Twisted colon doctors no longer helping

Posted by lilkay @lilkay, Nov 27, 2022

Hello, I am having bad problems with constipation I was diagnosed with a tortuous colon and idiopathic chronic constipation. I am desperate for answers I have no urge to go I am taking motegrity n that stopped helping my doctors tell me nothing is wrong with me and they no longer can help me. I go a week sometimes without going finding myself using laxatives n they aren’t helping. I don’t know what to do anymore I have had tons of tests I think my brain n gut no longer communicate or a neurological issue.

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Sorry to hear of your problem, lilkay. I was told that by my first surgeon of 10 yrs😩 I did seek out other medical people, the head lecturer of the physio school diagnosed an obstruction and still that surgeon disagreed. I later learnt I was within my rights to seek a 2nd opinion.

Have you had a Bowel Transit Study done? It's an inexpensive, easy test which I feel she be done right at the beginning of ones troubles.
I didn't know of it, but was finally referred for one after 12 yrs of being on Colorectal surgeons books. It showed very clearly where a large obstruction was.
Surgeon gave me a diagnoses of Slow Transit and wanted to take all of my colon out! I almost went thru with it but gut feeling said NO and I asked for more investigation before having such a major op as that & possibly ending up the same or more problems. He didn't make much effort regarding more investigations.
I had been requesting a Colonoscopy via our public health system all this time but neither surgeons I saw would refer me 😫 stating I didn't fit the criteria - huh! I had every symptom of bowel cancer except from loosing weight.
With some financial help from my adult children I had a Colonoscopy done in the private sector. I too have a tortured colon & I watched on screen, the obstruction at my splenic flexure being blasted apart with compressed air. It was an unexpected feeling inside me and an astonishing sight which I will never forget but the Dr who performed the procedure denies it happened👎
He is covering the asses of the two surgeons who had failed to diagnose it.
Within a few days I started defecting almost as normally as I did 30 yrs ago.
I've had a lot of atrophy occur during this time - also 'not' noted in the report - but severe diverticulosis in my sigmoid is. I paid NZ$2,700 for the procedure and the Dr now refuses to provide me with a copy of said Colonoscopy.
I feel I can trust almost no one in the health sector now, so have sought the help of a Patient Advocate.
My hubby was killed 6 yrs ago and he was such a great support when it came to my ill health. I also have severe sero positive Rheumatoid & many other illnesses associated with it. It's very difficult having no one to support you.

But I digress. Request a Bowel Transit Study if you've not already had one.
Best of luck. 💞💞

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Pelvic floor therapy with biofeedback

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Check out thread, “Anyone else with a Redundant Colon”

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@annewithane

Sorry to hear of your problem, lilkay. I was told that by my first surgeon of 10 yrs😩 I did seek out other medical people, the head lecturer of the physio school diagnosed an obstruction and still that surgeon disagreed. I later learnt I was within my rights to seek a 2nd opinion.

Have you had a Bowel Transit Study done? It's an inexpensive, easy test which I feel she be done right at the beginning of ones troubles.
I didn't know of it, but was finally referred for one after 12 yrs of being on Colorectal surgeons books. It showed very clearly where a large obstruction was.
Surgeon gave me a diagnoses of Slow Transit and wanted to take all of my colon out! I almost went thru with it but gut feeling said NO and I asked for more investigation before having such a major op as that & possibly ending up the same or more problems. He didn't make much effort regarding more investigations.
I had been requesting a Colonoscopy via our public health system all this time but neither surgeons I saw would refer me 😫 stating I didn't fit the criteria - huh! I had every symptom of bowel cancer except from loosing weight.
With some financial help from my adult children I had a Colonoscopy done in the private sector. I too have a tortured colon & I watched on screen, the obstruction at my splenic flexure being blasted apart with compressed air. It was an unexpected feeling inside me and an astonishing sight which I will never forget but the Dr who performed the procedure denies it happened👎
He is covering the asses of the two surgeons who had failed to diagnose it.
Within a few days I started defecting almost as normally as I did 30 yrs ago.
I've had a lot of atrophy occur during this time - also 'not' noted in the report - but severe diverticulosis in my sigmoid is. I paid NZ$2,700 for the procedure and the Dr now refuses to provide me with a copy of said Colonoscopy.
I feel I can trust almost no one in the health sector now, so have sought the help of a Patient Advocate.
My hubby was killed 6 yrs ago and he was such a great support when it came to my ill health. I also have severe sero positive Rheumatoid & many other illnesses associated with it. It's very difficult having no one to support you.

But I digress. Request a Bowel Transit Study if you've not already had one.
Best of luck. 💞💞

Jump to this post

The only test they did that showed something was wrong was my swallowing a pill with markers in it had x ray done 3 n 5 days from taking pill all the doctors tools me is I have as slow digestive system so I think that many slow transit constipation

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Try acupuncture. Not generally covered by insurance and also difficult to find a good knowledgeable acupuncturist. But can work wonders. Has for me.

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Have you consulted with a nutritionist, dietician or a naturopathic doctor? After all as the saying goes, we are what we eat. If traditional western medicine isn’t helping you think outside the box. Good luck

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I take Linzess, Miralax, and stool softeners for constipation due to redundant colon. It's been a problem all my life. Still trying to find that "balance" between constipation and medication-induced diarrhea. I am on a high fiber diet and the low FODMAP diet for the past week. My newest symptom is GREEN stool. I called my GI dr who does not seem that concerned because I do not have severe pain. It's been going on for several days and is kind of freaking me out. Has anyone experienced this?

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I was told I have a very redundant colon back in 2016 nothing helps when you take laxatives you know you're in for a night of labor giving birth to a poop at least 12 hrs. I've tried Amitiza,Movantik,Relistor inj. did nothing now I was just been given samples of Isbrela would rather tried Linzess. Has anyone else tried Isbrela? Relistor is a joke it says not to leave ur bathroom within 10 minutes u will go did nothing but gave me cramps I told them and they sent me 4 boxes looked up price on GoodRX 3,800 a month someone at the insurance company getting kick back because that's not what my Dr. ordered my insurance denied that and sent me the Relistor thru specialty pharmacy in mail.

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Thank you to everyone involved in this thread! I am desperately trying to have my torturous colon either removed or resectioned so it fits properly in my body.

I’ve tried everything mentioned above (only in the 2nd week of biofeedback therapy now), aside from certain medications. Currently I take the highest doses of Linzess and Motegrity, drink Miralax (even though I don’t think it’s productive in the least), have tried higher fiber (30g/day), low fiber, FODMAP, etc. And suppositories almost daily. I am super active, running about 25 miles a week plus a mix of spinning, weights & yoga, and have cut out gluten and sugar. It’s at the point now, for the past month, that I’m having periodic back spasms, my entire left hip feels misaligned and my tailbone is protruding at a different angle. My insides are so squished, I can’t take a deep breath and I have to often, out of nowhere. I lost control of my bladder in a parking lot the other day. It was horrible.

I had an analrectal manometry that showed abnormally high pressure in my rectum, which is why I’m doing the biofeedback therapy. I saw a surgeon yesterday who told me essentially that, because I passed the Sitz Marker study, don’t have cancer, Crohn’s or diverticulitis, I don’t qualify for surgery yet. The Sitz Marker study is bogus. I have bowel movements, several a day, but they are insignificant and most of the waste is left behind. One week is supposed to determine how my system is functioning overall? I’ll have diarrhea around the blocked area(s) and that’s what shows up on the test. What happens when I’m not going to all these measures to have BMs? If it’s this bad now, when I’m 39 and in otherwise excellent health, with lower stress levels and more life skills than 10, 20, 30 years ago…,I can’t imagine what could transpire down the road.

After the surgeon left, the nurse said that my CT scan we “some of the worst they’d ever seen” but there’s not much to be done at this point. I was in tears almost the entire time. My lower back has searing pain. My quality of life is greatly affected, including relationships, mental health, and career.

I don’t want another band-aid. @mayoclinic please help me with a long term solution!

And experience, strength and/or hope is welcome! I’ll try anti haven’t already. Again, I am read for surgery and to put this chapter behind me.

Best of luck to you all! Cheers❤️Erin

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I have a severe redundant colon and IBS-C. The RC likely contributed to constipation as did the IBS-C. For now, my gut problems are in remission. This is how I got there:

I eat "about 15 things" that consist of easy-to-digest protein (fin fish, pea protein powder isolate, Lactaid non-fat milk and egg whites), zero FODMAP foods (simply "low FODMAP" didn't help me). Vegetable oil and nuts (not much). I am pretty creative with this limited diet but none of my foods are restaurant fare.

A lot of my meals are what one could call "pre-digested." Cooked hot cereal, soups, stir-fries. Lots of warm drinks, sipping water all day. Nothing raw.

I also added Bragg's apple-cider vinegar (1/2-1 tea) to every meal. That was a life-changer. My surmise is that, besides the dietary changes (which still need), I needed the vinegar as I didn't have enough stomach acid.

I also discovered mineral oil as a lubricant laxative. Another game changer as it is so gentle. Miralax didn't work. Regular laxatives worked but drained me for several days. I never tried prescriptions as I was skeptical they were worth it.

I learned that soluable fiber supplements are not a good solution as they slow transit (that is why it helps with weight loss; one feels "full.") Insoluable fiber isn't gentle and can plug one up. See this study (it is for people with more normal guts but still useful to read): https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3435786/

And I worked at de-stressing my life. I am by nature a stress-magnate. Stress and tension are bad for digestion. I don't think one's digestion is really working when that "fight or flight" adrenaline is on much of the time, as mine was/is (I have to keep working at that piece).

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