when your G.I. tract is so full. that’s what makes you feel so bloated and uncomfortable. A CT scan will show a large stool burden, if that is the case. A colonoscopy does not show this since you’re cleaned out prior to the procedure.

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Thank you for your reply. No one has explained it to me like this but it makes sense. I had a CT scan a few years ago for kidney stones and a tortuous colon was never mentioned. Should I ask about a new CT scan?

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@researchmaven

I hope the MD finds a fix. If they do not, try changing how you eat if you haven't already. A liquidy diet for most meals helps me (I eat a lot of thin but nutritous, high protein hot cereals, smoothies and soups). Plus an extremely limited diet, which I believe is unique to me. While trying to find out what to do, I lost 25 lb and became underweight. I am now normal weight. Good luck and there is hope!

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Thank you, I am 43 and down to 108lbs, definitely underweight. I have limited my diet as I’m a server and cannot run to the bathroom in a moments notice. Beyond that, I hate having to plan my day around how close a restroom is. I have always been a “picky eater” but I have become extremely picky since dealing with this. Sometimes I give in to my food urges but end up paying for it in the long run. (No pun intended)

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Shortiseltzer -- And you don't have IBS-D, right? It doesn't have to be to tortuous colon, unless the evidence points to it (stool plug, pain, etc.). And it is not bacterial as they have checked that? I know my general anxiety can really set off my IBS, in addition to most foods. The gut-brain connection is really a thing for me. A doctor will often diagnose IBS after all other things are ruled out.

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@researchmaven

Ditto on small portions. Comparing cereal plans, I use (because I have to) LiveKuna plantain flour for my hot cereal. I cook it with liquid egg whites, pea protein isolate powder and Lactaid milk and water. 100% Stevia to sweeten. I change it up with the spices and flavorings I can tolerate. I make it a variety of ways. The longer I do this, the easier it gets.

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researchmaven,
I have to admit that your cereal ideas, respectfully, sound gross 🤢.
Hey, if it works for you, that's all that counts 😋 is the plantain flour, gluten free? If it is, would you share a simple recipe I could try.. once I get my nausea from my surgery under control. ShelleyW

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Is the tortuous colon causing diarrhea or do you have that and IBS-D or another diagnosis as well. I have a tortuous colon but I have severe chronic constipation and digestive issues as well. This extra length twisted colon just makes it much harder for me to empty.
I do not eat sugar or dairy. I’m thinking you must have something else along with tortuous colon.

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@shelleyw

researchmaven,
I have to admit that your cereal ideas, respectfully, sound gross 🤢.
Hey, if it works for you, that's all that counts 😋 is the plantain flour, gluten free? If it is, would you share a simple recipe I could try.. once I get my nausea from my surgery under control. ShelleyW

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ShellyW:

You are funny!

Yes, the plantain flour is gluten-free. A plantain is like an unsweet banana.

For a recipe, try 1/4 cup plantain flour (consider LiveKuna as it has a sweet taste and a whole-grain style appeal, and some brands have an off-taste), 2 T+ pea protein isolate, 1 cup Lactaid milk, 1/3 to 1/2 cup egg whites (you can buy a quart or pint of these), salt and your favorite sweetener and flavorings (vanilla, and more exotics like butterscotch or brandy; cocoa powder are nice), I can flavor it with a bit of pureed fruit, like blueberries.

I add 1/2 teaspoon chia powder for fiber, although the plantain flour has some. For fat, I eat a brazil nut and a walnut along side or I add a bit of coconut oil to my cereal.

Feel free to experiment. I just made up this recipe on the spot as I do not measure anything. It is hard to mess it up. You justif the egg whites still sound unappetizing, you can skip them; same for the protein powder. Protein is important though, especially to heal a difficult/inflamed gut, and egg whites are easy to digest.

I avoid commerical, blended protein powder as there is likely something in it that doesn't agree with me. I am also a "fruit and granola" person that likes to eat (and now needs to) as "purely" as I can, although everything but water in my "recipe" is processed.

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@researchmaven

ShellyW:

You are funny!

Yes, the plantain flour is gluten-free. A plantain is like an unsweet banana.

For a recipe, try 1/4 cup plantain flour (consider LiveKuna as it has a sweet taste and a whole-grain style appeal, and some brands have an off-taste), 2 T+ pea protein isolate, 1 cup Lactaid milk, 1/3 to 1/2 cup egg whites (you can buy a quart or pint of these), salt and your favorite sweetener and flavorings (vanilla, and more exotics like butterscotch or brandy; cocoa powder are nice), I can flavor it with a bit of pureed fruit, like blueberries.

I add 1/2 teaspoon chia powder for fiber, although the plantain flour has some. For fat, I eat a brazil nut and a walnut along side or I add a bit of coconut oil to my cereal.

Feel free to experiment. I just made up this recipe on the spot as I do not measure anything. It is hard to mess it up. You justif the egg whites still sound unappetizing, you can skip them; same for the protein powder. Protein is important though, especially to heal a difficult/inflamed gut, and egg whites are easy to digest.

I avoid commerical, blended protein powder as there is likely something in it that doesn't agree with me. I am also a "fruit and granola" person that likes to eat (and now needs to) as "purely" as I can, although everything but water in my "recipe" is processed.

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researchmaven,
Thanx for sharing.
Could I whip the egg whites into fluffy, then fold in at the end? Glad you mentioned the coconut oil, cuz I have issues with several nuts, walnuts are the worst. Heck, I will even pass up a chewy brownie if walnuts were even in the cupboard.
I do use a meal replacement protein, called Arbonne, my daughter needed some good protein while in the Air Force, so she did all the research on it. She found a prebiotic and something else that she said would be good for my stupid stomach.
Chia powder vs chia seeds, your recommendation? I have severe CIC, I tried the soaked seeds, then got scared of them burrowing into my intestines and never leaving.
Where do you buy the LiveKuna?
Thanx, so much for sharing. Thanx, for getting my 🤢‼️ ShelleyW
ShelleyW

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