FAP and Duodenum Polyps - Seeking Advice

I had my colon, rectum, and anus removed due to a diagnosis of FAP, but now they are saying that I have hundreds of polyps in my duodenum.

Is there anyone else on here who has FAP and any problems with their duodenum? I'm trying to figure out my options, but the surgeon I spoke to seemed clueless when I mentioned the PSD surgery over a Whipple. It was rather frightening to see that I might know more than a surgeon. But thankfully, I am not opposed to traveling elsewhere to get an informed 2nd or even 3rd opinion. (laughs)

Hi ZaliBee ~ Here's a link to some rather technical info about FAP and duodenal polyps. Please keep me posted concerning the decisions you make. My youngest daughter has FAP, and your experiences may help her with the decisions that lie ahead.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1773219/

Thanks for the link Three.

I'm sorry to hear that your child has FAP, but once you get your ostomy, things get so much better. Before I had mine, it was a nightmare. I couldn't eat, I was tied to the bathroom, stomach pains, prozac, weakness, and of course, the doctors kept misdiagnosing me. 9 years.... now that it's over, I shake my head when I realize that I went through 9 years of hell thinking that I either had IBS or it was just nerves.

When the doctor finally realized what was wrong and started giving me options, I chose to go for the complete removal. I'm glad I did. There are 3 other FAP patients in the Florida VA medical system, and I've heard that each one has loads of complications from the procedures they chose. They have J-pouches, and from what I hear, I'm the better off of we 3. I told my doctor to remove everything he needed to so that I didn't have to go through the possibility of needing anus or rectum removed later...

Now, I am a shameless foodie and loving it.... but alas.... no popcorn allowed! Woe is me.

My daughter was misdiagnosed from the age of 14 until 16 — her doctor kept saying she had hemorrhoids due to constipation and should take laxatives. Finally, I took her to another doctor who said he'd never heard of a 16-year-old with hemorrhoids. When he looked inside, he found thousands of polyps.    What the other doctor was calling hemorrhoids was actually a severe prolapsing of the rectum whenever she went to the bathroom. Her colon and rectum were removed, and she was given a J-pouch, but it catastrophically failed within a week — as a result, she lost 80 cm of necrotic small intestine and ended up with an ileostomy.

Jeez, that's horrible.
That's the sucky part about having something rare. My FAP is attenuated, so I had problems when I was younger, but I didn't start developing polyps until my mid-30s. I actually had a colonoscopy when I was about 35, but they only saw a few and told me there was no real need to worry about them again, so any diagnoses after that were IBS, nerves, and other silly things.

By the time I was scoped again at 47, there were, of course, thousands. My doctor laid out all of the different options for my surgery, but wouldn't even discuss a J-pouch with me when I latched onto that. He said that he had seen more problems than it justified, and if I wanted one, he would refer me to a different surgeon. I was pissed and considered finding another doctor to get a J-pouch simply because I didn't want to have a bag on my side, but after reading up on the issues surrounding it, I had to agree with him.

I hear about all of the zillions of problems other ostomates are having, and I can't help but wonder what I am doing right. Maybe it's just dumb luck so far. I've only had about 3 blowouts, and that was in the very beginning. Hmm, I have been getting an itch under my flange lately, but stoma powder puts an end to that, so I've stocked up. The itch is annoying as hell though.

I have AFAP as well and had a Whipple and total ileostomy at the same time - the first ever done I guess -- being written up -- I was shocked as I have always had to have polyps removed to prevent cancer -- 5 generations -- but not until January when a carpet of polyps was suddenly discovered -- I was healthy as a horse and almost 68! I had the genetic tests done and tested positive -- so that brought on all the other tests -- I had a miracle doctor at Dartmouth Hitchcock in Hanover NH -- he did all of the surgery and it was 11 hours -- I also agreed to some new materials to prevent adhesions -- and some incredibly different positioning of the organs so you do not have other issues (heartburn) etc after the fact.

I would be glad to support you all the way through -- I can tell you it is not an easy go but I am just 4 months out post-op and doing wonderfully well. I lost 1/2 stomach, more than 1/2 of pancreas, gallbladder, all large intestine, and a foot of the upper small intestine -- and huge amounts of tumor.

The stoma is a bit to the right of the belly button and it is a bit frustrating to get the seal just right -- but I am finding ways and right bags. If I had any knowledge, I would have had it pushed over another inch but hindsight is always 100%!!

FAP is a nasty gene and has now eaten the lower jaw - having surgery again on that soon - I was loaded with tumors that had to be removed from all over the torso - they were silent and I had not had any problems, however, they were right on the verge of creating some disastrous problems. I assume you know it attacks all of the digestive system and the thyroid -- you need scans regularly.

You probably know that the more surgeries you have, the bigger the chances of desmoid tumors growing and adhesions -- that is one reason I went for a one-shot only deal and am totally glad I did.

I would definitely contact surgeons and places for some opinions - I certainly did -- did you have all the camera and internal ultrasound tests of all the organs so they can pinpoint and determine if cancerous or not and what organs are affected ---

If you are well on your way with cancer, I would not want to go through the Whipple and cause it to spread - that is a big issue - You also do not want to let things go such that you develop pancreatic cancer - a very big issue with FAP -----

I am very strong on QUALITY of life not quantity if there has to be a choice.

There is also a Dr. at DHMC that has gone into full FAP research and is excellent --- let me know how I can help --- Also, have you been told to have your siblings and children tested as this is a 50-50 chance to pass on and it is so important that they know so they can take preventative action.

Ewesful