Ostomy bags with infants

[CJPsMom]

Our son was born with meconium ileus and had to have surgery when he was 2 days old. We spent almost a month in NICU and are home now, but are struggling with the ostomy bag.

Any parents here who have had infants at home on the ostomy bags? If so - any suggestions? We've tried just about everything, different bags, different sizes, lots of paste, no paste, heating the wafer before we attach, warming it after it's attached, and so on and so forth.

We just can't seem to get it to stay on for more than a couple of hours at a time.

Any guidance would be appreciated.

 

[CJPsMom]

Our son was born with meconium ileus and had to have surgery when he was 2 days old. We spent almost a month in NICU and are home now, but are struggling with the ostomy bag.

Any parents here who have had infants at home on the ostomy bags? If so - any suggestions? We've tried just about everything, different bags, different sizes, lots of paste, no paste, heating the wafer before we attach, warming it after it's attached, and so on and so forth.

We just can't seem to get it to stay on for more than a couple of hours at a time.

Any guidance would be appreciated.

 

[CJPsMom]

Our son was born with meconium ileus and had to have surgery when he was 2 days old. We spent almost a month in NICU and are home now, but are struggling with the ostomy bag.
<br />
<br />Any parents here who have had infants at home on the ostomy bags? If so - any suggestions? We've tried just about everything, different bags, different sizes, lots of paste, no paste, heating the wafer before we attach, warming it after it's attached, and so on and so forth.
<br />
<br />We just can't seem to get it to stay on for more than a couple of hours at a time.
<br />
<br />Any guidance would be appreciated.

 

[imagine04]

While i can't offer any guidance with the ostomy bag i just wanted to welcome you to the forums. I am sorry you had to join us here but please know that these boards are so incredibly helpful and supportive. I've found a new extended family that i'm so thankful for. I'm sure one of the parents here will know something about the bags! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

While i can't offer any guidance with the ostomy bag i just wanted to welcome you to the forums. I am sorry you had to join us here but please know that these boards are so incredibly helpful and supportive. I've found a new extended family that i'm so thankful for. I'm sure one of the parents here will know something about the bags! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[imagine04]

While i can't offer any guidance with the ostomy bag i just wanted to welcome you to the forums. I am sorry you had to join us here but please know that these boards are so incredibly helpful and supportive. I've found a new extended family that i'm so thankful for. I'm sure one of the parents here will know something about the bags! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CJPsMom]

Thank you! Fortunately, we found out during pregnancy that CF was a possibility, so we weren't completely blindsided. However, we didn't know about the higher incidence of meconium ileus for CF infants, so the almost month in NICU was quite unexpected.

I've found this forum to be comforting as I've read our story over and over again in the stories of others.

And your Parker is exactly one month older than our Collin! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CJPsMom]

Thank you! Fortunately, we found out during pregnancy that CF was a possibility, so we weren't completely blindsided. However, we didn't know about the higher incidence of meconium ileus for CF infants, so the almost month in NICU was quite unexpected.

I've found this forum to be comforting as I've read our story over and over again in the stories of others.

And your Parker is exactly one month older than our Collin! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[CJPsMom]

Thank you! Fortunately, we found out during pregnancy that CF was a possibility, so we weren't completely blindsided. However, we didn't know about the higher incidence of meconium ileus for CF infants, so the almost month in NICU was quite unexpected.
<br />
<br />I've found this forum to be comforting as I've read our story over and over again in the stories of others.
<br />
<br />And your Parker is exactly one month older than our Collin! <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[LoveForHalsey]

We hade the same thing happen to us and the frustration is unbelievable!!

Have you tried "crusting"? Our surgeon's RN tought us how to do it. There is a powder that you put on then follow with an adhesive pad that you dab on the powder. Repeat 3 times. This allowed us to keep a bag on for 24 hours at a time. I know seems like a short time frame....We tried several different types of bags but found Holister to work the best. We also kept size 5 diapers around and would wrap it around her belly if only 1 of us were home when it began to leak. I can not tell you how many of her sweet premie outfits have this poopoo stain on the right side!! <img src="i/expressions/brokenheart.gif" border="0">
Good luck...I know this is hard. Our ordeal lasted 4 months. Now she is great!!!

 

[LoveForHalsey]

We hade the same thing happen to us and the frustration is unbelievable!!

Have you tried "crusting"? Our surgeon's RN tought us how to do it. There is a powder that you put on then follow with an adhesive pad that you dab on the powder. Repeat 3 times. This allowed us to keep a bag on for 24 hours at a time. I know seems like a short time frame....We tried several different types of bags but found Holister to work the best. We also kept size 5 diapers around and would wrap it around her belly if only 1 of us were home when it began to leak. I can not tell you how many of her sweet premie outfits have this poopoo stain on the right side!! <img src="i/expressions/brokenheart.gif" border="0">
Good luck...I know this is hard. Our ordeal lasted 4 months. Now she is great!!!

 

[LoveForHalsey]

We hade the same thing happen to us and the frustration is unbelievable!!
<br />
<br />Have you tried "crusting"? Our surgeon's RN tought us how to do it. There is a powder that you put on then follow with an adhesive pad that you dab on the powder. Repeat 3 times. This allowed us to keep a bag on for 24 hours at a time. I know seems like a short time frame....We tried several different types of bags but found Holister to work the best. We also kept size 5 diapers around and would wrap it around her belly if only 1 of us were home when it began to leak. I can not tell you how many of her sweet premie outfits have this poopoo stain on the right side!! <img src="i/expressions/brokenheart.gif" border="0">
<br />Good luck...I know this is hard. Our ordeal lasted 4 months. Now she is great!!!
<br />

 

[CJPsMom]

Thanks for the tip! We haven't heard about crusting, but after desperation sent me online looking for suggestions, I saw several people mention using the powder and prep. We tried it on the latest bag application and we're about 13 hours in on this one and it seems to be lasting.

Did you have any problems with the Hollister bags coming apart? We've tried the Hollister drainable pouches but the bag is coming apart from the wafer - so he's got the wafer still stuck to him and the bag in the diaper - truly a nightmare.

Ugh...4 months...I can't imagine. We're meeting with the surgeon next week and are praying that they'll schedule the reattachment.

 

[CJPsMom]

Thanks for the tip! We haven't heard about crusting, but after desperation sent me online looking for suggestions, I saw several people mention using the powder and prep. We tried it on the latest bag application and we're about 13 hours in on this one and it seems to be lasting.

Did you have any problems with the Hollister bags coming apart? We've tried the Hollister drainable pouches but the bag is coming apart from the wafer - so he's got the wafer still stuck to him and the bag in the diaper - truly a nightmare.

Ugh...4 months...I can't imagine. We're meeting with the surgeon next week and are praying that they'll schedule the reattachment.

 

[CJPsMom]

Thanks for the tip! We haven't heard about crusting, but after desperation sent me online looking for suggestions, I saw several people mention using the powder and prep. We tried it on the latest bag application and we're about 13 hours in on this one and it seems to be lasting.
<br />
<br />Did you have any problems with the Hollister bags coming apart? We've tried the Hollister drainable pouches but the bag is coming apart from the wafer - so he's got the wafer still stuck to him and the bag in the diaper - truly a nightmare.
<br />
<br />Ugh...4 months...I can't imagine. We're meeting with the surgeon next week and are praying that they'll schedule the reattachment.
<br />

 

[LoveForHalsey]

The bags we used snapped on like Tupperware. They worked well once we got them to stay on. I am soooo glad you found the crusting and tried it. 13 hours begins to feel like forever after just an hour of success!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">

We had failure to thrive issues and had to get a PICC with 24hour feedings to gain weight on the beginning. She had to be 10 lbs before they would reconnect. It was the best day of our life. I just sat there looking at her dressing (shaped like a heart<img src="i/expressions/face-icon-small-smile.gif" border="0">)and crying. I wish you the best of luck next week!!!!<img src="i/expressions/hugging.gif" border="0">

 

[LoveForHalsey]

The bags we used snapped on like Tupperware. They worked well once we got them to stay on. I am soooo glad you found the crusting and tried it. 13 hours begins to feel like forever after just an hour of success!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">

We had failure to thrive issues and had to get a PICC with 24hour feedings to gain weight on the beginning. She had to be 10 lbs before they would reconnect. It was the best day of our life. I just sat there looking at her dressing (shaped like a heart<img src="i/expressions/face-icon-small-smile.gif" border="0">)and crying. I wish you the best of luck next week!!!!<img src="i/expressions/hugging.gif" border="0">

 

[LoveForHalsey]

The bags we used snapped on like Tupperware. They worked well once we got them to stay on. I am soooo glad you found the crusting and tried it. 13 hours begins to feel like forever after just an hour of success!!!<img src="i/expressions/face-icon-small-happy.gif" border="0">
<br />
<br />We had failure to thrive issues and had to get a PICC with 24hour feedings to gain weight on the beginning. She had to be 10 lbs before they would reconnect. It was the best day of our life. I just sat there looking at her dressing (shaped like a heart<img src="i/expressions/face-icon-small-smile.gif" border="0">)and crying. I wish you the best of luck next week!!!!<img src="i/expressions/hugging.gif" border="0">

 

[theLostMiler]

I am sure things have changed a lot since I was born... My dad I think actually resorted to black garbage bags and he would cut out the shape of the hole every night in a few of them for the next day.

I am pretty sure my parents struggled with keeping it on, they always joke about how b/c it was so greasy it would just slide off.

Also they said it never failed that I would poop like right after they changed it...

and they also said how funny it was when I farted b/c it would just blow up haha.

I didnt get corrected until 7 months, and I am pretty sure it got really bad when I tried to crawl around.

I also remember my mom saying she used tights a lot I think, to keep the bag in place, so I wore lots of dresses and tights. I have a picture though and you cant even tell, but it was when I had the bag.

I will ask again to see exactly what they did, but I am pretty sure it never stayed on 24 hours, let alone 13... so I probably wont be much help.

 

[theLostMiler]

I am sure things have changed a lot since I was born... My dad I think actually resorted to black garbage bags and he would cut out the shape of the hole every night in a few of them for the next day.

I am pretty sure my parents struggled with keeping it on, they always joke about how b/c it was so greasy it would just slide off.

Also they said it never failed that I would poop like right after they changed it...

and they also said how funny it was when I farted b/c it would just blow up haha.

I didnt get corrected until 7 months, and I am pretty sure it got really bad when I tried to crawl around.

I also remember my mom saying she used tights a lot I think, to keep the bag in place, so I wore lots of dresses and tights. I have a picture though and you cant even tell, but it was when I had the bag.

I will ask again to see exactly what they did, but I am pretty sure it never stayed on 24 hours, let alone 13... so I probably wont be much help.