Hello Meghan- I just want to tell you that I think you did the right thing
right off the bat by searching for support from others who are or have faced the
same.
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. 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. 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. 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. 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.
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.
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. 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. 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. 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.
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.

******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.

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.
***And if the group will permit me to post the web address for my site, I will
be happy to share any and everything.
Anita~ 31 year survivor of FAP/Juvenile polyps/Ileostomy and still going.







--- In stomacentralint@yahoogroups.com, "Sandra Achor" <eustrebor@...> wrote:
>
> Hi Meghan,
> I am Sandy, one of the co-owners of our group. Welcome to our group. Thank
you for giving us the history of your husband's problem.
> We are a very supportive group. I do not know if anyone in our group is
familiar with your type of health issue but it is fairly consistent with what
many of us have suffered with during of lifetime.
> I, too, live in Northern California (Tehama County).
> I have an ileostomy due to diverticular disease. I started out with a
colostomy but quickly ended up with the ileostomy (within 15 days).
> We have several men who can relate to your husband's unique situation. And,
we have at least one who has a J-pouch.
> I am sure that someone in our group can answer your questions. If not, we
have links to other related sites to help you become informed.
>
> For me personally, the ileostomy has been better than all the pain and
suffering of diverticulitis. Without this surgery, I would not be here. Colon
cancer runs in my family and I have a daughter with the same problem. My doctor
told her to take care of her issue before it becomes an emergency. Mine was an
emergency and I nearly didn't make it.
>
> To the group: Please respond if you can help.
>
> Sandy
>
>
> ----- Original Message -----
> From: Meghan<mailto:wymom94@...>
> To: stomacentralint@yahoogroups.com<mailto:stomacentralint@yahoogroups.com>
> Sent: Friday, July 17, 2009 10:38 AM
> Subject: [stomacentralint] new member, hubby soon to get ostomy
>
>
> Hello everyone, I'm Meghan. My husband, Russ, had colon cancer 13 yrs ago
w/ a one-step j-pouch. His cancer was due to Familial Adenomatous Polyposis
(he's the first to have it in his/our family, spontaneous mutation). His pouch
is shot now, a royal mess inside & the pre-cancerous polyps are coating the
little bit of rectum they left in him, so he's going in for an ostomy in place
of it within the next 3 months. We were hoping he could 'wait' until the
beginning of October because of other medical procedures we have coming up
before then (and a Make-a-Wish for our son that is due the end of September),
but the pre-cancerous aspect may have us schedule for next month if there is
concern about waiting (doctors are split on waiting 'til Oct). Russ was very
upset about switching to an ostomy, at first... he is now eager to be rid of the
problems and pain that his pouch have given him the last few years. We've done a
little research & have found that a lot of people who switch b/c of ongoing
problems feel genuine relief once they've adjusted, even gaining more than is
'lost'. Russ is really hoping this is the case for him. He's nervous, too,
though (of course). We live in Northern California and plan to have the surgery
at UCSF, about 2 hrs from our home. We'll decide in about 2 weeks (when we have
more info) whether to wait 'til the beginning of October or move everything
around so we can try for mid-August instead.
> little extra info --Our 14yr old son, Wyatt, has Familial Adenomatous
Polyposis like Russ, and he also has Inflammatory Bowel Disease (and other
medical conditions as well -quite a few). I have no bowel conditions, but have
bladder and spinal problems (and a few others). It's a lot of work to juggle the
medical care for the 3 of us, which is fairly constant (not a week goes by
without at least 2 medical appointments, if not 3, 4, 5, 6, or more) between the
3 of us. Wyatt and I are both mildly disabled and need assistive aids some of
the time, not all. We are a very interdependent family, relying on and
supporting one another to get things done -although Russ has typically been the
physically strong one. We are all a bit concerned as to how Wyatt & I can help
Russ in his surgical recovery --physically.. what he'll need, what we can
prepare for ahead of time, set in place, etc. Any helpful suggestions, advice,
shared experience, etc would be GREATLY appreciated for both the surgical
recovery and Russ' adjustment to living w/ an ostomy. I'd very much like to help
his physical and emotional adjustment to the ostomy in any way I can.
> Thank you for your time,
> Meghan, Russ' wife
>