Ostomy bags with infants

[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.
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<br />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.
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<br />Also they said it never failed that I would poop like right after they changed it...
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<br />and they also said how funny it was when I farted b/c it would just blow up haha.
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<br />I didnt get corrected until 7 months, and I am pretty sure it got really bad when I tried to crawl around.
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<br />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.
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<br />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.

 

[CJPsMom]

7 months??? My goodness, I feel sorry for your parents - I can't imagine having to do this for the next 7 months!

I have a very vivid mental image of the garbage bags...my husband has mentioned duct tape, which would probably work well with the garbage bags! <img src="i/expressions/face-icon-small-smile.gif" border="0">

We're now getting close to 24 hours with this one...thanks to the "crusting" technique! Am more than happy to change it every evening...just hoping to avoid those 3 in the morning bag changes!

 

[CJPsMom]

7 months??? My goodness, I feel sorry for your parents - I can't imagine having to do this for the next 7 months!

I have a very vivid mental image of the garbage bags...my husband has mentioned duct tape, which would probably work well with the garbage bags! <img src="i/expressions/face-icon-small-smile.gif" border="0">

We're now getting close to 24 hours with this one...thanks to the "crusting" technique! Am more than happy to change it every evening...just hoping to avoid those 3 in the morning bag changes!

 

[CJPsMom]

7 months??? My goodness, I feel sorry for your parents - I can't imagine having to do this for the next 7 months!
<br />
<br />I have a very vivid mental image of the garbage bags...my husband has mentioned duct tape, which would probably work well with the garbage bags! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />We're now getting close to 24 hours with this one...thanks to the "crusting" technique! Am more than happy to change it every evening...just hoping to avoid those 3 in the morning bag changes!
<br />

 

[ajb900]

Our daughter had meconium ileus at birth as well. Had surgery when she was 4 days old and was in the NICU for 28 days (almost exactly your same scenario)! We had an ostomy at home for 2 months after that before they reversed it. We used hollister infant bags and wafers. We used a liquid adhesive called mastisol. But you make sure the skin is clean and dry. Put the glue around the stoma (about the size of the wafer), then place the wafer (we also glued the bag to the wafer before we applied it to her body). Then once all was applied we would hold our hand over it for the heat to help adhere everything. The biggest thing that really helped us get more time out of a bag was applying tegaderm (cut in half) and attached all around the wafer. Tegaderm is made by 3M. The same company that makes the glue makes something to take it off. In the beginning we were able to keep one of for about a day. But our daughters stoma became prolapsed which made the application process more difficult and we really only got about 12 hours out of a bag and much less than that towards the end. When I say that I am so sorry you are going through this, I really mean it. It is so wrong for babies to be put through this and for parents to have to worry with it. I hope my methods helps and when I get home I will look at what that glue was called and message you.

 

[ajb900]

Our daughter had meconium ileus at birth as well. Had surgery when she was 4 days old and was in the NICU for 28 days (almost exactly your same scenario)! We had an ostomy at home for 2 months after that before they reversed it. We used hollister infant bags and wafers. We used a liquid adhesive called mastisol. But you make sure the skin is clean and dry. Put the glue around the stoma (about the size of the wafer), then place the wafer (we also glued the bag to the wafer before we applied it to her body). Then once all was applied we would hold our hand over it for the heat to help adhere everything. The biggest thing that really helped us get more time out of a bag was applying tegaderm (cut in half) and attached all around the wafer. Tegaderm is made by 3M. The same company that makes the glue makes something to take it off. In the beginning we were able to keep one of for about a day. But our daughters stoma became prolapsed which made the application process more difficult and we really only got about 12 hours out of a bag and much less than that towards the end. When I say that I am so sorry you are going through this, I really mean it. It is so wrong for babies to be put through this and for parents to have to worry with it. I hope my methods helps and when I get home I will look at what that glue was called and message you.

 

[ajb900]

Our daughter had meconium ileus at birth as well. Had surgery when she was 4 days old and was in the NICU for 28 days (almost exactly your same scenario)! We had an ostomy at home for 2 months after that before they reversed it. We used hollister infant bags and wafers. We used a liquid adhesive called mastisol. But you make sure the skin is clean and dry. Put the glue around the stoma (about the size of the wafer), then place the wafer (we also glued the bag to the wafer before we applied it to her body). Then once all was applied we would hold our hand over it for the heat to help adhere everything. The biggest thing that really helped us get more time out of a bag was applying tegaderm (cut in half) and attached all around the wafer. Tegaderm is made by 3M. The same company that makes the glue makes something to take it off. In the beginning we were able to keep one of for about a day. But our daughters stoma became prolapsed which made the application process more difficult and we really only got about 12 hours out of a bag and much less than that towards the end. When I say that I am so sorry you are going through this, I really mean it. It is so wrong for babies to be put through this and for parents to have to worry with it. I hope my methods helps and when I get home I will look at what that glue was called and message you.

 

[fourkidsmom]

Hi and Welcome! My son had the ostomy bag for 2 months but was in the hospital the whole time he had it. He spent the first 77 days in the hospital before coming home - he had a 4 hour surgery when he was 6 hours old. We knew he had CF when I was 7 months pregnant and knew about the bowel blockage which ended up being burst at that time. We then transferred to a hospital 2 hrs from home. We did care for the bag in the hospital but never really had problems with it sticking, etc., as long as we were changing often. Good luck with that We reconnected after the two months due to failure to thrive. He to this day can't eat popcorn, corn or peanuts due to getting bowel obstructions so keep that in mind. My son also has been on miralax and lactulose twice daily most of his life. He is now 9 yrs old. If you have any questions feel free to email me.

Angie

 

[fourkidsmom]

Hi and Welcome! My son had the ostomy bag for 2 months but was in the hospital the whole time he had it. He spent the first 77 days in the hospital before coming home - he had a 4 hour surgery when he was 6 hours old. We knew he had CF when I was 7 months pregnant and knew about the bowel blockage which ended up being burst at that time. We then transferred to a hospital 2 hrs from home. We did care for the bag in the hospital but never really had problems with it sticking, etc., as long as we were changing often. Good luck with that We reconnected after the two months due to failure to thrive. He to this day can't eat popcorn, corn or peanuts due to getting bowel obstructions so keep that in mind. My son also has been on miralax and lactulose twice daily most of his life. He is now 9 yrs old. If you have any questions feel free to email me.

Angie

 

[fourkidsmom]

Hi and Welcome! My son had the ostomy bag for 2 months but was in the hospital the whole time he had it. He spent the first 77 days in the hospital before coming home - he had a 4 hour surgery when he was 6 hours old. We knew he had CF when I was 7 months pregnant and knew about the bowel blockage which ended up being burst at that time. We then transferred to a hospital 2 hrs from home. We did care for the bag in the hospital but never really had problems with it sticking, etc., as long as we were changing often. Good luck with that We reconnected after the two months due to failure to thrive. He to this day can't eat popcorn, corn or peanuts due to getting bowel obstructions so keep that in mind. My son also has been on miralax and lactulose twice daily most of his life. He is now 9 yrs old. If you have any questions feel free to email me.
<br />
<br />Angie

 

[CJPsMom]

Thanks to everyone for the pointers! So far, we've had some luck with the "crusting" technique - we got almost 36 hours out of the last bag. Of course, it blew very early this morning and it was a less than ideal time for us & Collin, so I'm not sure how long this one will last.

We're at 6 weeks with the bag, but that seems to be secondary the last few days as he's suffering from very severe acid reflux. He's on ranitidine for it, but it doesn't seem to be helping much. He eats about 2 ounces, then starts crying, arching his back and so forth. Poor baby.

We have an appointment with the pediatric surgeon & the CF clinic on Monday, so hopefully we'll be able to get him some relief. And some relief for us because his pain in eating is causing him to eat less, which makes us worry about the weight gain. *sigh*

Thanks too for the welcomes. Although I don't wish this on anyone, it is comforting to know that others do know what you're going through and can offer advice or just be there to listen!

 

[CJPsMom]

Thanks to everyone for the pointers! So far, we've had some luck with the "crusting" technique - we got almost 36 hours out of the last bag. Of course, it blew very early this morning and it was a less than ideal time for us & Collin, so I'm not sure how long this one will last.

We're at 6 weeks with the bag, but that seems to be secondary the last few days as he's suffering from very severe acid reflux. He's on ranitidine for it, but it doesn't seem to be helping much. He eats about 2 ounces, then starts crying, arching his back and so forth. Poor baby.

We have an appointment with the pediatric surgeon & the CF clinic on Monday, so hopefully we'll be able to get him some relief. And some relief for us because his pain in eating is causing him to eat less, which makes us worry about the weight gain. *sigh*

Thanks too for the welcomes. Although I don't wish this on anyone, it is comforting to know that others do know what you're going through and can offer advice or just be there to listen!

 

[CJPsMom]

Thanks to everyone for the pointers! So far, we've had some luck with the "crusting" technique - we got almost 36 hours out of the last bag. Of course, it blew very early this morning and it was a less than ideal time for us & Collin, so I'm not sure how long this one will last.
<br />
<br />We're at 6 weeks with the bag, but that seems to be secondary the last few days as he's suffering from very severe acid reflux. He's on ranitidine for it, but it doesn't seem to be helping much. He eats about 2 ounces, then starts crying, arching his back and so forth. Poor baby.
<br />
<br />We have an appointment with the pediatric surgeon & the CF clinic on Monday, so hopefully we'll be able to get him some relief. And some relief for us because his pain in eating is causing him to eat less, which makes us worry about the weight gain. *sigh*
<br />
<br />Thanks too for the welcomes. Although I don't wish this on anyone, it is comforting to know that others do know what you're going through and can offer advice or just be there to listen!

 

[scheesman]

Hello & welcome, sorry you have to be part of this forum but i dont know where we would be without it. Lots of great advice and help on here.
My daughter had same thing. She spent 4 months in NICU. She had a bag while in but we did all the care for her as my wife is a nurse. Be more than welcome to give us a call, i think she could help out. 910-297-1878 we are here 24/7 for anything. We know how hard it is and how discouraging this stuff is.
Lily was vomiting upwards of 12 time a day. We had no clue of what was going on. Just remember you are not alone in this battle. This is one big family almost anyone on here will do anything for each other.

 

[scheesman]

Hello & welcome, sorry you have to be part of this forum but i dont know where we would be without it. Lots of great advice and help on here.
My daughter had same thing. She spent 4 months in NICU. She had a bag while in but we did all the care for her as my wife is a nurse. Be more than welcome to give us a call, i think she could help out. 910-297-1878 we are here 24/7 for anything. We know how hard it is and how discouraging this stuff is.
Lily was vomiting upwards of 12 time a day. We had no clue of what was going on. Just remember you are not alone in this battle. This is one big family almost anyone on here will do anything for each other.

 

[scheesman]

Hello & welcome, sorry you have to be part of this forum but i dont know where we would be without it. Lots of great advice and help on here.
<br />My daughter had same thing. She spent 4 months in NICU. She had a bag while in but we did all the care for her as my wife is a nurse. Be more than welcome to give us a call, i think she could help out. 910-297-1878 we are here 24/7 for anything. We know how hard it is and how discouraging this stuff is.
<br />Lily was vomiting upwards of 12 time a day. We had no clue of what was going on. Just remember you are not alone in this battle. This is one big family almost anyone on here will do anything for each other.