1. < Digestive Health

Tortuosity Colin

Posted by margaretsmith328 @margaretsmith328, Sep 13 12:44pm

After many drs visits and lots of tests, I was diagnosed with a tortuous colon. It has affected my quality of life. I’m 65, my husband is getting ready to retire. We want to go places & do things but I’m afraid to plan. Has anyone had surgery? Was it successful? Is there a surgeon somewhere that specializes in this type of surgery?
Thanks! Margaret

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celia16 | @celia16 | Sep 13 4:41pm

I don’t have any information about this condition, but hope you find what you are looking for. Hopefully, there’ll be an option for treatment that will allow you to resume your plans. How are you feeling?

REPLY
2 replies
shelleyW | @shelleyw | Sep 13 7:59pm

margaretsmith328,
Mine is on and off, in small intestines. And I have had 17 years of CIC, under the care of the same GI, the whole time. ( his name is dr. Arrogant-Ignore.)I just found out, 1 year ago, by accident that I have a redundant splenic flexure In large intestine- an extra length of colon, making the 💩have to travel through more turns and more miles of colon before it can get out. I am 65 also, I have decided that I do not like getting older because everything is worse and wearing out.
Since you are 65 and have suffered a very very long time, why did it take so long to diagnose? What have your symptoms been? What type of doctor diagnosed you? How did you get the diagnosis? Do you have other related symptoms? I am so sad, no pissed off, that you have had to suffer for so long. ShelleyW

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1 reply
shelleyW | @shelleyw | Sep 13 8:01pm
In reply to @celia16 "I don’t have any information about this condition, but hope you find what you are looking..." + (show)
@celia16

I don’t have any information about this condition, but hope you find what you are looking for. Hopefully, there’ll be an option for treatment that will allow you to resume your plans. How are you feeling?

Jump to this post

Celia16,
This reply is so thoughtful, you asked the most important question, how are you feeling. You are a very kind person. ShelleyW

REPLY
margaretsmith328 | @margaretsmith328 | Sep 13 9:01pm
In reply to @celia16 "I don’t have any information about this condition, but hope you find what you are looking..." + (show)
@celia16

I don’t have any information about this condition, but hope you find what you are looking for. Hopefully, there’ll be an option for treatment that will allow you to resume your plans. How are you feeling?

Jump to this post

Hi Celia,
I’m actually doing ok today. But Tuesday & Wednesday were rough. It’s a cycle. I get severely constipated, pressure builds up, then I’m running to the bathroom, & stool leakage. I’m exhausted with all of this! Thanks for asking.

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margaretsmith328 | @margaretsmith328 | Sep 13 9:09pm
In reply to @shelleyw "margaretsmith328, Mine is on and off, in small intestines. And I have had 17 years of..." + (show)
@shelleyw

margaretsmith328,
Mine is on and off, in small intestines. And I have had 17 years of CIC, under the care of the same GI, the whole time. ( his name is dr. Arrogant-Ignore.)I just found out, 1 year ago, by accident that I have a redundant splenic flexure In large intestine- an extra length of colon, making the 💩have to travel through more turns and more miles of colon before it can get out. I am 65 also, I have decided that I do not like getting older because everything is worse and wearing out.
Since you are 65 and have suffered a very very long time, why did it take so long to diagnose? What have your symptoms been? What type of doctor diagnosed you? How did you get the diagnosis? Do you have other related symptoms? I am so sad, no pissed off, that you have had to suffer for so long. ShelleyW

Jump to this post

Hi Shelley.
I started having issues in April 2023. I was constantly leaking stool, but then I’d go to the bathroom & I thought maybe I had a stomach bug. Nope! Went to my PCP,xray showed severe constipation. I’ve had 2 colonoscopies, sitz marker test, defecatory mri, & manometry test & a Ct scan. Constipation! A colorectal surgeon did the last colonoscopy & told me I had tortuos colon. It doesn’t matter what I eat or don’t eat. I even met with a dietician but he said your problem is anatomical, not your diet. 🤷‍♀️

REPLY
1 reply
shelleyW | @shelleyw | Sep 14 3:44pm
In reply to @margaretsmith328 "Hi Shelley. I started having issues in April 2023. I was constantly leaking stool, but then..." + (show)
@margaretsmith328

Hi Shelley.
I started having issues in April 2023. I was constantly leaking stool, but then I’d go to the bathroom & I thought maybe I had a stomach bug. Nope! Went to my PCP,xray showed severe constipation. I’ve had 2 colonoscopies, sitz marker test, defecatory mri, & manometry test & a Ct scan. Constipation! A colorectal surgeon did the last colonoscopy & told me I had tortuos colon. It doesn’t matter what I eat or don’t eat. I even met with a dietician but he said your problem is anatomical, not your diet. 🤷‍♀️

Jump to this post

margaretsmith328,
Is surgery your only option, per the doctor? Did the colorectal doctor advise surgery? If so, what kind and how much colon would be removed?
I have had abdominal X-rays every few months for 8+ years, every single one showed moderate to heavy fecal load, except the one following 3 days of almost no solid food, just meal replacement shakes that my daughter has done all the research on, so I trust the quality. But I still have to use miralax and some Metamucil gummies to get any 💩 out.
Thanx ShelleyW

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