Back home with illeostomy.

theresa8

After 4 days in the hospital my husband is back home. His surgery went very well with no surprises. He's not feeling that great, still weak from surgery and trying to cope with his illeostomy. This is really the big issue for him since he only found out he would have a temporary one a few days before his surgery. Yesterday in the hospital, nursing students were the ones chosen to teach him and change his first appliance. It turned out to be a complete disaster since none of them had ever seen this kind of illeostomy since it has a small plastic bridge to prevent the stoma from going back in. Their teacher took over but the bad had been done. Insecurity and panic was written all over his face. Today a stoma nurse took over to teach him how to go about it. He was more positive but got nauseous at he end of the procedure. Since we are now back home a stoma nurse will drop by tomorrow morning.
One question for those who have an illeostomy, how do you go about taking a shower with it, the nurse told us that he should only shower once a week when he changes his appliance. I really doubt this and would like your ouput on this subject. . He reads your comments and he needs the advice of people who are or who have been there to learn how to live with this on an every day basis. We're getting results on the testing of the lymph nodes removed during the surgery next Tuesday. We're hoping for the best since his primary tumor had completely disapeared due to the neo adjuvant treatment.
I'm hanging in there with a very positive attitude
Theresa

WinneyPooh

I to have a new illeoscopy
Thresa, I to have a new ille, and it had a bridge, my surg, just removed it today and when i went home my bad and burrier failed, i have an appointment with the illeoscopy nurse tomarrow morning and i am prety much at the mercy of a bad fit until then, for the most part my stoma looks a little irriatated and i am a little worried about the area which was left by the bridge,

My out put is almost non stop whether it is liquid or semi solid non digested food, I have not eatten alot but it does not seem to matter.

I had a coloscopy before this and this is temp, while my rectum and colon heal from the resection, they say i will have this about 6 weeks, then they will reverse it.

now as far as showering as long as you don't run water staight on the wafer you should be ok to shower, with my coloscopy i usually showered everyother day and did a towel bath on the others to stay fresh.

you will just have to try what works for him.

hope all goes well, we both will learn to live with this, too.

Live,Laugh, Play
Winney

John23

Ile-ow
Re:
"how do you go about taking a shower with it, the nurse told us
that he should only shower once a week when he changes his appliance. "

Well... If he just got operated on, he still has a major wound that's
still in the healing state, right? Unless you're taping over the gauze,
or using the wound-vac, it's kinda' impossible to shower...

Otherwise, showering with an ileostomy isn't much different showering
without one. You didn't say of it's a one piece appliance, or two piece.
I would suggest using a two-piece appliance if you're not already using
one; It makes life much more pleasant!

And I would strongly suggest using a Hollister Adapt ring, or Eakin seal
between the wafer and skin. It helps keep a tight seal around the stoma!
You want to cut the opening as snug to the stoma as possible, so no
skin shows around the base of the stoma when the wafer is on. That's
more difficult to accomplish when using a one-piece... You put the
Adapt ring on the wafer, and stick the whole thing over the stoma.
Hold it tight to the skin for 4-5 minutes to allow body heat to set
the adhesive, and you should be good to go.

Oh.... By the way.... Do not use soap to wash around the stoma,
only plain ol' hot water and a clean rag. Any soap, or any residue
will keep the appliance from sticking the way it should. Dry with
paper towels, since they don't contain skin softeners, etc...

Back to showering.... Some remove the pouch and shower with just
the wafer on, and some with a one-piece take the entire thing off an shower.

I use a two-piece, with a pouch with a fabric covering. I don't like
showering ala' nekkid (damn thing wants to purge with the warm water,
making a mess), so I use a small baggie with a hole cut in one
side, the same size as the fastener on the wafer. I slip the pouch into
the hole in the sealed bag, and tape the bag to my bod, top and sides.

I can shower away, and dry off, remove the baggie, and have a dry
pouch. Easy 'nuf. If you're using a plastic pouch without a covering,
and regardless of one piece or two, just shower with it on, iffn' you
don't want to take it off. The appliance is designed to keep liquid in,
and it'll keep liquid out just as well.

That nurse really told you once a week? Good grief. Did she tell
you you'll have to spray him with Fabreeze every three days?

It gets easier as you go along. Be happy, it's just a temporary glitch!


John

theresa8

John23 said:

Ile-ow
Re:
"how do you go about taking a shower with it, the nurse told us
that he should only shower once a week when he changes his appliance. "

Well... If he just got operated on, he still has a major wound that's
still in the healing state, right? Unless you're taping over the gauze,
or using the wound-vac, it's kinda' impossible to shower...

Otherwise, showering with an ileostomy isn't much different showering
without one. You didn't say of it's a one piece appliance, or two piece.
I would suggest using a two-piece appliance if you're not already using
one; It makes life much more pleasant!

And I would strongly suggest using a Hollister Adapt ring, or Eakin seal
between the wafer and skin. It helps keep a tight seal around the stoma!
You want to cut the opening as snug to the stoma as possible, so no
skin shows around the base of the stoma when the wafer is on. That's
more difficult to accomplish when using a one-piece... You put the
Adapt ring on the wafer, and stick the whole thing over the stoma.
Hold it tight to the skin for 4-5 minutes to allow body heat to set
the adhesive, and you should be good to go.

Oh.... By the way.... Do not use soap to wash around the stoma,
only plain ol' hot water and a clean rag. Any soap, or any residue
will keep the appliance from sticking the way it should. Dry with
paper towels, since they don't contain skin softeners, etc...

Back to showering.... Some remove the pouch and shower with just
the wafer on, and some with a one-piece take the entire thing off an shower.

I use a two-piece, with a pouch with a fabric covering. I don't like
showering ala' nekkid (damn thing wants to purge with the warm water,
making a mess), so I use a small baggie with a hole cut in one
side, the same size as the fastener on the wafer. I slip the pouch into
the hole in the sealed bag, and tape the bag to my bod, top and sides.

I can shower away, and dry off, remove the baggie, and have a dry
pouch. Easy 'nuf. If you're using a plastic pouch without a covering,
and regardless of one piece or two, just shower with it on, iffn' you
don't want to take it off. The appliance is designed to keep liquid in,
and it'll keep liquid out just as well.

That nurse really told you once a week? Good grief. Did she tell
you you'll have to spray him with Fabreeze every three days?

It gets easier as you go along. Be happy, it's just a temporary glitch!


John

Great tips
Thank you John for your wonderful tips on showering. The baggie tip sounds cool, one of our doctor friend suggested wrapping saran Wrap around his middle. Well I don't know about that.
But maybe he can switch to a plastic bag when he showers which wouldn't be a big deal.
We'll wait until the visit of the stoma nurse tomorrow and see what she says. He does have the two piece outfit by Hollister plus the Adapt ring so I guess he's O.K. there.
Now as far as diet goes he thinks that if he doesn't eat he won't have to empty the darn thing. I still have a few challenges ahead of me as far as that goes. By the way do you use the bag with the velcro closing or the one with the kind of clip closure. I thought the velcro would be much easier to handle especially if he has to empty it a couple of times during the night since he's having problems positioning that big clip in the correct position at the bottom of the bag. Well tonight's his first night home so we'll see how it goes.
Thank you for your help.
Theresa

John23

theresa8 said:

Great tips
Thank you John for your wonderful tips on showering. The baggie tip sounds cool, one of our doctor friend suggested wrapping saran Wrap around his middle. Well I don't know about that.
But maybe he can switch to a plastic bag when he showers which wouldn't be a big deal.
We'll wait until the visit of the stoma nurse tomorrow and see what she says. He does have the two piece outfit by Hollister plus the Adapt ring so I guess he's O.K. there.
Now as far as diet goes he thinks that if he doesn't eat he won't have to empty the darn thing. I still have a few challenges ahead of me as far as that goes. By the way do you use the bag with the velcro closing or the one with the kind of clip closure. I thought the velcro would be much easier to handle especially if he has to empty it a couple of times during the night since he's having problems positioning that big clip in the correct position at the bottom of the bag. Well tonight's his first night home so we'll see how it goes.
Thank you for your help.
Theresa

It'sa stoma time
Hi Theresa !

Re:
"he thinks that if he doesn't eat he won't have to empty the darn thing. "

Not eating, will produce gas like you won't believe. He'll be waking up in the
middle of the night with what'll look like the Hindenberg waiting for a spark.

Ileostomates are different than colostomates; food goes through us quicker!

Water for hydration should be taken at regular intervals, like every hour.
Too much water all at once will go straight through, so water at about
4oz per hour is better than all at once! We dehydrate easily, and very
quickly; You don't want that to happen. The signs will be tiredness,
fatigue, rapid heart rate, irregular heart beat.... You can't wait until you're
thirsty, or urine looks dark, you have to drink water fairly continually.

I try to eat a big breakfast, a very big lunch, and a very small supper
always before 5pm. Nothing but a small snack (apple) after 6pm.

Doing that will allow for a decent night's sleep. Food passes through from
mouth to stoma, in less than four hours, so keep that in mind! In fact, for
most of us, there will be times that we go into a "dumping syndrome", where
we have to empty during, or shortly after eating; It's a pain.

So try to maintain a decent diet, and take in food. Not eating isn't a good
idea at all.

I use the Coloplast Assura two-piece, with the extended wear wafer,
and the Hollister Adapt ring between wafer and skin. I manage to get
an average of two weeks wear from the wafer, and change the pouch
when needed. But wear-time can vary greatly, depending on the type of
stoma and how it was placed.

For a temporary "loop" type, there's the inherent problem of getting a
snug enough fit around the stoma, since there's a double piece of intestine
sticking out, with a gap between the two halves. It's like having two stomas
side-by-side. The "Adapt ring" is good for that, if you can get it to seal
snugly around the stoma well enough. You might want to take the effort to
work your fingers around the inside of the wafer around the stoma, pushing
the ring into the stoma area after the thing's been applied. It can help seal it
better. That area between the stoma and skin is critical, since the acid will
eat away skin quickly.

I do use the Velcro type closure (Coloplast Assura), and find it absolutely
great. I started with the Convetec ones with that clip... and after losing it
in a MacGarbage toilet and not having a spare, I switched to the Velcro.
You -do not- want to have to fish a clip out of a public toilet. Ever.
Trust me.

Especially with kids banging on the door and trying to look under the stall.
It's very disturbing. I still suffer the trauma to this day.

The ostomy is new to him (and you), so take your time. It's only temporary,
so treat your problems as if they're only temporary. The most important
thing, is to not get a sore around the stoma. A sore will weep and keep the
wafer from sticking to the skin.

Just wash with only hot water, dry with a paper towel, don't use any
topical dressings, or cleaners, and use the "ring" as an added preventive.

You'll get through this, I almost promise.

You both, stay well!

John

just4Brooks

John23 said:

It'sa stoma time
Hi Theresa !

Re:
"he thinks that if he doesn't eat he won't have to empty the darn thing. "

Not eating, will produce gas like you won't believe. He'll be waking up in the
middle of the night with what'll look like the Hindenberg waiting for a spark.

Ileostomates are different than colostomates; food goes through us quicker!

Water for hydration should be taken at regular intervals, like every hour.
Too much water all at once will go straight through, so water at about
4oz per hour is better than all at once! We dehydrate easily, and very
quickly; You don't want that to happen. The signs will be tiredness,
fatigue, rapid heart rate, irregular heart beat.... You can't wait until you're
thirsty, or urine looks dark, you have to drink water fairly continually.

I try to eat a big breakfast, a very big lunch, and a very small supper
always before 5pm. Nothing but a small snack (apple) after 6pm.

Doing that will allow for a decent night's sleep. Food passes through from
mouth to stoma, in less than four hours, so keep that in mind! In fact, for
most of us, there will be times that we go into a "dumping syndrome", where
we have to empty during, or shortly after eating; It's a pain.

So try to maintain a decent diet, and take in food. Not eating isn't a good
idea at all.

I use the Coloplast Assura two-piece, with the extended wear wafer,
and the Hollister Adapt ring between wafer and skin. I manage to get
an average of two weeks wear from the wafer, and change the pouch
when needed. But wear-time can vary greatly, depending on the type of
stoma and how it was placed.

For a temporary "loop" type, there's the inherent problem of getting a
snug enough fit around the stoma, since there's a double piece of intestine
sticking out, with a gap between the two halves. It's like having two stomas
side-by-side. The "Adapt ring" is good for that, if you can get it to seal
snugly around the stoma well enough. You might want to take the effort to
work your fingers around the inside of the wafer around the stoma, pushing
the ring into the stoma area after the thing's been applied. It can help seal it
better. That area between the stoma and skin is critical, since the acid will
eat away skin quickly.

I do use the Velcro type closure (Coloplast Assura), and find it absolutely
great. I started with the Convetec ones with that clip... and after losing it
in a MacGarbage toilet and not having a spare, I switched to the Velcro.
You -do not- want to have to fish a clip out of a public toilet. Ever.
Trust me.

Especially with kids banging on the door and trying to look under the stall.
It's very disturbing. I still suffer the trauma to this day.

The ostomy is new to him (and you), so take your time. It's only temporary,
so treat your problems as if they're only temporary. The most important
thing, is to not get a sore around the stoma. A sore will weep and keep the
wafer from sticking to the skin.

Just wash with only hot water, dry with a paper towel, don't use any
topical dressings, or cleaners, and use the "ring" as an added preventive.

You'll get through this, I almost promise.

You both, stay well!

John

John.. He sure know's his Stoma care
I've had my Temp iliostomy for 5 months now. John was a big hep to me with I first got mine and so was Buzzard. They always seem to have the right answers.


Brooks

theresa8

John23 said:

It'sa stoma time
Hi Theresa !

Re:
"he thinks that if he doesn't eat he won't have to empty the darn thing. "

Not eating, will produce gas like you won't believe. He'll be waking up in the
middle of the night with what'll look like the Hindenberg waiting for a spark.

Ileostomates are different than colostomates; food goes through us quicker!

Water for hydration should be taken at regular intervals, like every hour.
Too much water all at once will go straight through, so water at about
4oz per hour is better than all at once! We dehydrate easily, and very
quickly; You don't want that to happen. The signs will be tiredness,
fatigue, rapid heart rate, irregular heart beat.... You can't wait until you're
thirsty, or urine looks dark, you have to drink water fairly continually.

I try to eat a big breakfast, a very big lunch, and a very small supper
always before 5pm. Nothing but a small snack (apple) after 6pm.

Doing that will allow for a decent night's sleep. Food passes through from
mouth to stoma, in less than four hours, so keep that in mind! In fact, for
most of us, there will be times that we go into a "dumping syndrome", where
we have to empty during, or shortly after eating; It's a pain.

So try to maintain a decent diet, and take in food. Not eating isn't a good
idea at all.

I use the Coloplast Assura two-piece, with the extended wear wafer,
and the Hollister Adapt ring between wafer and skin. I manage to get
an average of two weeks wear from the wafer, and change the pouch
when needed. But wear-time can vary greatly, depending on the type of
stoma and how it was placed.

For a temporary "loop" type, there's the inherent problem of getting a
snug enough fit around the stoma, since there's a double piece of intestine
sticking out, with a gap between the two halves. It's like having two stomas
side-by-side. The "Adapt ring" is good for that, if you can get it to seal
snugly around the stoma well enough. You might want to take the effort to
work your fingers around the inside of the wafer around the stoma, pushing
the ring into the stoma area after the thing's been applied. It can help seal it
better. That area between the stoma and skin is critical, since the acid will
eat away skin quickly.

I do use the Velcro type closure (Coloplast Assura), and find it absolutely
great. I started with the Convetec ones with that clip... and after losing it
in a MacGarbage toilet and not having a spare, I switched to the Velcro.
You -do not- want to have to fish a clip out of a public toilet. Ever.
Trust me.

Especially with kids banging on the door and trying to look under the stall.
It's very disturbing. I still suffer the trauma to this day.

The ostomy is new to him (and you), so take your time. It's only temporary,
so treat your problems as if they're only temporary. The most important
thing, is to not get a sore around the stoma. A sore will weep and keep the
wafer from sticking to the skin.

Just wash with only hot water, dry with a paper towel, don't use any
topical dressings, or cleaners, and use the "ring" as an added preventive.

You'll get through this, I almost promise.

You both, stay well!

John

Stoma Master
You really are a stoma master, thank you for all this information. Now, how do you go about showering, as the stoma nurse said this morning, it's still a little early but in a few days we will be experimenting with this. Take care.
Theresa

John23

theresa8 said:

Stoma Master
You really are a stoma master, thank you for all this information. Now, how do you go about showering, as the stoma nurse said this morning, it's still a little early but in a few days we will be experimenting with this. Take care.
Theresa

Showering ?


Does he still have an open surgical wound? If so, showering
will be a problem. You'd have to tape over the gauze, unless
he's using the "wound-vac". And even then, you'd want to be
careful not to flood the area near the wound.

Actually, scroll up and see if what I had typed covers it?
If not, let me know and I'll try my best to offer whatever
suggestions I can.

I hate to be the only one giving you info; how are you going
to know if it's the right info? I make mistrakes too!

I've had an ileo for over three years, and most of what I can
offer is what the manufacturers say to do. A lot of ostomates
experiment, and devise ways to get it better suited to their
own needs, and that's what you should do also. We're all different,
and have stomas that have been formed differently, as well.

I learned the hard way. I developed a sore next to the stoma
while in the hospital. All the things the nurses did, just made it
worse. I was sent home, and the appliance would not stay on
for more than a day at best. They had visiting nurses come in
every other day to check the surgical wound. Each one tried to
"fix" the leaking appliance, and each one made it worse than
before. It got so bad, that the skin weeped and prevented anything
from sticking.

One night at 2am, after trying for three hours, I gave up, wrapped
myself in a towel, and slept in the tub. I can honestly tell you, that I had
wished I had died, rather than have to go through that any longer.

One nurse checked with another patient, and came up with a way
to fix the sore area. She took "Convetec Stomahesive Powder",
dusted the area, brushed off the excess and used a wound-vac
plastic covering on top of the sore area. She had cut a hole in it
for the stoma. She then put the appliance on top of that. It stayed
on, and the sore healed within a day.

After that, I used the procedures of the manufacturers, and not
the nurse's, or anyone else's procedures, and I've been OK since then.

Hopefully, your OM won't have any nasty sores, but if that does
happen, give me a yell, and I'll share what I know.

Good luck with all that.


John

khl8

theresa8 said:

Great tips
Thank you John for your wonderful tips on showering. The baggie tip sounds cool, one of our doctor friend suggested wrapping saran Wrap around his middle. Well I don't know about that.
But maybe he can switch to a plastic bag when he showers which wouldn't be a big deal.
We'll wait until the visit of the stoma nurse tomorrow and see what she says. He does have the two piece outfit by Hollister plus the Adapt ring so I guess he's O.K. there.
Now as far as diet goes he thinks that if he doesn't eat he won't have to empty the darn thing. I still have a few challenges ahead of me as far as that goes. By the way do you use the bag with the velcro closing or the one with the kind of clip closure. I thought the velcro would be much easier to handle especially if he has to empty it a couple of times during the night since he's having problems positioning that big clip in the correct position at the bottom of the bag. Well tonight's his first night home so we'll see how it goes.
Thank you for your help.
Theresa

I had a temp Illeosto,y for
I had a temp Illeosto,y for 7 months, Iused a two piece system and showered everyday and kept the bag on. My bg changes werea bout every 5 to 6 days. I just did not let the water beat down on the bag, but it did get wet. You are supposed to be able to swim with these on.
Kathy
if you dont eat, it makes it worse.
I had the velcro closure bag.
Tell him I too was miserable with it, but I did mangage to accept it and deal with it until they reversed mine.
Hang in there