Anyone else have a Redundant / Tortuous Colon?
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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How did it go? Do you have a primary report?
Yes. Everything went well. No polyps or issues. Just trying to get back to normal. Yesterday I felt like I had to go to the bathroom all day. Hope today is better .
I just returned from the Mayo in MN and I have a redundant and torturous colon. My sigmoid is telescoping into my rectum . I have dysergenic defecation and a rectocele. My visit for 2 1/2 weeks was very stressful and disappointing. It is very expensive to go to the Mayo to have accommodations and to eat.
The GI had no comment really about the colon situation. He just recommended doing 3 enemas a week, which I don't think is the healthiest idea either. I left with Linzess and Trulance and I had already taken Linzess a year and it was making my bp high I figured out. I went through a lot of testing at the Mayo and they did more cardiac than GI tests. I have been suffering since HPylori and I spent two years going to GI specialists before I had adhesions removed that were creating a blockage and appendicitis. I am still not sleeping and having problems with defecation. I went to the Mayo hoping to get some help with Biofeedback and they didn't help me. I thought I would mention before you book your flight. The GI seemed hesitant about Motegrity due to side effects. Good luck!! I hope you get better. I am 52 so I agree about not wanting to suffer a long time.
I'm sorry you didnt't get the help you were hoping for.
Many people with LARS (Low Anterior Resection Syndrom) do transanal irrigations daily (TAI) to have a good dump in the morning and be at peace the rest of the day.
Really sorry for the frustration you experienced on top of the $ to go through all that. I live about 90 minutes from Rochester where Mayo is of course so at least I have that in my favor. I have a prescription for Motegrity but have not started it yet, will wait until I get really bad again. I take Linzess as well, the 145 dosage instead of the 290 which is what I was originally given (couldn't be very far from a restroom on that dosage). The 145 amount seems to help along with lots of fluids, and some miralex. I have had some relief from a colonics session now and then which really purges me, but can only be done every few months I am told. I do have an appointment with a motility specialist at Mayo coming up in 6 weeks, hoping for some answers in regard of how to move forward and avoid as much distress as possible. Not expecting a magic bullet, but some help at least.
I don’t believe it’s more common as you get older ! How does a colon suddenly grow longer 😳
No , I think we are born with a longer colon….
It’s just any issue seems to be more difficult to deal with as we get older… my opinion. Get well soon 👌😘
Not true
I too have a redundant colon, and have managed it very well for years with a cap of Miralax every evening. The only problem is I just found out that I have stage 2 kidney disease. The Miralax bottle says don’t use it if you have kidney disease. I am so screwed!! Also, how do I know that the PEG didn’t actually CAUSE the damage to my kidneys? I haven’t stopped the Miralax yet. I need to whip up the courage to do so. It’s the only thing that ever worked!
I have a redundant Torturous: COLON. I find that I can’t let my stomach get empty. That’s when the nausea starts so I do have to graze throughout the day which is very difficult for me because I’ve never done that before. This is a tricky disorder. I can’t eat too much or I get bloated. If I don’t eat enough I get bloated if I eat the wrong thing or at the wrong time I get pain. Every morning I wake up with pain scan my body have a few Sips of coffee and usually I can have a decent BM but not always. I have found Lactulose solution which was prescribed by my G.I. has helped tremendously in emptying out however, stress and anxiety are my biggest obstacles
Some things that work for me that may work for you:
Avoid eating "heavy" foods at dinner (meat, fish, fat) and watch your intake of "dense" foods like heavy, dense bread.
Eat cooked veggies and fruit. I eat cooked parsnips and the few other things I can tolerate for their fiber content and low FODMAP status. (some say a long colon can trigger FODMAP issues). Also, ground chia seed is something to consider, as well as lactose-free milk products. I can handle raw kiwi (check out the study on how well it works for stubborn constipation) and papaya.
I have less nausea with the Intoleran brand dietary enzymes for food intolerances. A game changer.
Ten up and then ten down stomach massages expel bloat. Check the UK's National Health System (NHS) posting on constipation: https://www.torbayandsouthdevon.nhs.uk/uploads/25773.
Get your rest and sleep.
A huge problem for me was anxiety and sometimes sleep. I cope three ways now:
1) a micro-dose of melatonin (300 mcg pill cut in half) nightly. I am super sensitive to meds and supps. Others may need more, but start with less. Too much disturbs your circadian rhythm.
2) Hilma Gentle Bowel Support (2 a day) - I did not notice a stool improvement but it proved to be the missing link in ending my general 24/7 anxious state. A lot of research on magnesium and anxiety on the net.
3) Cognitive Behavioral Therapy for anxiety, which is just a deep state of relaxation. I learned in a 7 week course with a therapist, but there must be some relaxation recordings to listen to. After 7 weeks of daily listening, you have retrained your brain. You only need the tapes for a refresher or because you want to listen.
And make work-life balance a priority. A rested, destressed you will be more productive too. It took me awhile to realize I just wasn't that important ---my ego kept me on the race track.
BTW, good to know about Lactulose.
And when I feel I need to explain my health situation, I do so by analogy. It is as if I had diabetes and managed it solely with food. I have to watch what I eat.