Terri,

Truely, no special diet.   Son colon removal, j Pouch at 13 yrs old.
He eats what he wants.  He has stomach and deodeum polyps. He also
had an erosion. We do add fiber to help make things less watery.

He is 5'5" only 105 lbs.  He weighs less since colon removal so pedia
sure or ensure might help but there are times he won't eat it, 15
years old now, and moms don't know anything (just ask him).

Cathie


--- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@...>
wrote:
>
> We are in Clayton (just south of Raleigh)  Her doctor is in Chapel
> Hill (unc - Dr. Freeman)  We have been having alot of tests
lately.
> She has had her scoping and the doctor said she has more that 100
(of
> course I knew that because she had 150 last time) The Doctor told
us
> that she did not count them.  She also has polyps in her stomach
> now.  She has been in alot of pain and it turns out that her
stomach
> is all rare and bleeding.  (we have told that doctors that she has
> had stomach pain but the just pooh poohed it)  The doctor said it
is
> up to us when we want the surgery and that we could talk to the
> surgeon about it.  She did say that she would like to see more
weight
> on my daughter (she is 5ft and weighs 70lbs)  She was prescribed
> medication for her stomach and they hope that once that heals
alittle
> she will be able to put on some weight.  We are trying to adjust
her
> diet to be healthier.  The doctors are telling us that after the
> surgery there will need to be NO change to her diet but I find that
> really hard to believe.  I would think she would have digestion
> issues or such.  Some one has recommended Picnoginal (sp?) to us.
Do
> you know anything about it?
>
> Thank you so much.
>
> Terri
>
>
> --- In gardnerssyndrome@yahoogroups.com, "charles99_9"
> <charles99_9@> wrote:
> >
> > Terri,
> >
> > Like I'd said in a previous posting, I am from NC and would be
> willing
> > and able to help you find a good GI and Surgeon who are both
> familiar
> > with FAP (my GI and Surgeon!) for good opinions.
> >
> > As for my personal opinion on your daughters situation. Certainly
> 150
> > polyps is alot, however, her colon is NOT riddled with thousands
> upon
> > thousands of polyps like mine was. That being said, my opinion
would
> > be to keep constant surveilance on the colon via regular
> colonoscopy,
> > also doing Upper Endoscopy using a side viewing scope and make
sure
> to
> > biopsy the papilla, watching the ampulla of vater and being
> vigilant.
> > When more polyps present, then I might consider
surgery......that's
> my
> > personal opinion.
> >
> > I'd also get your daughter on the natural meds I'm taking in lieu
of
> > celebrex to try and retard and inhibit growth of polyps.
> >
> > Email me, I can help you in NC maybe.
> >
> > Charlie
> >
> > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> wrote:
> > >
> > > Hi, my name is Terri and my daughter has Gardners syndrome.
She
> is
> > > 12.  She has had one scoping a year ago (150 or so polyps
found)
> 5
> > > biops all negative.  She is going back on the 28th for her next
> > > scoping.  This time she will also have an endoscopy done.  It
> seems
> > > really hard to find information about this.  The doctor that
did
> the
> > > first scope made it seem like 150 was not a big deal.  But we
> have
> > > since moved and her new doctor seemed really shocked that she
had
> that
> > > many and is already talking surgery.  Can anyone give me their
> imput?
> > >
> > > Thanks!
> > > Terri
> > >
> >
>

Because of the NG tube (5 days no eating).  He wanted to eat and show
the Dr he was ready to come home.

We came home on Thurs--we took him out Sat to help sell for the Fire
Post and Sun Fire Post (only we wouldn't let him go on runs or carry
equipment)for testing. Incision is longer than the one for colon
removal.

Monday back a school.  If he is up to things we won't let him dwell.
Dad & I must talk but until ready we don't tell him right away.
Before all this he was crying and making comments about being a
ticking time bomb, so for now this may be our best course.

Our Ped GI is contacting the UofM Drs to help get him a team.  At
this point we told him that we need Drs that will grow with him into
adulthood and that he needs a special tool and that we will most
likely do another scope right after school lets out. But Dad & I are
concerned things have moved a lot faster than we had hoped.

Thanks for the interest.

Cathie

--- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@...>
wrote:
>
> I am sorry to hear of your sons troubles.  Our doctors have not
> removed any of her polyps.  Just did some biopsies.  It seems like
> they feel what is the point since more will grow and she will need
to
> have the surgery anyways.
>
> I hope you son is doing well.  How did he handle the surgery and
> recovery?
>
> Terri
>
>
>
> --- In gardnerssyndrome@yahoogroups.com, "Cathie" <tckeysermi@>
> wrote:
> >
> > Terri,
> >
> > It sounds like my son.  I know that our ped GI hoped to wait
until
> our
> > son was a little taller and maybe had less growing to do.  So we
> > removed many polyps when he was 12, when he was 13 approx 1 year
on
> his
> > second scope, we needed to remove his colon.  It is not what you
> want
> > to hear   details on www.mayoclinic.org  seemed simple enough for
> us to
> > understand, this group helped talk meds with the GI and the other
> risks
> > with them.  That was a rough year and I send lots of hugs,
tissues,
> and
> > a shoulder to rest on.  You probably feel like your drowning with
> no
> > shore in site to swim to, this will pass, your mothering will
step
> up
> > and help you do the best for your daughter and move forward.
> >
> > We talked about the scopes with his ped Dr. also, while she is
not
> a
> > familar it helped to have another Dr. talk to us.  (we cried alot-
-
> our
> > son wasn't allowed to see this, because I wanted him to have only
> > postive thoughts and attitude as we moved towards surgery)
> >
> > Also, when we found out about the colon we found out that his
> stomach
> > and deodeum was also carpeted with tiny polyps (not at the
> removable
> > stage) and told when they start getting bigger if to many come at
> once
> > we will not be able to stop remove them with the scope. (I'll
write
> > more later to this group because we just had other news and
issues)
> >
> > Anyway he is 15 with 5 more scopes behind him and until this last
> week
> > we have been doing great--and he felt he would live until he was
80
> > plus.
> >
> > Cathie
> >
> >
> >
> > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> wrote:
> > >
> > > Hi, my name is Terri and my daughter has Gardners syndrome.
She
> is
> > > 12.  She has had one scoping a year ago (150 or so polyps
found)
> 5
> > > biops all negative.  She is going back on the 28th for her next
> > > scoping.  This time she will also have an endoscopy done.  It
> seems
> > > really hard to find information about this.  The doctor that
did
> the
> > > first scope made it seem like 150 was not a big deal.  But we
> have
> > > since moved and her new doctor seemed really shocked that she
had
> > that
> > > many and is already talking surgery.  Can anyone give me their
> imput?
> > >
> > > Thanks!
> > > Terri
> > >
> >
>

Terri,

This group has links.  Try  www.mayoclinic.org.   Go to Alpha under F.
Your local hospital might look under colon cancer.



--- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@...> wrote:
>
> Can anyone recommend a webpage or something so I can learn all these
> medical terms?  Sometimes I feel like it is all a diffrent language.
>
> Thanks
> Terri
>

Terri,

I had my colon removed in September, and only have about 6 inches of rectum.  My
experience has been that there is no change to diet or lifestyle after about a 3
weel recovery period.  I have a few more bowel movements a day than I did before
(probably 3-4 a day), but that is it.  I also found it hard to believe when I
was told before the surgery that there would be no changes to lifestyle, but it
has been true for me.  The only real bad part for me was having an NG tube put
in after surgery....try to have them avoid that like the plague.

Wes

Wes
Sent from my Verizon Wireless BlackBerry

-----Original Message-----
From: "Terri" <chimp1984a@...>

Date: Fri, 29 Feb 2008 15:44:08
To:gardnerssyndrome@yahoogroups.com
Subject: [Gardners Syndrome] Re: Hello!


We are in Clayton (just south of Raleigh) Her doctor is in Chapel
  Hill (unc - Dr. Freeman) We have been having alot of tests lately.
  She has had her scoping and the doctor said she has more that 100 (of
  course I knew that because she had 150 last time) The Doctor told us
  that she did not count them. She also has polyps in her stomach
  now. She has been in alot of pain and it turns out that her stomach
  is all rare and bleeding. (we have told that doctors that she has
  had stomach pain but the just pooh poohed it) The doctor said it is
  up to us when we want the surgery and that we could talk to the
  surgeon about it. She did say that she would like to see more weight
  on my daughter (she is 5ft and weighs 70lbs) She was prescribed
  medication for her stomach and they hope that once that heals alittle
  she will be able to put on some weight. We are trying to adjust her
  diet to be healthier. The doctors are telling us that after the
  surgery there will need to be NO change to her diet but I find that
  really hard to believe. I would think she would have digestion
  issues or such. Some one has recommended Picnoginal (sp?) to us. Do
  you know anything about it?

  Thank you so much.

  Terri

  --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "charles99_9"
  <charles99_9@...> wrote:
  >
  > Terri,
  >
  > Like I'd said in a previous posting, I am from NC and would be
  willing
  > and able to help you find a good GI and Surgeon who are both
  familiar
  > with FAP (my GI and Surgeon!) for good opinions.
  >
  > As for my personal opinion on your daughters situation. Certainly
  150
  > polyps is alot, however, her colon is NOT riddled with thousands
  upon
  > thousands of polyps like mine was. That being said, my opinion would
  > be to keep constant surveilance on the colon via regular
  colonoscopy,
  > also doing Upper Endoscopy using a side viewing scope and make sure
  to
  > biopsy the papilla, watching the ampulla of vater and being
  vigilant.
  > When more polyps present, then I might consider surgery......that's
  my
  > personal opinion.
  >
  > I'd also get your daughter on the natural meds I'm taking in lieu of
  > celebrex to try and retard and inhibit growth of polyps.
  >
  > Email me, I can help you in NC maybe.
  >
  > Charlie
  >
  > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Terri" <chimp1984a@>
  wrote:
  > >
  > > Hi, my name is Terri and my daughter has Gardners syndrome. She
  is
  > > 12. She has had one scoping a year ago (150 or so polyps found)
  5
  > > biops all negative. She is going back on the 28th for her next
  > > scoping. This time she will also have an endoscopy done. It
  seems
  > > really hard to find information about this. The doctor that did
  the
  > > first scope made it seem like 150 was not a big deal. But we
  have
  > > since moved and her new doctor seemed really shocked that she had
  that
  > > many and is already talking surgery. Can anyone give me their
  imput?
  > >
  > > Thanks!
  > > Terri
  > >
  >

Oh yeck.  The dreaded NG tube.  If you gotta have one its best if its put in
while you are under.  I had one put in wide away.  Not fun.

Jon

   -----Original Message-----
   From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com]On Behalf Of wesparris@...
   Sent: Saturday, March 01, 2008 10:43 AM
   To: gardnerssyndrome@yahoogroups.com
   Subject: Re: [Gardners Syndrome] Re: Hello!


   Terri,

   I had my colon removed in September, and only have about 6 inches of
rectum. My experience has been that there is no change to diet or lifestyle
after about a 3 weel recovery period. I have a few more bowel movements a
day than I did before (probably 3-4 a day), but that is it. I also found it
hard to believe when I was told before the surgery that there would be no
changes to lifestyle, but it has been true for me. The only real bad part
for me was having an NG tube put in after surgery....try to have them avoid
that like the plague.

   Wes

   Wes
   Sent from my Verizon Wireless BlackBerry

   -----Original Message-----
   From: "Terri" <chimp1984a@...>

   Date: Fri, 29 Feb 2008 15:44:08
   To:gardnerssyndrome@yahoogroups.com
   Subject: [Gardners Syndrome] Re: Hello!


   We are in Clayton (just south of Raleigh) Her doctor is in Chapel
   Hill (unc - Dr. Freeman) We have been having alot of tests lately.
   She has had her scoping and the doctor said she has more that 100 (of
   course I knew that because she had 150 last time) The Doctor told us
   that she did not count them. She also has polyps in her stomach
   now. She has been in alot of pain and it turns out that her stomach
   is all rare and bleeding. (we have told that doctors that she has
   had stomach pain but the just pooh poohed it) The doctor said it is
   up to us when we want the surgery and that we could talk to the
   surgeon about it. She did say that she would like to see more weight
   on my daughter (she is 5ft and weighs 70lbs) She was prescribed
   medication for her stomach and they hope that once that heals alittle
   she will be able to put on some weight. We are trying to adjust her
   diet to be healthier. The doctors are telling us that after the
   surgery there will need to be NO change to her diet but I find that
   really hard to believe. I would think she would have digestion
   issues or such. Some one has recommended Picnoginal (sp?) to us. Do
   you know anything about it?

   Thank you so much.

   Terri

   --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "charles99_9"
   <charles99_9@...> wrote:
   >
   > Terri,
   >
   > Like I'd said in a previous posting, I am from NC and would be
   willing
   > and able to help you find a good GI and Surgeon who are both
   familiar
   > with FAP (my GI and Surgeon!) for good opinions.
   >
   > As for my personal opinion on your daughters situation. Certainly
   150
   > polyps is alot, however, her colon is NOT riddled with thousands
   upon
   > thousands of polyps like mine was. That being said, my opinion would
   > be to keep constant surveilance on the colon via regular
   colonoscopy,
   > also doing Upper Endoscopy using a side viewing scope and make sure
   to
   > biopsy the papilla, watching the ampulla of vater and being
   vigilant.
   > When more polyps present, then I might consider surgery......that's
   my
   > personal opinion.
   >
   > I'd also get your daughter on the natural meds I'm taking in lieu of
   > celebrex to try and retard and inhibit growth of polyps.
   >
   > Email me, I can help you in NC maybe.
   >
   > Charlie
   >
   > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Terri" <chimp1984a@>
   wrote:
   > >
   > > Hi, my name is Terri and my daughter has Gardners syndrome. She
   is
   > > 12. She has had one scoping a year ago (150 or so polyps found)
   5
   > > biops all negative. She is going back on the 28th for her next
   > > scoping. This time she will also have an endoscopy done. It
   seems
   > > really hard to find information about this. The doctor that did
   the
   > > first scope made it seem like 150 was not a big deal. But we
   have
   > > since moved and her new doctor seemed really shocked that she had
   that
   > > many and is already talking surgery. Can anyone give me their
   imput?
   > >
   > > Thanks!
   > > Terri
   > >
   >






[Non-text portions of this message have been removed]

Terri,

Hmmmm..........you could call my Colon-Rectal Surgeon in Charlotte,
also my GI in Charlotte and maybe he/they could recommend someone that
is closer to you. Otherwise, I'd say you could come and see them in
Charlotte. They are BOTH knowledgable and listen to us FAPers. Both
are kind and open.

Stomach polyps are quite common with us FAPers, i.e. Fundic Gland
Polyps. I have 50+/- in mine. We surveil them and keep an eye on them.
  Making sure we watch to make sure they don't change to adenomas.

With your daughter weighing only 70 lbs, I'd say a bit more weight
would be a good thing, but, there is the chance she may not be able to
put on more weight due to colonic polyps, etc.....

I can maybe call my GI/Surgeon and see if I can get a recommendation
for someone in your area..........sounds like maybe yours isn't "up"
on FAP and that's what is really needed. :-)

All the best.

Charlie

--- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@...> wrote:
>
> We are in Clayton (just south of Raleigh)  Her doctor is in Chapel
> Hill (unc - Dr. Freeman)  We have been having alot of tests lately.
> She has had her scoping and the doctor said she has more that 100 (of
> course I knew that because she had 150 last time) The Doctor told us
> that she did not count them.  She also has polyps in her stomach
> now.  She has been in alot of pain and it turns out that her stomach
> is all rare and bleeding.  (we have told that doctors that she has
> had stomach pain but the just pooh poohed it)  The doctor said it is
> up to us when we want the surgery and that we could talk to the
> surgeon about it.  She did say that she would like to see more weight
> on my daughter (she is 5ft and weighs 70lbs)  She was prescribed
> medication for her stomach and they hope that once that heals alittle
> she will be able to put on some weight.  We are trying to adjust her
> diet to be healthier.  The doctors are telling us that after the
> surgery there will need to be NO change to her diet but I find that
> really hard to believe.  I would think she would have digestion
> issues or such.  Some one has recommended Picnoginal (sp?) to us.  Do
> you know anything about it?
>
> Thank you so much.
>
> Terri
>
>
> --- In gardnerssyndrome@yahoogroups.com, "charles99_9"
> <charles99_9@> wrote:
> >
> > Terri,
> >
> > Like I'd said in a previous posting, I am from NC and would be
> willing
> > and able to help you find a good GI and Surgeon who are both
> familiar
> > with FAP (my GI and Surgeon!) for good opinions.
> >
> > As for my personal opinion on your daughters situation. Certainly
> 150
> > polyps is alot, however, her colon is NOT riddled with thousands
> upon
> > thousands of polyps like mine was. That being said, my opinion would
> > be to keep constant surveilance on the colon via regular
> colonoscopy,
> > also doing Upper Endoscopy using a side viewing scope and make sure
> to
> > biopsy the papilla, watching the ampulla of vater and being
> vigilant.
> > When more polyps present, then I might consider surgery......that's
> my
> > personal opinion.
> >
> > I'd also get your daughter on the natural meds I'm taking in lieu of
> > celebrex to try and retard and inhibit growth of polyps.
> >
> > Email me, I can help you in NC maybe.
> >
> > Charlie
> >
> > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> wrote:
> > >
> > > Hi, my name is Terri and my daughter has Gardners syndrome.  She
> is
> > > 12.  She has had one scoping a year ago (150 or so polyps found)
> 5
> > > biops all negative.  She is going back on the 28th for her next
> > > scoping.  This time she will also have an endoscopy done.  It
> seems
> > > really hard to find information about this.  The doctor that did
> the
> > > first scope made it seem like 150 was not a big deal.  But we
> have
> > > since moved and her new doctor seemed really shocked that she had
> that
> > > many and is already talking surgery.  Can anyone give me their
> imput?
> > >
> > > Thanks!
> > > Terri
> > >
> >
>

It seems that our doctor really doesn't know about Gardners.  She
seems to be getting her info from the pediatric surgeon.  She is
always going on.."the surgeon said this..." and "I will ask the
surgeon about that..".  We would love a recommendation if that would
not be too much trouble.

We are hoping that the prilosec will heal up her stomach and she will
at least gain alittle.  Even 5lbs would be good.

Thanks
Terri




--- In gardnerssyndrome@yahoogroups.com, "charles99_9"
<charles99_9@...> wrote:
>
> Terri,
>
> Hmmmm..........you could call my Colon-Rectal Surgeon in Charlotte,
> also my GI in Charlotte and maybe he/they could recommend someone
that
> is closer to you. Otherwise, I'd say you could come and see them in
> Charlotte. They are BOTH knowledgable and listen to us FAPers. Both
> are kind and open.
>
> Stomach polyps are quite common with us FAPers, i.e. Fundic Gland
> Polyps. I have 50+/- in mine. We surveil them and keep an eye on
them.
>  Making sure we watch to make sure they don't change to adenomas.
>
> With your daughter weighing only 70 lbs, I'd say a bit more weight
> would be a good thing, but, there is the chance she may not be able
to
> put on more weight due to colonic polyps, etc.....
>
> I can maybe call my GI/Surgeon and see if I can get a recommendation
> for someone in your area..........sounds like maybe yours isn't "up"
> on FAP and that's what is really needed. :-)
>
> All the best.
>
> Charlie
>
> --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
wrote:
> >
> > We are in Clayton (just south of Raleigh)  Her doctor is in
Chapel
> > Hill (unc - Dr. Freeman)  We have been having alot of tests
lately.
> > She has had her scoping and the doctor said she has more that 100
(of
> > course I knew that because she had 150 last time) The Doctor told
us
> > that she did not count them.  She also has polyps in her stomach
> > now.  She has been in alot of pain and it turns out that her
stomach
> > is all rare and bleeding.  (we have told that doctors that she
has
> > had stomach pain but the just pooh poohed it)  The doctor said it
is
> > up to us when we want the surgery and that we could talk to the
> > surgeon about it.  She did say that she would like to see more
weight
> > on my daughter (she is 5ft and weighs 70lbs)  She was prescribed
> > medication for her stomach and they hope that once that heals
alittle
> > she will be able to put on some weight.  We are trying to adjust
her
> > diet to be healthier.  The doctors are telling us that after the
> > surgery there will need to be NO change to her diet but I find
that
> > really hard to believe.  I would think she would have digestion
> > issues or such.  Some one has recommended Picnoginal (sp?) to
us.  Do
> > you know anything about it?
> >
> > Thank you so much.
> >
> > Terri
> >
> >
> > --- In gardnerssyndrome@yahoogroups.com, "charles99_9"
> > <charles99_9@> wrote:
> > >
> > > Terri,
> > >
> > > Like I'd said in a previous posting, I am from NC and would be
> > willing
> > > and able to help you find a good GI and Surgeon who are both
> > familiar
> > > with FAP (my GI and Surgeon!) for good opinions.
> > >
> > > As for my personal opinion on your daughters situation.
Certainly
> > 150
> > > polyps is alot, however, her colon is NOT riddled with
thousands
> > upon
> > > thousands of polyps like mine was. That being said, my opinion
would
> > > be to keep constant surveilance on the colon via regular
> > colonoscopy,
> > > also doing Upper Endoscopy using a side viewing scope and make
sure
> > to
> > > biopsy the papilla, watching the ampulla of vater and being
> > vigilant.
> > > When more polyps present, then I might consider
surgery......that's
> > my
> > > personal opinion.
> > >
> > > I'd also get your daughter on the natural meds I'm taking in
lieu of
> > > celebrex to try and retard and inhibit growth of polyps.
> > >
> > > Email me, I can help you in NC maybe.
> > >
> > > Charlie
> > >
> > > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> > wrote:
> > > >
> > > > Hi, my name is Terri and my daughter has Gardners syndrome.
She
> > is
> > > > 12.  She has had one scoping a year ago (150 or so polyps
found)
> > 5
> > > > biops all negative.  She is going back on the 28th for her
next
> > > > scoping.  This time she will also have an endoscopy done.  It
> > seems
> > > > really hard to find information about this.  The doctor that
did
> > the
> > > > first scope made it seem like 150 was not a big deal.  But we
> > have
> > > > since moved and her new doctor seemed really shocked that she
had
> > that
> > > > many and is already talking surgery.  Can anyone give me
their
> > imput?
> > > >
> > > > Thanks!
> > > > Terri
> > > >
> > >
> >
>

What is a NG tube?

Terri

--- In gardnerssyndrome@yahoogroups.com, "Cathie" <tckeysermi@...>
wrote:
>
> Because of the NG tube (5 days no eating).  He wanted to eat and
show
> the Dr he was ready to come home.
>
> We came home on Thurs--we took him out Sat to help sell for the
Fire
> Post and Sun Fire Post (only we wouldn't let him go on runs or
carry
> equipment)for testing. Incision is longer than the one for colon
> removal.
>
> Monday back a school.  If he is up to things we won't let him
dwell.
> Dad & I must talk but until ready we don't tell him right away.
> Before all this he was crying and making comments about being a
> ticking time bomb, so for now this may be our best course.
>
> Our Ped GI is contacting the UofM Drs to help get him a team.  At
> this point we told him that we need Drs that will grow with him
into
> adulthood and that he needs a special tool and that we will most
> likely do another scope right after school lets out. But Dad & I
are
> concerned things have moved a lot faster than we had hoped.
>
> Thanks for the interest.
>
> Cathie
>
> --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> wrote:
> >
> > I am sorry to hear of your sons troubles.  Our doctors have not
> > removed any of her polyps.  Just did some biopsies.  It seems
like
> > they feel what is the point since more will grow and she will
need
> to
> > have the surgery anyways.
> >
> > I hope you son is doing well.  How did he handle the surgery and
> > recovery?
> >
> > Terri
> >
> >
> >
> > --- In gardnerssyndrome@yahoogroups.com, "Cathie" <tckeysermi@>
> > wrote:
> > >
> > > Terri,
> > >
> > > It sounds like my son.  I know that our ped GI hoped to wait
> until
> > our
> > > son was a little taller and maybe had less growing to do.  So
we
> > > removed many polyps when he was 12, when he was 13 approx 1
year
> on
> > his
> > > second scope, we needed to remove his colon.  It is not what
you
> > want
> > > to hear   details on www.mayoclinic.org  seemed simple enough
for
> > us to
> > > understand, this group helped talk meds with the GI and the
other
> > risks
> > > with them.  That was a rough year and I send lots of hugs,
> tissues,
> > and
> > > a shoulder to rest on.  You probably feel like your drowning
with
> > no
> > > shore in site to swim to, this will pass, your mothering will
> step
> > up
> > > and help you do the best for your daughter and move forward.
> > >
> > > We talked about the scopes with his ped Dr. also, while she is
> not
> > a
> > > familar it helped to have another Dr. talk to us.  (we cried
alot-
> -
> > our
> > > son wasn't allowed to see this, because I wanted him to have
only
> > > postive thoughts and attitude as we moved towards surgery)
> > >
> > > Also, when we found out about the colon we found out that his
> > stomach
> > > and deodeum was also carpeted with tiny polyps (not at the
> > removable
> > > stage) and told when they start getting bigger if to many come
at
> > once
> > > we will not be able to stop remove them with the scope. (I'll
> write
> > > more later to this group because we just had other news and
> issues)
> > >
> > > Anyway he is 15 with 5 more scopes behind him and until this
last
> > week
> > > we have been doing great--and he felt he would live until he
was
> 80
> > > plus.
> > >
> > > Cathie
> > >
> > >
> > >
> > > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> > wrote:
> > > >
> > > > Hi, my name is Terri and my daughter has Gardners syndrome.
> She
> > is
> > > > 12.  She has had one scoping a year ago (150 or so polyps
> found)
> > 5
> > > > biops all negative.  She is going back on the 28th for her
next
> > > > scoping.  This time she will also have an endoscopy done.  It
> > seems
> > > > really hard to find information about this.  The doctor that
> did
> > the
> > > > first scope made it seem like 150 was not a big deal.  But we
> > have
> > > > since moved and her new doctor seemed really shocked that she
> had
> > > that
> > > > many and is already talking surgery.  Can anyone give me
their
> > imput?
> > > >
> > > > Thanks!
> > > > Terri
> > > >
> > >
> >
>

Certainly sounds like you've got someone on your hands who is
inexperienced. That's not too uncommon with FAP/GS, trust me!

Anywho...........

Surgeon is
Dr. Douglas Rosen, Charlotte Colon-Rectal Surgeons Phone  (704)
333-1259. (wwww.charlottecolorectal.com)  Ask for Maria, his assistant
and tell her that "Charlie Henricks referred you" and that you are
looking for some sort of referral for your daughter for a FAP/GS
knowledgeable Colo-Rectal Surgeon in your area. Unless your not
adverse to driving to Charlotte, though I don't think Dr. Rosen does
pediatric, but, he may have some good recommendations for you. Dr.
Rosen is SUPER.

Dr. Robert J. Schmitz at Charlotte GastroEnterology and Hepatology in
the Ballantyne Area of Charlotte. 704-377-4009
(www.charlottegastro.com). His assistant is Karen Auckerman, again,
tell her that "Charlie Henricks referred you" and your looking for a
knowledgeable FAP/GS GastroEnterologist for your daughter, etc. etc..
and I'm certain she can point you in the right direction. Sometimes,
it takes time for Karen to get back to you, she's quite busy. Just
hang in there.

Let me know if you don't get anywhere with either, I can and will
personally call either or both of them for you!

Both are SUPER Doctors and quite knowledgeable about FAP/GS and are
OPEN to listen and will TEACH and help YOU learn about your daughters
condition.

You might want to go and look on the Cleveland Clinic Foundations
website about FAP info, also on several others. Google is a beautiful
thing! Let me know if I can help you, will do what I can.

Best to you.

Charlie




--- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@...> wrote:
>
> It seems that our doctor really doesn't know about Gardners.  She
> seems to be getting her info from the pediatric surgeon.  She is
> always going on.."the surgeon said this..." and "I will ask the
> surgeon about that..".  We would love a recommendation if that would
> not be too much trouble.
>
> We are hoping that the prilosec will heal up her stomach and she will
> at least gain alittle.  Even 5lbs would be good.
>
> Thanks
> Terri
>
>
>
>
> --- In gardnerssyndrome@yahoogroups.com, "charles99_9"
> <charles99_9@> wrote:
> >
> > Terri,
> >
> > Hmmmm..........you could call my Colon-Rectal Surgeon in Charlotte,
> > also my GI in Charlotte and maybe he/they could recommend someone
> that
> > is closer to you. Otherwise, I'd say you could come and see them in
> > Charlotte. They are BOTH knowledgable and listen to us FAPers. Both
> > are kind and open.
> >
> > Stomach polyps are quite common with us FAPers, i.e. Fundic Gland
> > Polyps. I have 50+/- in mine. We surveil them and keep an eye on
> them.
> >  Making sure we watch to make sure they don't change to adenomas.
> >
> > With your daughter weighing only 70 lbs, I'd say a bit more weight
> > would be a good thing, but, there is the chance she may not be able
> to
> > put on more weight due to colonic polyps, etc.....
> >
> > I can maybe call my GI/Surgeon and see if I can get a recommendation
> > for someone in your area..........sounds like maybe yours isn't "up"
> > on FAP and that's what is really needed. :-)
> >
> > All the best.
> >
> > Charlie
> >
> > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> wrote:
> > >
> > > We are in Clayton (just south of Raleigh)  Her doctor is in
> Chapel
> > > Hill (unc - Dr. Freeman)  We have been having alot of tests
> lately.
> > > She has had her scoping and the doctor said she has more that 100
> (of
> > > course I knew that because she had 150 last time) The Doctor told
> us
> > > that she did not count them.  She also has polyps in her stomach
> > > now.  She has been in alot of pain and it turns out that her
> stomach
> > > is all rare and bleeding.  (we have told that doctors that she
> has
> > > had stomach pain but the just pooh poohed it)  The doctor said it
> is
> > > up to us when we want the surgery and that we could talk to the
> > > surgeon about it.  She did say that she would like to see more
> weight
> > > on my daughter (she is 5ft and weighs 70lbs)  She was prescribed
> > > medication for her stomach and they hope that once that heals
> alittle
> > > she will be able to put on some weight.  We are trying to adjust
> her
> > > diet to be healthier.  The doctors are telling us that after the
> > > surgery there will need to be NO change to her diet but I find
> that
> > > really hard to believe.  I would think she would have digestion
> > > issues or such.  Some one has recommended Picnoginal (sp?) to
> us.  Do
> > > you know anything about it?
> > >
> > > Thank you so much.
> > >
> > > Terri
> > >
> > >
> > > --- In gardnerssyndrome@yahoogroups.com, "charles99_9"
> > > <charles99_9@> wrote:
> > > >
> > > > Terri,
> > > >
> > > > Like I'd said in a previous posting, I am from NC and would be
> > > willing
> > > > and able to help you find a good GI and Surgeon who are both
> > > familiar
> > > > with FAP (my GI and Surgeon!) for good opinions.
> > > >
> > > > As for my personal opinion on your daughters situation.
> Certainly
> > > 150
> > > > polyps is alot, however, her colon is NOT riddled with
> thousands
> > > upon
> > > > thousands of polyps like mine was. That being said, my opinion
> would
> > > > be to keep constant surveilance on the colon via regular
> > > colonoscopy,
> > > > also doing Upper Endoscopy using a side viewing scope and make
> sure
> > > to
> > > > biopsy the papilla, watching the ampulla of vater and being
> > > vigilant.
> > > > When more polyps present, then I might consider
> surgery......that's
> > > my
> > > > personal opinion.
> > > >
> > > > I'd also get your daughter on the natural meds I'm taking in
> lieu of
> > > > celebrex to try and retard and inhibit growth of polyps.
> > > >
> > > > Email me, I can help you in NC maybe.
> > > >
> > > > Charlie
> > > >
> > > > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> > > wrote:
> > > > >
> > > > > Hi, my name is Terri and my daughter has Gardners syndrome.
> She
> > > is
> > > > > 12.  She has had one scoping a year ago (150 or so polyps
> found)
> > > 5
> > > > > biops all negative.  She is going back on the 28th for her
> next
> > > > > scoping.  This time she will also have an endoscopy done.  It
> > > seems
> > > > > really hard to find information about this.  The doctor that
> did
> > > the
> > > > > first scope made it seem like 150 was not a big deal.  But we
> > > have
> > > > > since moved and her new doctor seemed really shocked that she
> had
> > > that
> > > > > many and is already talking surgery.  Can anyone give me
> their
> > > imput?
> > > > >
> > > > > Thanks!
> > > > > Terri
> > > > >
> > > >
> > >
> >
>

NG tube is a long flexible tube that is basically stuck up your nose,
down your throat into your stomach to help remove bile, etc... that
your stomach is unable to move along due to "sleeping bowel" or other
issues. :-)

--- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@...> wrote:
>
> What is a NG tube?
>
> Terri
>
> --- In gardnerssyndrome@yahoogroups.com, "Cathie" <tckeysermi@>
> wrote:
> >
> > Because of the NG tube (5 days no eating).  He wanted to eat and
> show
> > the Dr he was ready to come home.
> >
> > We came home on Thurs--we took him out Sat to help sell for the
> Fire
> > Post and Sun Fire Post (only we wouldn't let him go on runs or
> carry
> > equipment)for testing. Incision is longer than the one for colon
> > removal.
> >
> > Monday back a school.  If he is up to things we won't let him
> dwell.
> > Dad & I must talk but until ready we don't tell him right away.
> > Before all this he was crying and making comments about being a
> > ticking time bomb, so for now this may be our best course.
> >
> > Our Ped GI is contacting the UofM Drs to help get him a team.  At
> > this point we told him that we need Drs that will grow with him
> into
> > adulthood and that he needs a special tool and that we will most
> > likely do another scope right after school lets out. But Dad & I
> are
> > concerned things have moved a lot faster than we had hoped.
> >
> > Thanks for the interest.
> >
> > Cathie
> >
> > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> > wrote:
> > >
> > > I am sorry to hear of your sons troubles.  Our doctors have not
> > > removed any of her polyps.  Just did some biopsies.  It seems
> like
> > > they feel what is the point since more will grow and she will
> need
> > to
> > > have the surgery anyways.
> > >
> > > I hope you son is doing well.  How did he handle the surgery and
> > > recovery?
> > >
> > > Terri
> > >
> > >
> > >
> > > --- In gardnerssyndrome@yahoogroups.com, "Cathie" <tckeysermi@>
> > > wrote:
> > > >
> > > > Terri,
> > > >
> > > > It sounds like my son.  I know that our ped GI hoped to wait
> > until
> > > our
> > > > son was a little taller and maybe had less growing to do.  So
> we
> > > > removed many polyps when he was 12, when he was 13 approx 1
> year
> > on
> > > his
> > > > second scope, we needed to remove his colon.  It is not what
> you
> > > want
> > > > to hear   details on www.mayoclinic.org  seemed simple enough
> for
> > > us to
> > > > understand, this group helped talk meds with the GI and the
> other
> > > risks
> > > > with them.  That was a rough year and I send lots of hugs,
> > tissues,
> > > and
> > > > a shoulder to rest on.  You probably feel like your drowning
> with
> > > no
> > > > shore in site to swim to, this will pass, your mothering will
> > step
> > > up
> > > > and help you do the best for your daughter and move forward.
> > > >
> > > > We talked about the scopes with his ped Dr. also, while she is
> > not
> > > a
> > > > familar it helped to have another Dr. talk to us.  (we cried
> alot-
> > -
> > > our
> > > > son wasn't allowed to see this, because I wanted him to have
> only
> > > > postive thoughts and attitude as we moved towards surgery)
> > > >
> > > > Also, when we found out about the colon we found out that his
> > > stomach
> > > > and deodeum was also carpeted with tiny polyps (not at the
> > > removable
> > > > stage) and told when they start getting bigger if to many come
> at
> > > once
> > > > we will not be able to stop remove them with the scope. (I'll
> > write
> > > > more later to this group because we just had other news and
> > issues)
> > > >
> > > > Anyway he is 15 with 5 more scopes behind him and until this
> last
> > > week
> > > > we have been doing great--and he felt he would live until he
> was
> > 80
> > > > plus.
> > > >
> > > > Cathie
> > > >
> > > >
> > > >
> > > > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> > > wrote:
> > > > >
> > > > > Hi, my name is Terri and my daughter has Gardners syndrome.
> > She
> > > is
> > > > > 12.  She has had one scoping a year ago (150 or so polyps
> > found)
> > > 5
> > > > > biops all negative.  She is going back on the 28th for her
> next
> > > > > scoping.  This time she will also have an endoscopy done.  It
> > > seems
> > > > > really hard to find information about this.  The doctor that
> > did
> > > the
> > > > > first scope made it seem like 150 was not a big deal.  But we
> > > have
> > > > > since moved and her new doctor seemed really shocked that she
> > had
> > > > that
> > > > > many and is already talking surgery.  Can anyone give me
> their
> > > imput?
> > > > >
> > > > > Thanks!
> > > > > Terri
> > > > >
> > > >
> > >
> >
>

WebMD is decent!

Ask about any term you want to know about and someone here can help!
We may not have the exact medical term, but, we can certainly give you
the laymen's terms for things.





--- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@...> wrote:
>
> Can anyone recommend a webpage or something so I can learn all these
> medical terms?  Sometimes I feel like it is all a diffrent language.
>
> Thanks
> Terri
>

I'm much like Jon. I have a fully functioning J Pouch and pretty much
eat what I want, though there are certain foods that I am quite
careful with eating!

I take no metamucil or immodium, etc... and just let things run their
course.

If your body doesn't tolerate it at first, try try again at a later
date. Your body learns/adapts and accepts things all over again.

Early on after surgery, one must be mindful and eat "bland" diet until
things settle in some.....and until some healing has taken place.

Soon enough though, we can eat what we want. We just learn with
certain foods we eat there are consequences! :-)

--- In gardnerssyndrome@yahoogroups.com, <olis1@...> wrote:
>
> Terri,
>
> My diet changed after the surgery but gradually changed back and now
i can eat salads, raw veggies, you name it.  I do take metamucil
wafers with every meal and it really helps.  Time brings things more
back to normal.  The small intestine takes up the work of the large.
>
> Jon
>
> ---- Terri <chimp1984a@...> wrote:
> > We are in Clayton (just south of Raleigh)  Her doctor is in Chapel
> > Hill (unc - Dr. Freeman)  We have been having alot of tests lately.
> > She has had her scoping and the doctor said she has more that 100 (of
> > course I knew that because she had 150 last time) The Doctor told us
> > that she did not count them.  She also has polyps in her stomach
> > now.  She has been in alot of pain and it turns out that her stomach
> > is all rare and bleeding.  (we have told that doctors that she has
> > had stomach pain but the just pooh poohed it)  The doctor said it is
> > up to us when we want the surgery and that we could talk to the
> > surgeon about it.  She did say that she would like to see more weight
> > on my daughter (she is 5ft and weighs 70lbs)  She was prescribed
> > medication for her stomach and they hope that once that heals alittle
> > she will be able to put on some weight.  We are trying to adjust her
> > diet to be healthier.  The doctors are telling us that after the
> > surgery there will need to be NO change to her diet but I find that
> > really hard to believe.  I would think she would have digestion
> > issues or such.  Some one has recommended Picnoginal (sp?) to us.  Do
> > you know anything about it?
> >
> > Thank you so much.
> >
> > Terri
> >
> >
> > --- In gardnerssyndrome@yahoogroups.com, "charles99_9"
> > <charles99_9@> wrote:
> > >
> > > Terri,
> > >
> > > Like I'd said in a previous posting, I am from NC and would be
> > willing
> > > and able to help you find a good GI and Surgeon who are both
> > familiar
> > > with FAP (my GI and Surgeon!) for good opinions.
> > >
> > > As for my personal opinion on your daughters situation. Certainly
> > 150
> > > polyps is alot, however, her colon is NOT riddled with thousands
> > upon
> > > thousands of polyps like mine was. That being said, my opinion would
> > > be to keep constant surveilance on the colon via regular
> > colonoscopy,
> > > also doing Upper Endoscopy using a side viewing scope and make sure
> > to
> > > biopsy the papilla, watching the ampulla of vater and being
> > vigilant.
> > > When more polyps present, then I might consider surgery......that's
> > my
> > > personal opinion.
> > >
> > > I'd also get your daughter on the natural meds I'm taking in lieu of
> > > celebrex to try and retard and inhibit growth of polyps.
> > >
> > > Email me, I can help you in NC maybe.
> > >
> > > Charlie
> > >
> > > --- In gardnerssyndrome@yahoogroups.com, "Terri" <chimp1984a@>
> > wrote:
> > > >
> > > > Hi, my name is Terri and my daughter has Gardners syndrome.  She
> > is
> > > > 12.  She has had one scoping a year ago (150 or so polyps found)
> > 5
> > > > biops all negative.  She is going back on the 28th for her next
> > > > scoping.  This time she will also have an endoscopy done.  It
> > seems
> > > > really hard to find information about this.  The doctor that did
> > the
> > > > first scope made it seem like 150 was not a big deal.  But we
> > have
> > > > since moved and her new doctor seemed really shocked that she had
> > that
> > > > many and is already talking surgery.  Can anyone give me their
> > imput?
> > > >
> > > > Thanks!
> > > > Terri
> > > >
> > >
> >
> >
>

I’m very curious to know if low body weight is common in children with
FAP/Gardners.  Anyone???  My 9 ½ year old daughter is 52” and only 56#.  My
husband does not have an identifiable gene so we cannot have her tested.  We
will know more when she starts her scopes in a couple years.



-----Original Message-----
From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Terri
Sent: Tuesday, March 04, 2008 4:30 PM
To: gardnerssyndrome@yahoogroups.com
Subject: [Gardners Syndrome] Re: Hello!



It seems that our doctor really doesn't know about Gardners. She
seems to be getting her info from the pediatric surgeon. She is
always going on.."the surgeon said this..." and "I will ask the
surgeon about that..". We would love a recommendation if that would
not be too much trouble.

We are hoping that the prilosec will heal up her stomach and she will
at least gain alittle. Even 5lbs would be good.

Thanks
Terri

--- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "charles99_9"
<charles99_9@...> wrote:
>
> Terri,
>
> Hmmmm..........you could call my Colon-Rectal Surgeon in Charlotte,
> also my GI in Charlotte and maybe he/they could recommend someone
that
> is closer to you. Otherwise, I'd say you could come and see them in
> Charlotte. They are BOTH knowledgable and listen to us FAPers. Both
> are kind and open.
>
> Stomach polyps are quite common with us FAPers, i.e. Fundic Gland
> Polyps. I have 50+/- in mine. We surveil them and keep an eye on
them.
> Making sure we watch to make sure they don't change to adenomas.
>
> With your daughter weighing only 70 lbs, I'd say a bit more weight
> would be a good thing, but, there is the chance she may not be able
to
> put on more weight due to colonic polyps, etc.....
>
> I can maybe call my GI/Surgeon and see if I can get a recommendation
> for someone in your area..........sounds like maybe yours isn't "up"
> on FAP and that's what is really needed. :-)
>
> All the best.
>
> Charlie
>
> --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Terri" <chimp1984a@>
wrote:
> >
> > We are in Clayton (just south of Raleigh) Her doctor is in
Chapel
> > Hill (unc - Dr. Freeman) We have been having alot of tests
lately.
> > She has had her scoping and the doctor said she has more that 100
(of
> > course I knew that because she had 150 last time) The Doctor told
us
> > that she did not count them. She also has polyps in her stomach
> > now. She has been in alot of pain and it turns out that her
stomach
> > is all rare and bleeding. (we have told that doctors that she
has
> > had stomach pain but the just pooh poohed it) The doctor said it
is
> > up to us when we want the surgery and that we could talk to the
> > surgeon about it. She did say that she would like to see more
weight
> > on my daughter (she is 5ft and weighs 70lbs) She was prescribed
> > medication for her stomach and they hope that once that heals
alittle
> > she will be able to put on some weight. We are trying to adjust
her
> > diet to be healthier. The doctors are telling us that after the
> > surgery there will need to be NO change to her diet but I find
that
> > really hard to believe. I would think she would have digestion
> > issues or such. Some one has recommended Picnoginal (sp?) to
us. Do
> > you know anything about it?
> >
> > Thank you so much.
> >
> > Terri
> >
> >
> > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "charles99_9"
> > <charles99_9@> wrote:
> > >
> > > Terri,
> > >
> > > Like I'd said in a previous posting, I am from NC and would be
> > willing
> > > and able to help you find a good GI and Surgeon who are both
> > familiar
> > > with FAP (my GI and Surgeon!) for good opinions.
> > >
> > > As for my personal opinion on your daughters situation.
Certainly
> > 150
> > > polyps is alot, however, her colon is NOT riddled with
thousands
> > upon
> > > thousands of polyps like mine was. That being said, my opinion
would
> > > be to keep constant surveilance on the colon via regular
> > colonoscopy,
> > > also doing Upper Endoscopy using a side viewing scope and make
sure
> > to
> > > biopsy the papilla, watching the ampulla of vater and being
> > vigilant.
> > > When more polyps present, then I might consider
surgery......that's
> > my
> > > personal opinion.
> > >
> > > I'd also get your daughter on the natural meds I'm taking in
lieu of
> > > celebrex to try and retard and inhibit growth of polyps.
> > >
> > > Email me, I can help you in NC maybe.
> > >
> > > Charlie
> > >
> > > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Terri" <chimp1984a@>
> > wrote:
> > > >
> > > > Hi, my name is Terri and my daughter has Gardners syndrome.
She
> > is
> > > > 12. She has had one scoping a year ago (150 or so polyps
found)
> > 5
> > > > biops all negative. She is going back on the 28th for her
next
> > > > scoping. This time she will also have an endoscopy done. It
> > seems
> > > > really hard to find information about this. The doctor that
did
> > the
> > > > first scope made it seem like 150 was not a big deal. But we
> > have
> > > > since moved and her new doctor seemed really shocked that she
had
> > that
> > > > many and is already talking surgery. Can anyone give me
their
> > imput?
> > > >
> > > > Thanks!
> > > > Terri
> > > >
> > >
> >
>





[Non-text portions of this message have been removed]

Nasogastric tube which is inserted into the nose and passes into the
stomach.  Can be used for suctioning or as a feeding tube.



-----Original Message-----
From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Terri
Sent: Tuesday, March 04, 2008 4:31 PM
To: gardnerssyndrome@yahoogroups.com
Subject: [Gardners Syndrome] Re: Hello!



What is a NG tube?

Terri

--- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Cathie" <tckeysermi@...>
wrote:
>
> Because of the NG tube (5 days no eating). He wanted to eat and
show
> the Dr he was ready to come home.
>
> We came home on Thurs--we took him out Sat to help sell for the
Fire
> Post and Sun Fire Post (only we wouldn't let him go on runs or
carry
> equipment)for testing. Incision is longer than the one for colon
> removal.
>
> Monday back a school. If he is up to things we won't let him
dwell.
> Dad & I must talk but until ready we don't tell him right away.
> Before all this he was crying and making comments about being a
> ticking time bomb, so for now this may be our best course.
>
> Our Ped GI is contacting the UofM Drs to help get him a team. At
> this point we told him that we need Drs that will grow with him
into
> adulthood and that he needs a special tool and that we will most
> likely do another scope right after school lets out. But Dad & I
are
> concerned things have moved a lot faster than we had hoped.
>
> Thanks for the interest.
>
> Cathie
>
> --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Terri" <chimp1984a@>
> wrote:
> >
> > I am sorry to hear of your sons troubles. Our doctors have not
> > removed any of her polyps. Just did some biopsies. It seems
like
> > they feel what is the point since more will grow and she will
need
> to
> > have the surgery anyways.
> >
> > I hope you son is doing well. How did he handle the surgery and
> > recovery?
> >
> > Terri
> >
> >
> >
> > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Cathie" <tckeysermi@>
> > wrote:
> > >
> > > Terri,
> > >
> > > It sounds like my son. I know that our ped GI hoped to wait
> until
> > our
> > > son was a little taller and maybe had less growing to do. So
we
> > > removed many polyps when he was 12, when he was 13 approx 1
year
> on
> > his
> > > second scope, we needed to remove his colon. It is not what
you
> > want
> > > to hear details on www.mayoclinic.org seemed simple enough
for
> > us to
> > > understand, this group helped talk meds with the GI and the
other
> > risks
> > > with them. That was a rough year and I send lots of hugs,
> tissues,
> > and
> > > a shoulder to rest on. You probably feel like your drowning
with
> > no
> > > shore in site to swim to, this will pass, your mothering will
> step
> > up
> > > and help you do the best for your daughter and move forward.
> > >
> > > We talked about the scopes with his ped Dr. also, while she is
> not
> > a
> > > familar it helped to have another Dr. talk to us. (we cried
alot-
> -
> > our
> > > son wasn't allowed to see this, because I wanted him to have
only
> > > postive thoughts and attitude as we moved towards surgery)
> > >
> > > Also, when we found out about the colon we found out that his
> > stomach
> > > and deodeum was also carpeted with tiny polyps (not at the
> > removable
> > > stage) and told when they start getting bigger if to many come
at
> > once
> > > we will not be able to stop remove them with the scope. (I'll
> write
> > > more later to this group because we just had other news and
> issues)
> > >
> > > Anyway he is 15 with 5 more scopes behind him and until this
last
> > week
> > > we have been doing great--and he felt he would live until he
was
> 80
> > > plus.
> > >
> > > Cathie
> > >
> > >
> > >
> > > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
yahoogroups.com, "Terri" <chimp1984a@>
> > wrote:
> > > >
> > > > Hi, my name is Terri and my daughter has Gardners syndrome.
> She
> > is
> > > > 12. She has had one scoping a year ago (150 or so polyps
> found)
> > 5
> > > > biops all negative. She is going back on the 28th for her
next
> > > > scoping. This time she will also have an endoscopy done. It
> > seems
> > > > really hard to find information about this. The doctor that
> did
> > the
> > > > first scope made it seem like 150 was not a big deal. But we
> > have
> > > > since moved and her new doctor seemed really shocked that she
> had
> > > that
> > > > many and is already talking surgery. Can anyone give me
their
> > imput?
> > > >
> > > > Thanks!
> > > > Terri
> > > >
> > >
> >
>





[Non-text portions of this message have been removed]

We all would like to know what to look for in our kids that might have FAP.
I'm like your husband, no detectable mutation so my 6 year old and 3 year
old are unknowns.  I don't think anyone knows of obvious signs for FAP in
children other then the osteomas, bowel changes, blood in stools, etc.  I
think we tend to hear a lot of anecdotal information like "my daughter with
FAP was always constipated when she was young" or other things but there
really isn't proof for these things so I wouldn't focus too much on
something like low weight.

And the reality is a very large percentage of children with FAP will not
have any problems until they are in there late teens.  But we all need to be
careful and watch the kids carefully for signs.

Best of luck to you.

Jon

   -----Original Message-----
   From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com]On Behalf Of Melissa
   Sent: Tuesday, March 04, 2008 6:44 PM
   To: gardnerssyndrome@yahoogroups.com
   Subject: [Gardners Syndrome] Re: Hello!


   I’m very curious to know if low body weight is common in children with
   FAP/Gardners. Anyone??? My 9 ½ year old daughter is 52” and only 56#. My
   husband does not have an identifiable gene so we cannot have her tested.
We
   will know more when she starts her scopes in a couple years.

   -----Original Message-----
   From: gardnerssyndrome@yahoogroups.com
   [mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Terri
   Sent: Tuesday, March 04, 2008 4:30 PM
   To: gardnerssyndrome@yahoogroups.com
   Subject: [Gardners Syndrome] Re: Hello!

   It seems that our doctor really doesn't know about Gardners. She
   seems to be getting her info from the pediatric surgeon. She is
   always going on.."the surgeon said this..." and "I will ask the
   surgeon about that..". We would love a recommendation if that would
   not be too much trouble.

   We are hoping that the prilosec will heal up her stomach and she will
   at least gain alittle. Even 5lbs would be good.

   Thanks
   Terri

   --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
   yahoogroups.com, "charles99_9"
   <charles99_9@...> wrote:
   >
   > Terri,
   >
   > Hmmmm..........you could call my Colon-Rectal Surgeon in Charlotte,
   > also my GI in Charlotte and maybe he/they could recommend someone
   that
   > is closer to you. Otherwise, I'd say you could come and see them in
   > Charlotte. They are BOTH knowledgable and listen to us FAPers. Both
   > are kind and open.
   >
   > Stomach polyps are quite common with us FAPers, i.e. Fundic Gland
   > Polyps. I have 50+/- in mine. We surveil them and keep an eye on
   them.
   > Making sure we watch to make sure they don't change to adenomas.
   >
   > With your daughter weighing only 70 lbs, I'd say a bit more weight
   > would be a good thing, but, there is the chance she may not be able
   to
   > put on more weight due to colonic polyps, etc.....
   >
   > I can maybe call my GI/Surgeon and see if I can get a recommendation
   > for someone in your area..........sounds like maybe yours isn't "up"
   > on FAP and that's what is really needed. :-)
   >
   > All the best.
   >
   > Charlie
   >
   > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
   yahoogroups.com, "Terri" <chimp1984a@>
   wrote:
   > >
   > > We are in Clayton (just south of Raleigh) Her doctor is in
   Chapel
   > > Hill (unc - Dr. Freeman) We have been having alot of tests
   lately.
   > > She has had her scoping and the doctor said she has more that 100
   (of
   > > course I knew that because she had 150 last time) The Doctor told
   us
   > > that she did not count them. She also has polyps in her stomach
   > > now. She has been in alot of pain and it turns out that her
   stomach
   > > is all rare and bleeding. (we have told that doctors that she
   has
   > > had stomach pain but the just pooh poohed it) The doctor said it
   is
   > > up to us when we want the surgery and that we could talk to the
   > > surgeon about it. She did say that she would like to see more
   weight
   > > on my daughter (she is 5ft and weighs 70lbs) She was prescribed
   > > medication for her stomach and they hope that once that heals
   alittle
   > > she will be able to put on some weight. We are trying to adjust
   her
   > > diet to be healthier. The doctors are telling us that after the
   > > surgery there will need to be NO change to her diet but I find
   that
   > > really hard to believe. I would think she would have digestion
   > > issues or such. Some one has recommended Picnoginal (sp?) to
   us. Do
   > > you know anything about it?
   > >
   > > Thank you so much.
   > >
   > > Terri
   > >
   > >
   > > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
   yahoogroups.com, "charles99_9"
   > > <charles99_9@> wrote:
   > > >
   > > > Terri,
   > > >
   > > > Like I'd said in a previous posting, I am from NC and would be
   > > willing
   > > > and able to help you find a good GI and Surgeon who are both
   > > familiar
   > > > with FAP (my GI and Surgeon!) for good opinions.
   > > >
   > > > As for my personal opinion on your daughters situation.
   Certainly
   > > 150
   > > > polyps is alot, however, her colon is NOT riddled with
   thousands
   > > upon
   > > > thousands of polyps like mine was. That being said, my opinion
   would
   > > > be to keep constant surveilance on the colon via regular
   > > colonoscopy,
   > > > also doing Upper Endoscopy using a side viewing scope and make
   sure
   > > to
   > > > biopsy the papilla, watching the ampulla of vater and being
   > > vigilant.
   > > > When more polyps present, then I might consider
   surgery......that's
   > > my
   > > > personal opinion.
   > > >
   > > > I'd also get your daughter on the natural meds I'm taking in
   lieu of
   > > > celebrex to try and retard and inhibit growth of polyps.
   > > >
   > > > Email me, I can help you in NC maybe.
   > > >
   > > > Charlie
   > > >
   > > > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
   yahoogroups.com, "Terri" <chimp1984a@>
   > > wrote:
   > > > >
   > > > > Hi, my name is Terri and my daughter has Gardners syndrome.
   She
   > > is
   > > > > 12. She has had one scoping a year ago (150 or so polyps
   found)
   > > 5
   > > > > biops all negative. She is going back on the 28th for her
   next
   > > > > scoping. This time she will also have an endoscopy done. It
   > > seems
   > > > > really hard to find information about this. The doctor that
   did
   > > the
   > > > > first scope made it seem like 150 was not a big deal. But we
   > > have
   > > > > since moved and her new doctor seemed really shocked that she
   had
   > > that
   > > > > many and is already talking surgery. Can anyone give me
   their
   > > imput?
   > > > >
   > > > > Thanks!
   > > > > Terri
   > > > >
   > > >
   > >
   >

   [Non-text portions of this message have been removed]






[Non-text portions of this message have been removed]

Not that I know of.  My niece is 10 and has FAP...she is almost 5 feet
tall (!!!!!) and is a TAD overweight (just a little belly and some
weight under her chin, but she is still pretty skinny).  But we suspect
she will be having a growth spirt soon and that is why she has gained
weight in those areas.  Her mom is careful about not feeding her too
much sugary stuff, and she loves salads.  That is my experience with
Katie.

Kim


--- In gardnerssyndrome@yahoogroups.com, "Melissa" <mjberry@...> wrote:
>
> I'm very curious to know if low body weight is common in children
with
> FAP/Gardners. Anyone??? My 9 ½ year old daughter is 52" and
only 56#. My
> husband does not have an identifiable gene so we cannot have her
tested. We
> will know more when she starts her scopes in a couple years.
>
>
>
> -----Original Message-----
> From: gardnerssyndrome@yahoogroups.com
> [mailto:gardnerssyndrome@yahoogroups.com] On Behalf Of Terri
> Sent: Tuesday, March 04, 2008 4:30 PM
> To: gardnerssyndrome@yahoogroups.com
> Subject: [Gardners Syndrome] Re: Hello!
>
>
>
> It seems that our doctor really doesn't know about Gardners. She
> seems to be getting her info from the pediatric surgeon. She is
> always going on.."the surgeon said this..." and "I will ask the
> surgeon about that..". We would love a recommendation if that would
> not be too much trouble.
>
> We are hoping that the prilosec will heal up her stomach and she will
> at least gain alittle. Even 5lbs would be good.
>
> Thanks
> Terri
>
> --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
> yahoogroups.com, "charles99_9"
> charles99_9@ wrote:
> >
> > Terri,
> >
> > Hmmmm..........you could call my Colon-Rectal Surgeon in Charlotte,
> > also my GI in Charlotte and maybe he/they could recommend someone
> that
> > is closer to you. Otherwise, I'd say you could come and see them in
> > Charlotte. They are BOTH knowledgable and listen to us FAPers. Both
> > are kind and open.
> >
> > Stomach polyps are quite common with us FAPers, i.e. Fundic Gland
> > Polyps. I have 50+/- in mine. We surveil them and keep an eye on
> them.
> > Making sure we watch to make sure they don't change to adenomas.
> >
> > With your daughter weighing only 70 lbs, I'd say a bit more weight
> > would be a good thing, but, there is the chance she may not be able
> to
> > put on more weight due to colonic polyps, etc.....
> >
> > I can maybe call my GI/Surgeon and see if I can get a recommendation
> > for someone in your area..........sounds like maybe yours isn't "up"
> > on FAP and that's what is really needed. :-)
> >
> > All the best.
> >
> > Charlie
> >
> > --- In gardnerssyndrome@ <mailto:gardnerssyndrome%40yahoogroups.com>
> yahoogroups.com, "Terri" <chimp1984a@>
> wrote:
> > >
> > > We are in Clayton (just south of Raleigh) Her doctor is in
> Chapel
> > > Hill (unc - Dr. Freeman) We have been having alot of tests
> lately.
> > > She has had her scoping and the doctor said she has more that 100
> (of
> > > course I knew that because she had 150 last time) The Doctor told
> us
> > > that she did not count them. She also has polyps in her stomach
> > > now. She has been in alot of pain and it turns out that her
> stomach
> > > is all rare and bleeding. (we have told that doctors that she
> has
> > > had stomach pain but the just pooh poohed it) The doctor said it
> is
> > > up to us when we want the surgery and that we could talk to the
> > > surgeon about it. She did say that she would like to see more
> weight
> > > on my daughter (she is 5ft and weighs 70lbs) She was prescribed
> > > medication for her stomach and they hope that once that heals
> alittle
> > > she will be able to put on some weight. We are trying to adjust
> her
> > > diet to be healthier. The doctors are telling us that after the
> > > surgery there will need to be NO change to her diet but I find
> that
> > > really hard to believe. I would think she would have digestion
> > > issues or such. Some one has recommended Picnoginal (sp?) to
> us. Do
> > > you know anything about it?
> > >
> > > Thank you so much.
> > >
> > > Terri
> > >
> > >
> > > --- In gardnerssyndrome@
<mailto:gardnerssyndrome%40yahoogroups.com>
> yahoogroups.com, "charles99_9"
> > > <charles99_9@> wrote:
> > > >
> > > > Terri,
> > > >
> > > > Like I'd said in a previous posting, I am from NC and would be
> > > willing
> > > > and able to help you find a good GI and Surgeon who are both
> > > familiar
> > > > with FAP (my GI and Surgeon!) for good opinions.
> > > >
> > > > As for my personal opinion on your daughters situation.
> Certainly
> > > 150
> > > > polyps is alot, however, her colon is NOT riddled with
> thousands
> > > upon
> > > > thousands of polyps like mine was. That being said, my opinion
> would
> > > > be to keep constant surveilance on the colon via regular
> > > colonoscopy,
> > > > also doing Upper Endoscopy using a side viewing scope and make
> sure
> > > to
> > > > biopsy the papilla, watching the ampulla of vater and being
> > > vigilant.
> > > > When more polyps present, then I might consider
> surgery......that's
> > > my
> > > > personal opinion.
> > > >
> > > > I'd also get your daughter on the natural meds I'm taking in
> lieu of
> > > > celebrex to try and retard and inhibit growth of polyps.
> > > >
> > > > Email me, I can help you in NC maybe.
> > > >
> > > > Charlie
> > > >
> > > > --- In gardnerssyndrome@
<mailto:gardnerssyndrome%40yahoogroups.com>
> yahoogroups.com, "Terri" <chimp1984a@>
> > > wrote:
> > > > >
> > > > > Hi, my name is Terri and my daughter has Gardners syndrome.
> She
> > > is
> > > > > 12. She has had one scoping a year ago (150 or so polyps
> found)
> > > 5
> > > > > biops all negative. She is going back on the 28th for her
> next
> > > > > scoping. This time she will also have an endoscopy done. It
> > > seems
> > > > > really hard to find information about this. The doctor that
> did
> > > the
> > > > > first scope made it seem like 150 was not a big deal. But we
> > > have
> > > > > since moved and her new doctor seemed really shocked that she
> had
> > > that
> > > > > many and is already talking surgery. Can anyone give me
> their
> > > imput?
> > > > >
> > > > > Thanks!
> > > > > Terri
> > > > >
> > > >
> > >
> >
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

My name is Caroline, i am 34. I have FAP & i had my large bowel removed
11 years ago. i'm having an operation in a few months time to have a
colostomy, then have a J Pouch. As you can imagine i'm very nervous
about all this.

Caroline,

We'll be praying for you.

Cathie Keyser


--- In gardnerssyndrome@yahoogroups.com, "carolinehurt03"
<carolinehurt03@...> wrote:
>
> My name is Caroline, i am 34. I have FAP & i had my large bowel
removed
> 11 years ago. i'm having an operation in a few months time to have a
> colostomy, then have a J Pouch. As you can imagine i'm very nervous
> about all this.
>

I hope everything goes smoothly for you.  You will be in my thoughts.

Terri


--- In gardnerssyndrome@yahoogroups.com, "carolinehurt03"
<carolinehurt03@...> wrote:
>
> My name is Caroline, i am 34. I have FAP & i had my large bowel
removed
> 11 years ago. i'm having an operation in a few months time to have a
> colostomy, then have a J Pouch. As you can imagine i'm very nervous
> about all this.
>

Caroline,

You are in my thoughts and prayers.

Kathleen



**************It's Tax Time! Get tips, forms, and advice on AOL Money &
Finance.      (http://money.aol.com/tax?NCID=aolprf00030000000001)


[Non-text portions of this message have been removed]

Caroline,

Hello. I'm curious about something.........please bear with me and
please don't be offended, I'm trying to make sure I understand.

You had your Colon removed 11 years ago, and in a few months they are
going to be making a colostomy for you? I don't understand..........if
your colon has been removed, it is not possible to make a colostomy?
Do you currently have a IRA (straight pull thru?) or something else
and they are going to make an Ileostomy for you, at the same time
form/make the J Pouch.....give it some time to heal, then close the
Temp Ileo?

Again, just trying to understand and not trying to offend.

In any event, glad to have you here with us in our FAP/GS support
group. We all will keep you in our thoughts and prayers, hoping for
the best possible outcome.

Charlie


--- In gardnerssyndrome@yahoogroups.com, "carolinehurt03"
<carolinehurt03@...> wrote:
>
> My name is Caroline, i am 34. I have FAP & i had my large bowel removed
> 11 years ago. i'm having an operation in a few months time to have a
> colostomy, then have a J Pouch. As you can imagine i'm very nervous
> about all this.
>

Also there is a great group (support) for folks with and who are going
to have the J Pouch surgery.

www.j-pouch.org

Before you go in there, keep in mind, it is strictly a support group
and most of the folks who post there are having issues or need
support. Most people who have J Pouches (myself included) have no
issues at all.

Please feel free to ask questions here also, there are quite a few of
us with J Pouches or those of us who know quite a bit about J Pouches.


Charlie

--- In gardnerssyndrome@yahoogroups.com, "carolinehurt03"
<carolinehurt03@...> wrote:
>
> My name is Caroline, i am 34. I have FAP & i had my large bowel removed
> 11 years ago. i'm having an operation in a few months time to have a
> colostomy, then have a J Pouch. As you can imagine i'm very nervous
> about all this.
>

I hope someone can help. We that have ileostomies due to FAP  are we
advised to not take Delayed,Timed,Slowed,Rapid released meds? I was
just wondering about this. At one time I was told not to take this type
of med but I am on a Delayed Release Pancreas med and my Lipase and
Amylase are not coming down. I was diagnosised with Chronic
Pancreatits. I am having another scope on Mon. to see if I have more
Adenomas in my Duodenum. Thanks for anyone who can help. Brenda

Has anyone heard from Cheryl?  Cheryl!! Where are you?

Because of Him,
Darlene
The Clay Factory
www.clayfactory.com
Childrens Handprints & Pet Pawprint Kits

Brenda,

Those of us with Ostomies, J Pouches, K Pouches, IRA's and any other
form of non "normal" Colon should not expect the same effect of time
delayed drugs. Our systems dispense/deal with these and any other
pills in a much different route than normal. :-)

Hope that helps.

Charlie


--- In gardnerssyndrome@yahoogroups.com, "brenda" <iggytwiggy@...> wrote:
>
> I hope someone can help. We that have ileostomies due to FAP  are we
> advised to not take Delayed,Timed,Slowed,Rapid released meds? I was
> just wondering about this. At one time I was told not to take this type
> of med but I am on a Delayed Release Pancreas med and my Lipase and
> Amylase are not coming down. I was diagnosised with Chronic
> Pancreatits. I am having another scope on Mon. to see if I have more
> Adenomas in my Duodenum. Thanks for anyone who can help. Brenda
>

I personally have no trouble with drugs absorbing like this.  I think my
system (IRA) has slowed to the point where a drug gets absorbed no problem.

Jon
   -----Original Message-----
   From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com]On Behalf Of charles99_9
   Sent: Thursday, March 06, 2008 8:54 PM
   To: gardnerssyndrome@yahoogroups.com
   Subject: [Gardners Syndrome] Re: meds


   Brenda,

   Those of us with Ostomies, J Pouches, K Pouches, IRA's and any other
   form of non "normal" Colon should not expect the same effect of time
   delayed drugs. Our systems dispense/deal with these and any other
   pills in a much different route than normal. :-)

   Hope that helps.

   Charlie

   --- In gardnerssyndrome@yahoogroups.com, "brenda" <iggytwiggy@...> wrote:
   >
   > I hope someone can help. We that have ileostomies due to FAP are we
   > advised to not take Delayed,Timed,Slowed,Rapid released meds? I was
   > just wondering about this. At one time I was told not to take this type
   > of med but I am on a Delayed Release Pancreas med and my Lipase and
   > Amylase are not coming down. I was diagnosised with Chronic
   > Pancreatits. I am having another scope on Mon. to see if I have more
   > Adenomas in my Duodenum. Thanks for anyone who can help. Brenda
   >






[Non-text portions of this message have been removed]

Yeah, I think its been a couple of weeks.  Cheryl??

Jon

   -----Original Message-----
   From: gardnerssyndrome@yahoogroups.com
[mailto:gardnerssyndrome@yahoogroups.com]On Behalf Of Darlene Buckel
   Sent: Thursday, March 06, 2008 6:51 PM
   To: gardnerssyndrome@yahoogroups.com
   Subject: Re: [Gardners Syndrome]Where's Cheryl?



   Has anyone heard from Cheryl? Cheryl!! Where are you?

   Because of Him,
   Darlene
   The Clay Factory
   www.clayfactory.com
   Childrens Handprints & Pet Pawprint Kits





[Non-text portions of this message have been removed]

Cheryl, we miss you.......

As Always ~ Steph ~


---------------------------------
Never miss a thing.   Make Yahoo your homepage.

[Non-text portions of this message have been removed]

I have never thought about this, but then I have only had a section of
colon removed, not all. But I would have thought that as long as the
transit time in the gut is normal then slow-release tablets should be
okay. Good to keep in mind though.

Wendy,

How are you doing with the chemo?  I just want you to know  that I am
thinking about you.

Prayers from my home to yours,
Kathleen



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[Non-text portions of this message have been removed]