Candy Cane Roux Syndrome
So, I have had issues non stop with ulcers since surgery and basically what happened was I was still having pain after the ulcers were healed. So, the surgeon went in to see if this limb was collecting food or something of the like. Turns out I had a perforated ulcer AND needed to have the limb shortened. So, he did both....I felt great afterward. I still have recurring ulcers but have had not further pain from the "limb."
Hope this helps
Starting weight 348
Current weight 188
Super Momma to:
Aidan 2/14/02 and
First Post-op baby due 9/10!
I have been researching this to finding out I have a candy cane roux limb of 5 cm. I am two and a half years out. A year ago December, I got really sick and had to be hospitalized...they had no idea what was wrong and sent me home...it has happened a few more times since...and I've had one exploratory surgery (after not eating for a few days). So they found nothing.
I just had a scope done at Mass General in Boston and she found the candy cane limb.
There is only one article out there (one study) that I can find, and one person's story if you google it. I am looking for info as well. I am so sick of being sick all the time and vomiting after eating. I'm anemic all the time, constipated all the time...and my pain goes up to a level 10 at times but no one will treat me because they don't know "for sure" what is causing the pain and because i'm a former "fat" person with food addiction issues, they think automatically I'm an addict and can't have meds. I have wished that i would fall and BREAK something so that they would have to give me something for pain...how sad is that????????
I am hoping now that I have these reports that my original surgeon will help me. Other than that...I'm not sure what to do. I don't want a reversal...I just want to be well. I feel like I"m going to pass out all the time. And yes, I dump VERY badly after certain foods...so I know the difference. I actually appreciate my dumping syndrome because if I could eat ice cream, I'd be in big trouble :)
So if anyone has any information, please please please share. I'm in New Hampshire and it's only been an active weight loss hospital for five years.
It was found during an endoscopy...there are ulcers at the junction of the curve...i am going today to follow up with my gastric bypass surgeon and ask that he schedule surgery to remove it and if not then to find me someone who will. i cannot live like this any longer...
thank you for this post...it gave me motivation to go there with a more demanding tone.
I was not going to leave the hospital until it was resolved.
Once it was removed, all my pain was gone.
It is a simple surgery and took only about an hour. Yours might take a little longer because of the ulcers, but it still needs to be done. Don't let anyone cheat you out of your health and a pain free life.
It is so odd that many of us are having the same symptons. I am currently seeing an gastroenterologist and an oncologist for the pain I have been experiencing in the last 6 monts. I have reflux, pain in my chest and back, bloating, gas, enemic and some nausea. I had a cat scan of my stomach, and am scheduled for and edoscopy. I am also hungry all the time. Let's keep each other posted.
He had said that he was concerned about a possible internal hernia or bowel obstruction, and if nothing else, gallbladder inflammation would result in him removing it.
Instead...I wake up to find him explaining to my mother that he revised my surgery. Basically, I had the candy cane roux limb, which allowed me to eat a normal amount of food. The food then would stay in the roux limb and cause the upper abdominal pain and sometimes vomiting. In addition to that, my stoma was stretched out about 5 times the normal size and my pouch was bulging out in one directio. He fixed up the limb, and the stoma and pouch while he was at it.
In other words, after 4.5 years, I am back to day 1. It's exciting...but not what I was expecting at all. Hell, the night before my surgery I was doing my normal things, even making a casserole so I would have leftovers for when I was recovering. Now I'm on a liquid diet for a month and am pretty much guaranteed to lose all the weight I originally lost and gained back.
It was just supposed to be an exploratory surgery, so I'm hoping the insurance company will cover it, since it was pretty much medically necessary.
Anyway, that's my experience. I was shocked to say the least, and still am. I'm feeling great though, despite just having surgery yesterday. I've been through this before, and the memories make me nervous, but I'm excited to know that I am not fully to blame for my weight regain.
Highest Weight Before Surgery: 360
Weight at Original Surgery, 12-04: 330
Lowest Weight in 2006: 200ish
Current Weight: 305
on 7/27/09 5:00 pm
How are you feeling now?
How much have you lost?
Did your insurance cover it?
I am looking into this.
I just found out about Candy cane Roux today and THIS IS THE TROUBLE I AM HAVING!
I was hospitalized last year with high pancreatic levels and NO DOCTOR could figure out what my problem is, still cant and I vomit and get nauseated when I eat, currently have been put on glucophage because of my insulin levels skyrocketing, etc.
I am waiting to hear back from my surgeons nurse.
Rosemarie Jones in Indianapolis on Tuesday.
on 4/17/14 12:22 pm - United Kingdom
I had my bypass 9/8/13 and for 9 weeks after I was very ill. I would lose conciousness, feel very sick and couldn't eat anything. My surgeon was very efficient and with help from his own mentor figured out that I had candy cane syndrome. He immediately operated by stitching down my bowel as it had twisted and removing 5cm of the excess roux limb. After surgery I felt fine but several months on I am failing to eat without feeling extream tiredness, dizziness and pain. I'm not diabetic and am regularly tested for it. But I am confident that my surgeon will have this in hand very soon. It pays to see the brightness through all of this. Else you tend to make bigger problems for yourself. Myself and my surgeon will be also meeting with a specialist endocrinologist next week. I'm 8 months post surgery. I've dropped 10 stone. I'm in cloths I never dreamed is be in and have a smile on my face. I know it's hard and frustrating but it's still worth it. Hang on in there everyone cos your never on your own xxx
on 4/17/14 12:25 pm - United Kingdom
I should have imagined you'd have pain but I'm no doctor. You need to get medical advise hunny. You won't know till you do and be stubborn. Make them earn their pay cheque lol x
on 5/29/14 11:47 am
I wish you the best. My daughter has lived in agony for 23 months. Nobody can find a problem. She's had so many scopes and CAT scans, etc., she glows in a dark room. She's been told she's constipated, she's a drug addict, she's pregnant, and the old favorite, it's in her head. Nobody can find the problem. A new doctor has said Candy Cane, but we doubt she'll get the operation. During the last two years and dozens of doctors, nobody seems to want to stick with it and, most importantly, solve it. And forget having the pain treated. My daughter is starving. She gets so hungry, she eats, then has hours of "10" pain before it subsides. At one point she weighed 84 pounds. She can't pass a mirror anymore, because she "can't see" herself anymore, and the image is too much (or little) to take. Her weight soared to 97 lbs. when one brave doctor treated the pain. But at three months, she got scared so quit prescribing. My daughter hates taking pain medicine. She'd rather be cured any day of the week. But they can't seem to do that, and now that she can't eat any longer, she's just lingering. She was five years post-op when the problem started. Yours was caught much earlier, so maybe they'll get it under control quickly. My daughter wishes she never ever had the surgery. Her life has turned to H---. Sure she wears a 1 or 3, but she'd rather wear a 28 and not be in pain. You'd be surprised how quickly you lose a positive attitude when you've endured agony for two years. Just in case things don't go as quickly as you'd like, get a good support group. And keep that sunshine outlook!