Anyone else have a Redundant / Tortuous Colon?

As far as smoothies, it has become my everyday breakfast, seems to get things going. I use a ninja blender, with one scoop of Genuine Health organic vegan protein powder suggested to me my nutritionist, with 2 raw veggies and 2 fruits, usually spinach. piece of zucchini, blueberries, strawberries, or anything you want to experiment with, also a tablespoon of
MCT oil, with flax powder, a 1/4 teas. ginger powder, 1/2 teas. cinnamon, with 3/4 cup of almond milk, and and some pomegranate juice. You can have oatmeal.
I highly recommend going to a certified nutritionist, unless you are lucky enough to find a Dr who is interested in any other direction than prescription meds and laxatives. My nutritionist
suggested blended soups for lunch, stick with soft foods for dinner.
I was strict in the beginning, and when I go off, I have problems, also have IBS just to complicate things. Happy to discuss anything, questions, etc.with you. Betty

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As far as smoothies, it has become my everyday breakfast, seems to get things going. I use a ninja blender, with one scoop of Genuine Health organic vegan protein powder suggested to me my nutritionist, with 2 raw veggies and 2 fruits, usually spinach. piece of zucchini, blueberries, strawberries, or anything you want to experiment with, also a tablespoon of
MCT oil, with flax powder, a 1/4 teas. ginger powder, 1/2 teas. cinnamon, with 3/4 cup of almond milk, and and some pomegranate juice. You can have oatmeal.
I highly recommend going to a certified nutritionist, unless you are lucky enough to find a Dr who is interested in any other direction than prescription meds and laxatives. My nutritionist
suggested blended soups for lunch, stick with soft foods for dinner.
I was strict in the beginning, and when I go off, I have problems, also have IBS just to complicate things. Happy to discuss anything, questions, etc.with you. Betty

Jump to this post

As far as smoothies, it has become my everyday breakfast, seems to get things going. I use a ninja blender, with one scoop of Genuine Health organic vegan protein powder suggested to me my nutritionist, with 2 raw veggies and 2 fruits, usually spinach. piece of zucchini, blueberries, strawberries, or anything you want to experiment with, also a tablespoon of
MCT oil, with flax powder, a 1/4 teas. ginger powder, 1/2 teas. cinnamon, with 3/4 cup of almond milk, and and some pomegranate juice. You can have oatmeal.
I highly recommend going to a certified nutritionist, unless you are lucky enough to find a Dr who is interested in any other direction than prescription meds and laxatives. My nutritionist
suggested blended soups for lunch, stick with soft foods for dinner.
I was strict in the beginning, and when I go off, I have problems, also have IBS just to complicate things. Happy to discuss anything, questions, etc.with you. Betty

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I just found to have a very tortuous colon. After a failed colonoscopy and a failed barium enema after almost 3 bags of barium, no one has been able to see more than half of it. The only symptoms I've had are life long constipation, but more recently blood in the stool that's been getting better but going on for months. They are supposed to have me meet and talk with the Dr. but I haven't heard from them yet and they said that several days ago. I've been trying to get answers for this since January. I take miralax and magnesium chloride to help relieve the constipation.

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Well, I am so disappointed and frustrated. I waited months for the apt with the new gi motility specialist on Friday. I even sent a two-page synopsis ahead of my apt detailing my history, my recent struggles with managing my constipation meds and what I hoped to achieve with my apt. with her. It was an almost 4 hour drive. I was hopeful at first as she was nice, not arrogant as some, but not long before my frustration started. I also have had chronic, almost daily migraines, for nearly 30 years, and she quickly jumped on that. I am well aware of the brain-gut connection and my neurologist and I have spoken of it often. Also the role serotonin plays. But, in 30 years I have also tried and failed virtually every migraine drug and treatment there is. So, she says she doesn’t think my bowels will get better until my head does and visa-versa, all tied together. My nervous system is on overdrive. So what do I want from her, she asks? I want to know what to take and how to take it so I can poop regularly and what to do when everything stops and I just cannot go at all and how to recognize if X-ray or something is needed? Nothing. I asked same questions three different times, becoming more and more agitated as I wasn’t getting any answers. So, she does exam and tells me I have very rapid heart rate! Also, abdomen is really tender. Ya, because I’m hardly pooping! Gets beeped that her next patient has arrived so she has to wrap things up. So, I ask again. Finally says that she thinks previous dr has me on good meds, nothing new she can suggest from that end. As far as when I feel like I’m all backed-up, am I really or am I just perceiving it to be that way? How do you just perceive that you’re not pooping? She feels the real key is getting my migraines better. At this point I want to ask if she has a magic wand but I restrain
myself. So, the one thing she offers up is citalopram which she thinks could calm down my over-active nervous system. When I bring up severely tortuous colon. She says she saw that in records. She also referred me to a cognitive behavioral therapist who she thinks could be very helpful. First apt is in Sept! So, I left with pretty much nothing. Actually less, because I now have no one. My previous doctor has turned me over to her so I can’t call him as they’re all part of the same system. When things just stop moving, he will usually order an X-ray and then something strong to clean things out. She didn’t appear to even believe me about that. To even find someone else and get an apt will take months to get in and I have no idea who to even go to. I literally just cried myself to sleep last night.

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I certainly understand why you’re ready for answers and help! I’m going through something similar right now with my health. It can be frustrating to be patient dealing with our medical system. So much has changed since Covid. And I’ve had to wait months to get an appointment with a specialist. In February I found myself at the emergency dept one night after 11 days without a BM. It took 9 weeks to get into see my gastroenterologist then a week for the colonoscopy. I was diagnosed with Tortuous colon in May. I’ve had IBS for years also.

What is happening with your colonoscopy prep that you’re not clear for your colonoscopy? I know that’s really necessary for a look at your colon. Does your Dr have any idea why your bleeding? Are you waiting to get those questions answered?

I’m just now figuring out what to do for Tortuous colon. I’ve been reading about it online. This is a great place for information and support. I’ve been reading about food and natural ways to keep things moving! I’ve increased my water intake. I’m taking softeners every evening right now. My stomach is pretty bloated and some days I’m not as comfortable as others, that’s for sure!

Personally, I would call my drs office if I’ve waited several days for them to call me. If you need an appointment, kindly remind them you’d like to schedule it. I consider it advocating for myself! Unless there is a reason for the wait?

I’m glad you reached out! It really helped me to share my concerns about this diagnosis!

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I completely understand your frustration, mostly because we are in the same boat with the redundant colon. I also have a side order of Crohn's disease, which makes things interesting. I too have had experience with certain "expert" doctors who don't seem to have a clue, sometimes the one we've waited the longest to see. It's especially infuriating when they treat you like you don't know what your own body is telling you, isn't it ? Many of us have had that same experience, and It's easy to feel like we've somehow slipped through the cracks of the medical system. There are many days that I feel like I am treating myself with the help of Dr. Google and an occasional tele-med visit with my GI doctor, who is in another city. He's pretty good, but he doesn't have all the answers either. I wish I had some words of wisdom for you other than "hang in there" or "thoughts and prayers" and that kind of stuff. I will say that I have learned a lot from forums such as this one. Some of it worked for me and some of it didn't. But it's hard to separate the good from the not so good. So I keep plugging away. My current strategy is a combination of things I've learned from other people, along with an Rx from my GI doc. Mostly it works, but it seems like I'm always tweaking it. Don't give up. And don't give up on finding the right doctor for you. There are some out there.......

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Thank you Colleen for putting my message in the right place, I appreciate it! I have had success with the miralax and the magnesium chloride, but the magnesium chloride is literally the ONLY thing that's helped me have regular bowel movements every day like normal people. The magnesium chloride was actually just recommended by an acquaintance who had digestive issues too. The doctors seem to have no idea why there is blood in the stool still, but seems it's suspected that it's due to all of the bends in my colon. Odd thing though is it's never done that bleeding thing until around December 2021. It's a bit scary, but I am not sick in any other way. They also say that the colon is enlarged due to a lot of gas in there. I have always had a lot of gas and I usually feel bloated most of the time even though I've lost 88 lbs ( yes intentionally and slowly!)
Any advice or words of experience are helpful on this even if it's not exactly the same I'd appreciate hearing from people thank you!!!

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Just a few questions. Wondered with all “soft” foods, is there enough “bulk” to keep things moving? Also, I don’t see any carbs. Is there a reason for that?

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