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Re: [The Ileostomy Group] Re: New...Dad may be coming home Thurs...need help! =)

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  • Chris Casey
    Thanks, Mom feels the same way. She was told someone would come in before discharge. She was told this back Friday morning (he got out of surgery about 7pm
    Message 1 of 3 , Jan 30, 2007
      Thanks, Mom feels the same way. She was told someone would come in before
      discharge. She was told this back Friday morning (he got out of surgery
      about 7pm Thurs. night), and she's asked every day. The orders keep
      'disappearing'. I followed the dr out last night and checked at the nurses
      station. He had just RE-ordered one. I know because I saw the order
      physically with my eyes on his chart. Today? Our awesome nurse (really the
      best we've had! =) said there was nothing in there...it's gone. HOW does an
      inked order disappear???? GRRR

      She's been told squat, but I did manage to find a lot of good info for her
      online last night. Also talked to Home Health today and that gal really
      knows her stuff. Said they could definently show her and teach her. She was
      appalled at how the hospital has been handling it and assured me that if I
      could get the orders over to them (they have to have them or they can't do
      anything), they'd take care of the rest...teaching her, ordering his
      supplies, wound care, flushing his PICC line, arranging for bed, walker,
      etc. They do all that. Physical therapy, even, which couldn't hurt.

      Mom's still trying to get somebody...ANYBODY...to come show her something,
      but has come to the conclusion that it is most likely an effort in futility.
      She sounded VERY relieved to hear about the Home Health gal and all that.
      I'm so glad! I was worried she wouldn't let us get in a nurse...then what?!
      lol

      Thanks for the link, I'll definently be checking it out! =)
      Chris

      ----- Original Message -----
      From: "carlene" <softailcg3@...>
      To: <ileostomy@yahoogroups.com>
      Sent: Wednesday, January 31, 2007 1:29 PM
      Subject: [The Ileostomy Group] Re: New...Dad may be coming home Thurs...need
      help! =)


      > ---you have to have a stoma nurse look at your dad before he leaves
      > the hospital. I would not take him no where until this happens!!
      > PLEASE! i've had my stoma since nov. 2006. there no way some one can
      > come home without someone telling them how to take care of it. red
      > is the healthly color for a stoma, not black.the wafer (part on the
      > skin can be cahanged about ev. 3 dys) bag everyday if you want at
      > least ev. 2 days. can't believe they are doing this!! it will shrink
      > in a couple of wks. go to this web site theres great people there
      > that can describe everything really well it a great support group
      > also. please go there (crohns zone.u.k.org.) think thats it if not
      > just crohns zone and click on first link. GOOD LUCK!! In
      > ileostomy@yahoogroups.com, "Tim & Michelle" <coyote@...> wrote:
      > >
      > > Chris,
      > >
      > > First things first. You HAVE to be seen by an ostomy nurse.
      > Demand that to occur before discharge. You can't go home and be
      > expected to care for something that you have no experience with. In
      > my experience, most of your questions will be answered after you see
      > the ostomy nurse.
      > >
      > > And make sure that you are seeing a true ostomy nurse, and not an
      > RN on the floor at the time who may have some ostomy experience. If
      > you are in a larger hospital, there should be an ostomy nurse on
      > staff.
      > >
      > > The only other advice I can give you is make sure he chews his
      > food extremely well. It needs to be mashed by his teeth before it
      > heads south or else you will end up with blockages. No popcorn, raw
      > veggies, or peanuts until he is healed up, and then after only tiny
      > tiny amounts, chewed well, to see how he handles them. He'll only
      > be eating soft foods for a week or so before the Doc will clear him
      > for anything substantial.
      > >
      > > Check in to some home health care (visiting nurses) if they are
      > covered by the insurance. They can check vitals, observe the stoma,
      > and answer any questions that pop up afterward.
      > >
      > > You can always ask questions here too.
      > >
      > > Good Luck.
      > > Tim
      > >
      > > ----- Original Message -----
      > > From: ohec2002
      > > To: ileostomy@yahoogroups.com
      > > Sent: Tuesday, January 30, 2007 8:43 PM
      > > Subject: [The Ileostomy Group] New...Dad may be coming home
      > Thurs...need help! =)
      > >
      > >
      > > My dad (61yo) just had an ileostomy put in last Thurs. This was
      > his
      > > third major abdominal surgery since Sept. The first was to
      > remove a
      > > cancerous tumor. Second to remove a huge infection 'sac'. This
      > one
      > > was to remove what we thought was a little scar tissue and
      > turned out
      > > to be a LOT...so much he ended up needing the ileostomy. This is
      > > where we are today...
      > >
      > > 1/30/07 - surgeon suggests Dad coming home tomorrow and Mom
      > panics!!
      > > They were supposed to send in an ostomy nurse for
      > training...they
      > > haven't. Dad is cleared for soft foods, but still isn't really
      > eating
      > > ANYTHING (either too tired when food comes or it's something he
      > > hates, etc). He still can't walk at all. He shuffled (with the
      > walker
      > > and the PT) to the bathroom, but that's it. He has a big (not
      > open,
      > > thankfully!) painful sore on his tailbone. His incision was left
      > > open, and is still oozing pretty good. Mom is not ready for him
      > to
      > > come home. He is ready mentally, but NOT physically.
      > >
      > > Mom managed to convince the dr to wait until at least Thurs
      > before
      > > shipping them home (which disappointed Dad greatly...once he
      > heard
      > > that the doc was willing to let him go tomorrow that is what he
      > > wanted to do!). *I* managed to convince Dad to give me at least
      > until
      > > Thurs afternoon to try and get things set up and arranged to
      > give
      > > both him and Mom as much help as possible once they get home....
      > > HELP!!!! lol
      > >
      > > I need to know what kinds of things to get...a shower seat is a
      > > given. We really needed one last time he was home. Once we can
      > get
      > > him to eating and walking at least a little, he should get
      > stronger
      > > and stronger at an ever-increasing rate, so shouldn't need a
      > WHOLE
      > > lot of help for a very long time, but the next 2-4 wks he's
      > going to
      > > need a lot. What else besides a shower seat should I have ready?
      > The
      > > house is not well-arranged (think crowded...9 people in a 2bdr)
      > for a
      > > walker, Mom has been his 'walker'. Is there anything I can get
      > to
      > > help his poor tailbone with the big sore? A donut cushion?
      > Several
      > > pillows to put under him so all BUT the sore is supported by
      > > pillows?? A special cream?
      > >
      > > What do I need to have in the way of ostomy supplies? They've
      > told us
      > > NOTHING so far. Mom's been emptying the bag herself, and
      > managing,
      > > thankfully, because none of the nurses ever check it. None of
      > them
      > > seem to know what to do with it. Where do I get the supplies?
      > (He has
      > > Medicaid...not Medicare...Medicaid) What kinds of things, tips,
      > > tricks, hints, etc do those who've dealt with ostomies know
      > about
      > > that the drs and nurses frequently DON'T know about?? (I've
      > found the
      > > been-there-done-that info is a lot of times more helpful than
      > what
      > > comes from the medical professionals)
      > >
      > > Also...clothing... I don't have any idea how big 'normal' stomas
      > are
      > > supposed to be (do they shrink as time goes by??). Mom says
      > Dad's is
      > > basically covering the whole right side of his abdomen. From
      > below
      > > where his pantline sits to above, so he definently won't be
      > going
      > > back into jeans anytime soon. He's going to have to wear
      > *something*
      > > though. Right now we're thinking maybe take a pair of sweat
      > pants,
      > > take the elastic out of the waistband and then 'hang' them on
      > him
      > > using suspenders. Any other ideas??
      > >
      > > Another thing Mom wonders/worries about... the pics we've seen
      > online
      > > all show stomas that are red or pink...healthy looking. She says
      > > there is one small area of red on Dad's and the rest is black.
      > What
      > > does this mean? Is it normal right after surgery??
      > >
      > > What kinds of things can he absolutely NOT eat? What *should* he
      > > absolutely eat/drink (I know lots of fluids, pref. water,
      > anything
      > > else)?
      > >
      > > How often do we need to change the adhesive and bag itself
      > (instead
      > > of just empty)?
      > >
      > > (asking Mom on phone now for other ??s...)
      > >
      > > Any recommendations on good brands?
      > >
      > > Preferences between 'mesh-looking something' or 'beeswax-
      > looking'
      > > something? (She thinks it is the adhesive part...she doesn't
      > know for
      > > sure) If you have a preference, why is that preferred?
      > >
      > > How do you keep the skin from getting irritated if no air is
      > getting
      > > to it and you are changing the adhesive only every 2-3 days?
      > >
      > > Do you recommend a deodorizer? What kind? How do you use it?
      > >
      > > She says "I know NOTHING, except that since no one has done
      > anything
      > > with it or even looked at it since Sun. morning, I've managed to
      > get
      > > it emptied and haven't made a mess or split a drop the last
      > couple of
      > > times. Otherwise...HELP!!!"
      > >
      > > We'd thought we had until this weekend, maybe first part of next
      > week
      > > to get all this sorted out...and were kinda waiting on the
      > ostomy
      > > nurse to come in to help get us started before figuring much
      > out.
      > > That all changed tonight when the surgeon suggested him coming
      > home
      > > tomorrow. Especially since we still haven't seen that nurse! Now
      > I'm
      > > in rush mode. I need to get Mom prepared mentally (and that
      > means
      > > training, house supplied, help arranged, etc) and Dad prepared
      > > physically for a very possible Thursday homecoming.
      > >
      > > ANY help is greatly appreciated!
      > >
      > > Thanks,
      > > Chris in TX
      > >
      > >
      > >
      > >
      > >
      > > __________ NOD32 1863 (20061113) Information __________
      > >
      > > This message was checked by NOD32 antivirus system.
      > > http://www.eset.com
      > >
      > >
      > > [Non-text portions of this message have been removed]
      > >
      >
      >
      >
      >
      > The Ileostomy Group is part of Crohn's Zone IBD Network at
      www.crohnszone.org
      >
      > |Ostomy Forum:
      http://www.crohnszone.org/index.php?name=PNphpBB2&file=viewforum&f=4
      >
      > |Ostomy Chat: http://www.bowelweb.com/chat.html
      > Yahoo! Groups Links
      >
      >
      >
      >
    • Susan Koprucki
      Chris, sounds like you are getting closer to a good path.... KEEP PUSHING! I would make them check the chart again, this is crazy. sue Chris Casey
      Message 2 of 3 , Feb 1, 2007
        Chris, sounds like you are getting closer to a good path.... KEEP PUSHING! I would make them check the chart again, this is crazy.
        sue

        Chris Casey <wmcasey@...> wrote: Thanks, Mom feels the same way. She was told someone would come in before
        discharge. She was told this back Friday morning (he got out of surgery
        about 7pm Thurs. night), and she's asked every day. The orders keep
        'disappearing'. I followed the dr out last night and checked at the nurses
        station. He had just RE-ordered one. I know because I saw the order
        physically with my eyes on his chart. Today? Our awesome nurse (really the
        best we've had! =) said there was nothing in there...it's gone. HOW does an
        inked order disappear???? GRRR

        She's been told squat, but I did manage to find a lot of good info for her
        online last night. Also talked to Home Health today and that gal really
        knows her stuff. Said they could definently show her and teach her. She was
        appalled at how the hospital has been handling it and assured me that if I
        could get the orders over to them (they have to have them or they can't do
        anything), they'd take care of the rest...teaching her, ordering his
        supplies, wound care, flushing his PICC line, arranging for bed, walker,
        etc. They do all that. Physical therapy, even, which couldn't hurt.

        Mom's still trying to get somebody...ANYBODY...to come show her something,
        but has come to the conclusion that it is most likely an effort in futility.
        She sounded VERY relieved to hear about the Home Health gal and all that.
        I'm so glad! I was worried she wouldn't let us get in a nurse...then what?!
        lol

        Thanks for the link, I'll definently be checking it out! =)
        Chris

        ----- Original Message -----
        From: "carlene" <softailcg3@...>
        To: <ileostomy@yahoogroups.com>
        Sent: Wednesday, January 31, 2007 1:29 PM
        Subject: [The Ileostomy Group] Re: New...Dad may be coming home Thurs...need
        help! =)

        > ---you have to have a stoma nurse look at your dad before he leaves
        > the hospital. I would not take him no where until this happens!!
        > PLEASE! i've had my stoma since nov. 2006. there no way some one can
        > come home without someone telling them how to take care of it. red
        > is the healthly color for a stoma, not black.the wafer (part on the
        > skin can be cahanged about ev. 3 dys) bag everyday if you want at
        > least ev. 2 days. can't believe they are doing this!! it will shrink
        > in a couple of wks. go to this web site theres great people there
        > that can describe everything really well it a great support group
        > also. please go there (crohns zone.u.k.org.) think thats it if not
        > just crohns zone and click on first link. GOOD LUCK!! In
        > ileostomy@yahoogroups.com, "Tim & Michelle" <coyote@...> wrote:
        > >
        > > Chris,
        > >
        > > First things first. You HAVE to be seen by an ostomy nurse.
        > Demand that to occur before discharge. You can't go home and be
        > expected to care for something that you have no experience with. In
        > my experience, most of your questions will be answered after you see
        > the ostomy nurse.
        > >
        > > And make sure that you are seeing a true ostomy nurse, and not an
        > RN on the floor at the time who may have some ostomy experience. If
        > you are in a larger hospital, there should be an ostomy nurse on
        > staff.
        > >
        > > The only other advice I can give you is make sure he chews his
        > food extremely well. It needs to be mashed by his teeth before it
        > heads south or else you will end up with blockages. No popcorn, raw
        > veggies, or peanuts until he is healed up, and then after only tiny
        > tiny amounts, chewed well, to see how he handles them. He'll only
        > be eating soft foods for a week or so before the Doc will clear him
        > for anything substantial.
        > >
        > > Check in to some home health care (visiting nurses) if they are
        > covered by the insurance. They can check vitals, observe the stoma,
        > and answer any questions that pop up afterward.
        > >
        > > You can always ask questions here too.
        > >
        > > Good Luck.
        > > Tim
        > >
        > > ----- Original Message -----
        > > From: ohec2002
        > > To: ileostomy@yahoogroups.com
        > > Sent: Tuesday, January 30, 2007 8:43 PM
        > > Subject: [The Ileostomy Group] New...Dad may be coming home
        > Thurs...need help! =)
        > >
        > >
        > > My dad (61yo) just had an ileostomy put in last Thurs. This was
        > his
        > > third major abdominal surgery since Sept. The first was to
        > remove a
        > > cancerous tumor. Second to remove a huge infection 'sac'. This
        > one
        > > was to remove what we thought was a little scar tissue and
        > turned out
        > > to be a LOT...so much he ended up needing the ileostomy. This is
        > > where we are today...
        > >
        > > 1/30/07 - surgeon suggests Dad coming home tomorrow and Mom
        > panics!!
        > > They were supposed to send in an ostomy nurse for
        > training...they
        > > haven't. Dad is cleared for soft foods, but still isn't really
        > eating
        > > ANYTHING (either too tired when food comes or it's something he
        > > hates, etc). He still can't walk at all. He shuffled (with the
        > walker
        > > and the PT) to the bathroom, but that's it. He has a big (not
        > open,
        > > thankfully!) painful sore on his tailbone. His incision was left
        > > open, and is still oozing pretty good. Mom is not ready for him
        > to
        > > come home. He is ready mentally, but NOT physically.
        > >
        > > Mom managed to convince the dr to wait until at least Thurs
        > before
        > > shipping them home (which disappointed Dad greatly...once he
        > heard
        > > that the doc was willing to let him go tomorrow that is what he
        > > wanted to do!). *I* managed to convince Dad to give me at least
        > until
        > > Thurs afternoon to try and get things set up and arranged to
        > give
        > > both him and Mom as much help as possible once they get home....
        > > HELP!!!! lol
        > >
        > > I need to know what kinds of things to get...a shower seat is a
        > > given. We really needed one last time he was home. Once we can
        > get
        > > him to eating and walking at least a little, he should get
        > stronger
        > > and stronger at an ever-increasing rate, so shouldn't need a
        > WHOLE
        > > lot of help for a very long time, but the next 2-4 wks he's
        > going to
        > > need a lot. What else besides a shower seat should I have ready?
        > The
        > > house is not well-arranged (think crowded...9 people in a 2bdr)
        > for a
        > > walker, Mom has been his 'walker'. Is there anything I can get
        > to
        > > help his poor tailbone with the big sore? A donut cushion?
        > Several
        > > pillows to put under him so all BUT the sore is supported by
        > > pillows?? A special cream?
        > >
        > > What do I need to have in the way of ostomy supplies? They've
        > told us
        > > NOTHING so far. Mom's been emptying the bag herself, and
        > managing,
        > > thankfully, because none of the nurses ever check it. None of
        > them
        > > seem to know what to do with it. Where do I get the supplies?
        > (He has
        > > Medicaid...not Medicare...Medicaid) What kinds of things, tips,
        > > tricks, hints, etc do those who've dealt with ostomies know
        > about
        > > that the drs and nurses frequently DON'T know about?? (I've
        > found the
        > > been-there-done-that info is a lot of times more helpful than
        > what
        > > comes from the medical professionals)
        > >
        > > Also...clothing... I don't have any idea how big 'normal' stomas
        > are
        > > supposed to be (do they shrink as time goes by??). Mom says
        > Dad's is
        > > basically covering the whole right side of his abdomen. From
        > below
        > > where his pantline sits to above, so he definently won't be
        > going
        > > back into jeans anytime soon. He's going to have to wear
        > *something*
        > > though. Right now we're thinking maybe take a pair of sweat
        > pants,
        > > take the elastic out of the waistband and then 'hang' them on
        > him
        > > using suspenders. Any other ideas??
        > >
        > > Another thing Mom wonders/worries about... the pics we've seen
        > online
        > > all show stomas that are red or pink...healthy looking. She says
        > > there is one small area of red on Dad's and the rest is black.
        > What
        > > does this mean? Is it normal right after surgery??
        > >
        > > What kinds of things can he absolutely NOT eat? What *should* he
        > > absolutely eat/drink (I know lots of fluids, pref. water,
        > anything
        > > else)?
        > >
        > > How often do we need to change the adhesive and bag itself
        > (instead
        > > of just empty)?
        > >
        > > (asking Mom on phone now for other ??s...)
        > >
        > > Any recommendations on good brands?
        > >
        > > Preferences between 'mesh-looking something' or 'beeswax-
        > looking'
        > > something? (She thinks it is the adhesive part...she doesn't
        > know for
        > > sure) If you have a preference, why is that preferred?
        > >
        > > How do you keep the skin from getting irritated if no air is
        > getting
        > > to it and you are changing the adhesive only every 2-3 days?
        > >
        > > Do you recommend a deodorizer? What kind? How do you use it?
        > >
        > > She says "I know NOTHING, except that since no one has done
        > anything
        > > with it or even looked at it since Sun. morning, I've managed to
        > get
        > > it emptied and haven't made a mess or split a drop the last
        > couple of
        > > times. Otherwise...HELP!!!"
        > >
        > > We'd thought we had until this weekend, maybe first part of next
        > week
        > > to get all this sorted out...and were kinda waiting on the
        > ostomy
        > > nurse to come in to help get us started before figuring much
        > out.
        > > That all changed tonight when the surgeon suggested him coming
        > home
        > > tomorrow. Especially since we still haven't seen that nurse! Now
        > I'm
        > > in rush mode. I need to get Mom prepared mentally (and that
        > means
        > > training, house supplied, help arranged, etc) and Dad prepared
        > > physically for a very possible Thursday homecoming.
        > >
        > > ANY help is greatly appreciated!
        > >
        > > Thanks,
        > > Chris in TX
        > >
        > >
        > >
        > >
        > >
        > > __________ NOD32 1863 (20061113) Information __________
        > >
        > > This message was checked by NOD32 antivirus system.
        > > http://www.eset.com
        > >
        > >
        > > [Non-text portions of this message have been removed]
        > >
        >
        >
        >
        >
        > The Ileostomy Group is part of Crohn's Zone IBD Network at
        www.crohnszone.org
        >
        > |Ostomy Forum:
        http://www.crohnszone.org/index.php?name=PNphpBB2&file=viewforum&f=4
        >
        > |Ostomy Chat: http://www.bowelweb.com/chat.html
        > Yahoo! Groups Links
        >
        >
        >
        >






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      • countrygramma05
        I haven t been feeling well this week so I just got around to reading this thread. Chris, it sounds as if your dad is being treated like a number, not a human
        Message 3 of 3 , Feb 2, 2007
          I haven't been feeling well this week so I just got around to reading
          this thread. Chris, it sounds as if your dad is being treated like a
          number, not a human being.

          The first time I had ostomy surgery the ostomy nurse was in within 3
          days to show me how to change it etc. She also gave me a bunch of
          pamphlets to read that explained the whole procedure, some product
          samples and lots of encouragement.

          The Health Group that you mentioned sounds very similiar to what we
          have here in Ontario. It's called Community Care Access Center
          (CCAC) and offers just about any kind of help and support you might
          need. Everytime I have been in the hospital, the social worker
          there
          has made all of the arrangements for me so that when I get home, all
          my husband has to do is call CCAC and everything just falls into
          place. This is really great for us because I have to go to Ottawa
          for my surgeries and that is a trip of 125 miles. Just knowing that
          someone is doing all the work for us instead of loading it onto my
          poor husband is a big relief and one less thing to worry about.

          The last two times I have been in, I was getting IV
          through a portable pump. Within a couple of hours of the time I get
          home, the nurse was here to set up the IV for me. I'm still a client
          so when I needed some physio, I just called my case manager and she
          set it up. When I started having problems with ulcers and skin
          breakdown, I called and there was a nurse here the next day.

          After my first surgery, I had a nurse and Red Cross homemaker both
          coming in regularly. CCAC also sent in an ostomy nurse to make sure
          I knew what I was doing and a dietician to help me with my diet.
          There were some days it was like Grand Central Station around here
          but I was so happy to get all the help. The best part is that
          nothing has ever cost me a penny.

          Pat


          --- In ileostomy@yahoogroups.com, Susan Koprucki <ma2mje@...> wrote:
          >
          > Chris, sounds like you are getting closer to a good path.... KEEP
          PUSHING! I would make them check the chart again, this is crazy.
          > sue
          >
          > Chris Casey <wmcasey@...> wrote:
          Thanks, Mom feels the same way. She was told someone would come in
          before
          > discharge. She was told this back Friday morning (he got out of
          surgery
          > about 7pm Thurs. night), and she's asked every day. The orders keep
          > 'disappearing'. I followed the dr out last night and checked at
          the nurses
          > station. He had just RE-ordered one. I know because I saw the order
          > physically with my eyes on his chart. Today? Our awesome nurse
          (really the
          > best we've had! =) said there was nothing in there...it's gone.
          HOW does an
          > inked order disappear???? GRRR
          >
          > She's been told squat, but I did manage to find a lot of good info
          for her
          > online last night. Also talked to Home Health today and that gal
          really
          > knows her stuff. Said they could definently show her and teach
          her. She was
          > appalled at how the hospital has been handling it and assured me
          that if I
          > could get the orders over to them (they have to have them or they
          can't do
          > anything), they'd take care of the rest...teaching her, ordering
          his
          > supplies, wound care, flushing his PICC line, arranging for bed,
          walker,
          > etc. They do all that. Physical therapy, even, which couldn't hurt.
          >
          > Mom's still trying to get somebody...ANYBODY...to come show her
          something,
          > but has come to the conclusion that it is most likely an effort in
          futility.
          > She sounded VERY relieved to hear about the Home Health gal and
          all that.
          > I'm so glad! I was worried she wouldn't let us get in a
          nurse...then what?!
          > lol
          >
          > Thanks for the link, I'll definently be checking it out! =)
          > Chris
          >
          > ----- Original Message -----
          > From: "carlene" <softailcg3@...>
          > To: <ileostomy@yahoogroups.com>
          > Sent: Wednesday, January 31, 2007 1:29 PM
          > Subject: [The Ileostomy Group] Re: New...Dad may be coming home
          Thurs...need
          > help! =)
          >
          > > ---you have to have a stoma nurse look at your dad before he
          leaves
          > > the hospital. I would not take him no where until this happens!!
          > > PLEASE! i've had my stoma since nov. 2006. there no way some one
          can
          > > come home without someone telling them how to take care of it.
          red
          > > is the healthly color for a stoma, not black.the wafer (part on
          the
          > > skin can be cahanged about ev. 3 dys) bag everyday if you want at
          > > least ev. 2 days. can't believe they are doing this!! it will
          shrink
          > > in a couple of wks. go to this web site theres great people there
          > > that can describe everything really well it a great support group
          > > also. please go there (crohns zone.u.k.org.) think thats it if
          not
          > > just crohns zone and click on first link. GOOD LUCK!! In
          > > ileostomy@yahoogroups.com, "Tim & Michelle" <coyote@> wrote:
          > > >
          > > > Chris,
          > > >
          > > > First things first. You HAVE to be seen by an ostomy nurse.
          > > Demand that to occur before discharge. You can't go home and be
          > > expected to care for something that you have no experience
          with. In
          > > my experience, most of your questions will be answered after you
          see
          > > the ostomy nurse.
          > > >
          > > > And make sure that you are seeing a true ostomy nurse, and not
          an
          > > RN on the floor at the time who may have some ostomy
          experience. If
          > > you are in a larger hospital, there should be an ostomy nurse on
          > > staff.
          > > >
          > > > The only other advice I can give you is make sure he chews his
          > > food extremely well. It needs to be mashed by his teeth before
          it
          > > heads south or else you will end up with blockages. No popcorn,
          raw
          > > veggies, or peanuts until he is healed up, and then after only
          tiny
          > > tiny amounts, chewed well, to see how he handles them. He'll
          only
          > > be eating soft foods for a week or so before the Doc will clear
          him
          > > for anything substantial.
          > > >
          > > > Check in to some home health care (visiting nurses) if they are
          > > covered by the insurance. They can check vitals, observe the
          stoma,
          > > and answer any questions that pop up afterward.
          > > >
          > > > You can always ask questions here too.
          > > >
          > > > Good Luck.
          > > > Tim
          > > >
          > > > ----- Original Message -----
          > > > From: ohec2002
          > > > To: ileostomy@yahoogroups.com
          > > > Sent: Tuesday, January 30, 2007 8:43 PM
          > > > Subject: [The Ileostomy Group] New...Dad may be coming home
          > > Thurs...need help! =)
          > > >
          > > >
          > > > My dad (61yo) just had an ileostomy put in last Thurs. This
          was
          > > his
          > > > third major abdominal surgery since Sept. The first was to
          > > remove a
          > > > cancerous tumor. Second to remove a huge infection 'sac'.
          This
          > > one
          > > > was to remove what we thought was a little scar tissue and
          > > turned out
          > > > to be a LOT...so much he ended up needing the ileostomy.
          This is
          > > > where we are today...
          > > >
          > > > 1/30/07 - surgeon suggests Dad coming home tomorrow and Mom
          > > panics!!
          > > > They were supposed to send in an ostomy nurse for
          > > training...they
          > > > haven't. Dad is cleared for soft foods, but still isn't
          really
          > > eating
          > > > ANYTHING (either too tired when food comes or it's something
          he
          > > > hates, etc). He still can't walk at all. He shuffled (with
          the
          > > walker
          > > > and the PT) to the bathroom, but that's it. He has a big (not
          > > open,
          > > > thankfully!) painful sore on his tailbone. His incision was
          left
          > > > open, and is still oozing pretty good. Mom is not ready for
          him
          > > to
          > > > come home. He is ready mentally, but NOT physically.
          > > >
          > > > Mom managed to convince the dr to wait until at least Thurs
          > > before
          > > > shipping them home (which disappointed Dad greatly...once he
          > > heard
          > > > that the doc was willing to let him go tomorrow that is what
          he
          > > > wanted to do!). *I* managed to convince Dad to give me at
          least
          > > until
          > > > Thurs afternoon to try and get things set up and arranged to
          > > give
          > > > both him and Mom as much help as possible once they get
          home....
          > > > HELP!!!! lol
          > > >
          > > > I need to know what kinds of things to get...a shower seat
          is a
          > > > given. We really needed one last time he was home. Once we
          can
          > > get
          > > > him to eating and walking at least a little, he should get
          > > stronger
          > > > and stronger at an ever-increasing rate, so shouldn't need a
          > > WHOLE
          > > > lot of help for a very long time, but the next 2-4 wks he's
          > > going to
          > > > need a lot. What else besides a shower seat should I have
          ready?
          > > The
          > > > house is not well-arranged (think crowded...9 people in a
          2bdr)
          > > for a
          > > > walker, Mom has been his 'walker'. Is there anything I can
          get
          > > to
          > > > help his poor tailbone with the big sore? A donut cushion?
          > > Several
          > > > pillows to put under him so all BUT the sore is supported by
          > > > pillows?? A special cream?
          > > >
          > > > What do I need to have in the way of ostomy supplies? They've
          > > told us
          > > > NOTHING so far. Mom's been emptying the bag herself, and
          > > managing,
          > > > thankfully, because none of the nurses ever check it. None of
          > > them
          > > > seem to know what to do with it. Where do I get the supplies?
          > > (He has
          > > > Medicaid...not Medicare...Medicaid) What kinds of things,
          tips,
          > > > tricks, hints, etc do those who've dealt with ostomies know
          > > about
          > > > that the drs and nurses frequently DON'T know about?? (I've
          > > found the
          > > > been-there-done-that info is a lot of times more helpful than
          > > what
          > > > comes from the medical professionals)
          > > >
          > > > Also...clothing... I don't have any idea how big 'normal'
          stomas
          > > are
          > > > supposed to be (do they shrink as time goes by??). Mom says
          > > Dad's is
          > > > basically covering the whole right side of his abdomen. From
          > > below
          > > > where his pantline sits to above, so he definently won't be
          > > going
          > > > back into jeans anytime soon. He's going to have to wear
          > > *something*
          > > > though. Right now we're thinking maybe take a pair of sweat
          > > pants,
          > > > take the elastic out of the waistband and then 'hang' them on
          > > him
          > > > using suspenders. Any other ideas??
          > > >
          > > > Another thing Mom wonders/worries about... the pics we've
          seen
          > > online
          > > > all show stomas that are red or pink...healthy looking. She
          says
          > > > there is one small area of red on Dad's and the rest is
          black.
          > > What
          > > > does this mean? Is it normal right after surgery??
          > > >
          > > > What kinds of things can he absolutely NOT eat? What
          *should* he
          > > > absolutely eat/drink (I know lots of fluids, pref. water,
          > > anything
          > > > else)?
          > > >
          > > > How often do we need to change the adhesive and bag itself
          > > (instead
          > > > of just empty)?
          > > >
          > > > (asking Mom on phone now for other ??s...)
          > > >
          > > > Any recommendations on good brands?
          > > >
          > > > Preferences between 'mesh-looking something' or 'beeswax-
          > > looking'
          > > > something? (She thinks it is the adhesive part...she doesn't
          > > know for
          > > > sure) If you have a preference, why is that preferred?
          > > >
          > > > How do you keep the skin from getting irritated if no air is
          > > getting
          > > > to it and you are changing the adhesive only every 2-3 days?
          > > >
          > > > Do you recommend a deodorizer? What kind? How do you use it?
          > > >
          > > > She says "I know NOTHING, except that since no one has done
          > > anything
          > > > with it or even looked at it since Sun. morning, I've
          managed to
          > > get
          > > > it emptied and haven't made a mess or split a drop the last
          > > couple of
          > > > times. Otherwise...HELP!!!"
          > > >
          > > > We'd thought we had until this weekend, maybe first part of
          next
          > > week
          > > > to get all this sorted out...and were kinda waiting on the
          > > ostomy
          > > > nurse to come in to help get us started before figuring much
          > > out.
          > > > That all changed tonight when the surgeon suggested him
          coming
          > > home
          > > > tomorrow. Especially since we still haven't seen that nurse!
          Now
          > > I'm
          > > > in rush mode. I need to get Mom prepared mentally (and that
          > > means
          > > > training, house supplied, help arranged, etc) and Dad
          prepared
          > > > physically for a very possible Thursday homecoming.
          > > >
          > > > ANY help is greatly appreciated!
          > > >
          > > > Thanks,
          > > > Chris in TX
          > > >
          > > >
          > > >
          > > >
          > > >
          > > > __________ NOD32 1863 (20061113) Information __________
          > > >
          > > > This message was checked by NOD32 antivirus system.
          > > > http://www.eset.com
          > > >
          > > >
          > > > [Non-text portions of this message have been removed]
          > > >
          > >
          > >
          > >
          > >
          > > The Ileostomy Group is part of Crohn's Zone IBD Network at
          > www.crohnszone.org
          > >
          > > |Ostomy Forum:
          > http://www.crohnszone.org/index.php?
          name=PNphpBB2&file=viewforum&f=4
          > >
          > > |Ostomy Chat: http://www.bowelweb.com/chat.html
          > > Yahoo! Groups Links
          > >
          > >
          > >
          > >
          >
          >
          >
          >
          >
          >
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