Hello!
I just spent yet another whole day at the Emergency Room due to constipation. I have congenital tortuous and redundant colon (born that way!). I was told that “ tortuous and redundant” are sometimes used interchangeably and should not be. The reason is because one can have a very abnormally long colon (redundant) and also have a separate issue (tortuous), which means you have several loops and kinks in your bowel that makes digestion difficult.
This was what I was told recently. I’ve also been told that these words are used interchangeably bc they mean the same thing, an extra-long and twisted colon. I wish doctors would get it straight and all get on the same page with this bc I’ve been dealing with this since I’ve been a child, yet only diagnosed in the past couple years (I’m 60). I also suffered from endometriosis when I was of child-bearing years so it never occurred to me that these were separate issues- it took ten years and a dozen drs to finally get the endometriosis diagnosis! Now I’m trying to find a SPECIALIST in tortuous/ redundant colon (I’m not shouting with the all caps, simply emphasizing)
No gastrointestinal in my neck of the woods seems to know a thing about it. Some say “eat more fiber” but the type of fiber they tell me to eat, stops my colon in its tracks.
So, I thought I had a real bowel blockage and having a heart attack this week, it was horrific pain from between my shoulder blades to my left lower quadrant, almost felt like my ovary.
All my siblings (3), were born with the same condition. They are all much older than I am and have just lived with it. However, I would like to think the medical profession has come far enough since my siblings’ age (5-10+ yrs older), that they’ve done research on this condition!
When they discharged me from the hospital this week, they told me to eat a “low-residual diet”, but not make it a “lifestyle “, to see a “gastroenterologist”for further instructions!
Well, I was given an MRI to tell me what I already knew- I was “full of it” 🙂 and that I have a tortuous-redundant colon. Then given a soap-enema, which did nothing. Then sent home with an rx for that nasty huge jug of bowel-prep to drink… “clean yourself out and then make a follow -up with a gastroenterologist”.
Can’t wait to get the ER bill!
I did the bowel prep/flush until I was vomiting bile and running a temperature. I couldn’t finish it all but got 3/4 of it done.
I’m now bed-ridden from exhaustion and my insides are sore. Still have the pain that feels like it’s my ovary. I’ve been told before that that’s where the sigmoid is??? And that is usually the hardest area to get to flush out.
I’ve eaten white toast, ripe banana and some bland mashed potatoes today.
Still too much food, I already feel the bloat starting. But those were 3 things listed as “okay” on the Low-Residual Diet.
I’m feeling pretty discouraged and hope I’ll be able to find a specialist. I know there’s none in my area. So it would require travel.
I really empathize with all of you going through this bc I’ve dealt with it, like I said -my whole life, but just never knew what it was. I do know what I cannot eat and I keep a list of those things. Meat of any kind for one thing.
It sure makes it difficult when getting together with family around holidays.
I get tired of explaining the gruesome details of my colon and it falls on deaf ears anyway.
I guess I’m going to have to start bringing my own dishes to eat and stop worrying about offending others. At some point, we have to start taking care of ourselves even if others don’t get it.
They aren’t feeling the pain I’m in nor will they be paying my emergency room visit bill. 🙂
Praying all of you (and myself included) find solutions to this. I appreciate the wisdom you’ve shared.