> I'm Anita. When I was 13 I was found to have FAP also. By fluke, during a
stomach flu, my polyps were found. At 17 I had a total colectomy/Ileostomy done.
I am the first also, of a HUGE family to have this hereditary disease. Since
then I have had no medical emergencies to be concerned about. It's is sad that
your husbands wasn't found before it turned to cancer. All FAP does, if not
found and treated.

Hello Anita. You were young when you had your surgery, about the age our son
will be (something we haven't faced yet.. we thought my husband was young when
he had his surgery at 24). And, you are a spontaneous mutation like Russ, too
--small world. Russ was lucky even though he ended up with cancer.. of the 500
polyps he had, only 1 had turned cancerous & was within the walls of his colon,
so when they removed the colon, they removed all the cancerous cells with it.
He'd been bleeding rectally for 2 yrs & told no one, sought no medical care, so
he's extremely fortunate. He now goes to the doctor regularly --of course.

>The only way to really treat it is through a total colectomy. If the rectum is
left in, in hopes of reconnecting, and the stomach is not checked regularly, it
could be devestating.

They did leave a little bit of rectal stump to attach Russ' j-pouch to, but it
needs to come out now along w/ the pouch. Back then, Russ was not ready for an
ostomy, but he is now. He does go in annually for "irrigation day" (an upper
and lower GI same day)... more than annually lately, but when things are
'normal' it's just annually.

>I have learned much since my surgery in 1981. I have since had two beautiful
daughters, who have been having yearly colonoscopies since the age of 12, and
they do not mind.

We were going to wait to do the DNA test until Wyatt was 10 or 12, but he had GI
complaints off an on throughout kindergarten, so we had it done when he was 6 &
then his 1st scope then b/c of the off & on issues. He is now quite use to
scopes, too, but the first few were hard on him. He hates the prep, not the
scopes (and the IV's.. he has tricky veins). I hope your girls do well w/ the
prep & IV's.

>I found out about 2 mo. ago that my 17 1/2 y.o. is pregnant, so we decided to
see a genetic specialist at Ohio State University Hospital. Through thorough
inspection of my past surgical records, we have found out that I had both FAP
and Juvenile polyps.

I have a friend in Colorado who's husband and children have FAP (Attenuated FAP)
and they suspect her one son also has Juvenile Polyposis. It's interesting that
you have both, too -another small world thing. I hope everything turns out well
for your daughter and grandbaby.

>And after several tests so far to date, they have yet to find the mutated gene
in me so that they can test my daughters in hopes of not having to have yearly
colonoscopies. I would love it if my children could have their children tested
also.

We recently had extended DNA testing done on Russ & Wyatt (more than their
original diagnositic genetic testing). It didn't tell us a whole lot more, but
was interesting and it was necessary to have them both on an FAP registry at
UCSF (Wyatt was already on one there, but there was another that required this
specific genetic testing). The testing gave them codon #'s for specifically
where on the APC gene their type of FAP lies. The APC gene on chromosome 5 is
where all FAP is suppose to lie, just in different locations on the gene. Russ
& Wyatt are 'classic' or 'intermediate' FAP (earlier onset, larger # of polyps,
lower chance of problems with desmoid tumors) and lie on the middle-left of the
gene. The test they had recently was the comprehensive Colaris AP through
Myriad Genetic Labratories. I don't remember what their original diagnositic
genetic testing was, only that it was sent to Mayo in NY for analysis. I don't
know what the test is for JP.. I don't think it's on the same gene, though (or
maybe it is.. I don't know). It would be wonderful if your daughters didn't
have the gene.. I hope that is what comes from the testing.

> I don't know how much things have changed since my surgery 28 years ago. I
know my mother had a very hard time, as she also had 5 other younger children at
home. All of whom have been tested since, but only one who tests regularly.

28 yrs with a successful ileostomy is hugely impressive to me. I can't wait to
tell Russ when he gets home later. He was afraid his ostomy might only last as
long as his pouch did.. & didn't know what would happen then.
Russ is expecting to be back at work in 2-6 weeks if it's done laprascopically..
8-9 if it's another 'zipper' cut (they'd reopen just the lower half of his
existing scar/incision). He intends to telecommute as soon as he's able to (he
has a big fear of losing his job.. it's our only income & health coverage).
Does this sound reasonable? His doctors said it was 'doable'.

> There was a lot involved at home at that time. I was hospitalized for a little
over 3 weeks, and even then, my surgical site where the rectum was removed, had
to be flushed a couple of times daily with saline and betadine, to ensure
closure.

That is more extensive than Russ' j-pouch surgery was. He had complications and
was in almost 2 weeks b/c of that, then at home another 6&1/2 weeks. This time,
they are saying he'll be inpatient 5-7 days (barring complications, of course).
Over 3 weeks at 17 sounds mighty hard.. I'm sorry it was so rough and
complicated. Russ is a little nervous about his backside getting stitched
shut.. has heard it is itchy & uncomfortable until it fully heals (& that
sitting is uncomfortable until it heals). Does that sound about right?

>It was hard for my mom to see me go through all of that, and to have to take
care of me then. I love her very much for that. But it sure was tough to get use
to, for years.

I'm not even ready to think of my son's furture surgery yet. I have to
compartmentalize to get through each of our medical issues as they arise (even
when they come in clusters, which they most often do). I feel for your mom as
well as you.
When Russ had his first surgery, I moved into nurse mode easily and swiftly &
Russ was comfortable with that. I hope he is again. This time I have physical
limitations I didn't before, but I want to be able to help in whatever ways he
needs and wants me to.

>Depending on your husbands sleeping habits, there is the chance of rolling over
onto a full pouch during sleep and waking to a mess. You do eventually learn not
to do that.

He's a bad or side sleeper, but he's also a 'dead' sleeper, doens't wake for
anything (bombs could go off). He has had nighttime accidents with his pouch
(about once a week), but I assume a bag would be more of a mess. We'll just
work with what comes, I guess. He'll empty before bed and then we'll have to
see how his body works during the night. I know he won't like larger messes,
but if it's temporary until he figures out a body rhythym (& can wake to suit
that rhythm), hopefully that will be okay for him.

>And back then we didn't have the pouches that let the air out. There is a lot
of gas the first few monthes. And that is only because your body is adjusting to
the way your food digests now.

Russ has had a lot of problems with trapped (upper abdominal) gas even w/o a
bag, so we'll see how this goes. <sigh>, I wish I could wave a wand for him so
there will be zero problems.

> I also had a lot of skin issues. But in a few years time we learned all about
what to do for them also. It is a learning process. You just have to have faith
in yourself and be patient with yourself.

Should we take a year or half a year before travel.. to get use to all the
changes and adjustments & rhythyms? I am guessing these are all issues a person
would like to deal with close to home.

> ******If I can get the groups permission to post my personal website address
on here, there is so much more to tell to help. And I'm not even close to
finishing with the FAP/Ileostomy part on the site.

You could email me the website, too, if you had to. As long as the subject
heading gives me an indicator of who/what, I won't accidentally delete or spam.
--and THANK YOU!!

> I was lucky enough to have good insurance in 200 and fulfill my dream of
having a BCIR done so that I no longer had to wear a bag on my side. But I will
tell you, there are many days I wish I had that bag back. There are pro's and
con's to each. It all depends on the person. If I can help in any way, please
let me know.

We asked about a continent ostomy, but were told it wasn't a good option for
Russ, that it wouldn't hold up. Is the BCIR the same thing or different? Russ
would prefer an internal to external bag. Which hospital did you find that was
okay w/ doing it (if it's okay to ask)? I am glad you got yours and hope it is
all you wanted, even if there are also some cons to it. We have good insurance,
too, but we pay through the nose for it. It's a PPO, so we can go anywhere we
want, pretty much, we just pay a LOT every year (about 1/3 of our take-home
pay). I would love to hear about your BCIR. Thank you so much, Anita --and I
wish you the very best.
Meghan, Russ' wife