Special Needs
Options
Baby with colostomy?
Hi,
I posted this on 0-6 but thought I would try this board as well. I was wondering if any of you had a child with an ostomy bag? My son was born with a few birth defects (which were were not aware of before birth) and needed to have a colostomy the day after his birth. He is now 3 months old and I was just looking for tips on what kind of clothes are best since his bag has been coming off a lot lately. Any tips would be appreciated.
Thanks!
This discussion has been closed.
Re: Baby with colostomy?
No baby advice, I just wanted to give you hugs.
My mom had her entire colon removed (due to colon cancer) and will probably have to get a bag in the future. My neighbor has severe Crohns and has had a bag for years. Just wanted to let you know that it isn't as unusual as you might think- people all around you probably have them. Will your daughter always have to have a bag, or will they be able to correct her issues?
Thanks for the hugs
He was born with an imperforate anus (anus not connected to intestine), as well as a tethered spinal cord, other vertebral anomolies, two fused ribs, and his kidney's are both on one side and fused. The doctor's have called this VATER association. He will have a pull through surgery in January as long as the tethered cord is taken care of (we find out if he needs surgery on that this week). Once the pull through is done and everything seems to work, his colostomy will be reversed. Hopefully but the time he's a year old, he will be done with all this!
Hi.
My 1st born had a colostomy bag for almost 4 yrs and then had a pull through, but this is back in the 1990's so I am sure bags and supplies are better. what kind of bag are you using? when we 1st started out I had to use this thing that was all one piece and was a pain to deal with, but then we found ones that were like tupperwear, it had two pieces. That was great.
He wore lots and lots of overalls, the band on shorts would mess w/ the bag too much. We still had lots of poppy accidents though, the adhesive would slowly start to come undone and it would ooze. I always had to have at least two sets of back-up clothes and all the needed clean up and supplies every wear I went (plus trash/grocery bags to collect the poopy clothes and throw away the old colosty bag)
If I was going somewhere I knew it I would really be in a pickle if the adhesive side failed I would put a fresh set up on him even if it was not really time to change it. I would just soak him in the tub until I could get the old one off him.
Michael did not get his bag until he was 8months old and had it until he was 4 yrs old, so I have a very active child on my hands wh/ can make having a bag difficult (but of course do-able) I hope you can have the pull through soon. Since he was older when he had his I am might not be the best at knowing what is best to help right now. But I would be on the look out for new products, let technology be your friend.
Once you have the pull through you might find that you have some issues that you did not think you would have to deal with, if you find that to be true please feel free to PM me. heck any questions you have now feel free to PM me.
ohh wow, I have not thought about what it was like to put on a bag in sooo long.. I think I would still know how, but they might have changed. I know that I used the paste and tape to keep the unit in place and that we had the two piece system that was like tupperwear. I also used stoma powered to try and keep the skin around the stoma less irritated. ohh and I kept one (gosh I con't remember the name of the thing) of the peices that is applied around the stoma and on the skin, I would cut one to size and keep it as a templet and I would try and keep a few of them cut inadvance so that way I could put a new on quickly.
best of luck!
Max 4-08-08 and Michael 2-03-91 (19 years olds)
Thanks for the response. We are using a hollister brand bag that sounds like the one you were using. It is just a plastic bag that is stuck to the wafer that adheres to his skin. It usually lasts a few days but now that he is moving more, I feel it is coming off easier. Since we are hoping to have the surgery around 6 months, I think we can get away with the bags we have now but the 2 piece bags do sound much easier. We have been lucky and he skin is doing very well. Just slightly red where the wafer is attached. Hopefully it stays that way!
oh yea, things got much eaiser for me once I started to use the two piece system. I will say I think with the two piece system the waffer (that was what I was thinking above, but could not remember the name of) still only lasted 2 to 3 days. The nice thing was I could put a fresh clean bag on him several times a day, it made me feel like he was cleaner and of course no need to open the bottom of the bag for removal of poop and then reclip, although they still had that option. and when the bag was full of mainly gas (not sure if that is an issue for you) I could just break the seal and let out some air instead of unrolling and unclipping the bottom.
good news that you only have 3 more months of the bag! like I said if you have any question just ask.
Max 4-08-08 and Michael 2-03-91 (19 years olds)
Hi,
my son, who is now almost 6 months, has an ostomy bag. he's had his since day 4 of life. we also use the hollister brand of bags. i honestly haven't changed anything he's worn b/c of his bag. i just dress him how i want to and i haven't had any problems. the bag usually lasts about 2 days but sometimes it starts coming off and i just tape it b/c it's usually just the edges that are coming off. i hope that helps you. one thing he does wear alot are onsies. but i think that that just b/c i have a lot of them and they are easy for him to wear. if you have anymore questions please let me know.
Hi there.
My son had a colostomy until he was 11 months old. We used a lot of onesies and one piece sleepers but, honestly, the bag just started coming off a lot after a while. I think it has something to do with the skin around the stoma getting really soft. Also, Drake started pulling it off himself whether it was covered by clothing or not! Very frustrating! Do you have the duiderm discs that attach to the skin? One of the nurses in the NICU just attached the bag to him without the duiderm one time and that was so hard to get off! (I don't recommend doing that by the way!)
I also wanted to say that my son was born with VACTERL Association which is just like VATER just with more anomalies. His whole story is in my bio including all of his anomalies. It is quite a list!
Let me know if you have any more questions and welcome to the board!
Yes, my son had a colostomy at 4 days old and had his pull-thru at 3 months. Like Sweet Monkey said (my son has the same Dx as her sons, Hirschsprung Disease), you may have some issues or questions after the pull-thru, too, so feel free to contact me and ask away.
I found it very difficult when my son was a newborn because his belly button was still healing, which gave us less surface area to attach the wafer. It was better when we could put the wafer right over his belly button. We tried one and two-piece setups from several different companies and we liked the Hollister best, I think the type was New Image or something similar - it was flexible, like a big band aid, so it moved with him and didn't leak as much as the others. When we were out and it looked like a leak was near, I would pull out the medical tape, which could usually hold it off for an hour or so. The middle-of-the-night leaks were the worst!
But to get back to your question about clothing - onsies, sleepers and overalls were great. Anything that held in the bag in. Waistbands or regular shirts (no snaps) don't work well with the bag. I've also seen elastic bands, like a big stretchy belt, that hold the bags in place so it's hard for kids to pull at them - but I don't have any firsthand experience with those.
Hang in there and good luck!
Thanks for all of your responses. If you don't mind my asking, did you know about your LO's conditions before he/she was born? I feel so naive because I assumed after the big ultrasound that things were fine and I would have a healthy baby. Now I am nervous to have another child. (Not that we are considering doing in the near future) They told me his condition is not genetic and they have never seen it happen twice in the same family, but I am still apprehensive. Did you guy's feel like that?
w/ my 1st one, nope, nothing no clue (and it's rare, so he was not dx until things took a very bad turn)
w/ my 2nd one, nothing showed on the U/S but I did not push the issue. I had it in my records stating I had a child w/ this problem but to be honest I don't think the tech would have known and I don't think it was on the dr's mind. At the time what i read stated that having a 2nd child w/ the same thing was anywhere from 3 to 10 % wh/ means I had at least a 90% of not having the same issue, and my son's have different fathers, and I had heard the line.. have never seen it twice in a family. I had not read that it sometimes can be seen on a U/S until after I had him.
But I totally regert not saying to the tech can we take a another look at the U/S or asking my dr to order a more "fancy" u/s (i don't know what they are called since I never got one) My son's have the more mild (and more common) form, so it might not have been picked up on U/S anyway. BUT if I was to have another child I would DEMAND more and better U/S. so I could have a surgeon in place and ready for surgery asap.
Like I said. I once heard the line.. have not seen it twice in the same family.. but that was yrs ago (my kids are 17 yrs apart) and I heard that from nurses, they have learned so much more about the condition and tx are different.
Their condition is said to mostly be random mutation, but sometimes genetic and in my case it obviously is, but when we did the gene testing the test came out negative for what they were looking for, so as much as they have learned in 17 yrs, they still have alot more to learn. They said that if i do have another child I could check back w/ them to see if they have a new and better test and I could do some more gene testing. I have some sort of mutation in my genes that does not effect me, but I pass it on to my kids. I am not sure if I will ever have another child, but that decision is based mostly on other issues, but the condition does have some effect. Not so much the condition, but I have a fear that as I get older (34 next month) that what if the gene that I am passing down gets even more wonky w/ age? and the future child could have the more difficult form of the condition. As you know the older the mother the higher risk of conginital anomalies, well I know I already have that risk, then to throw older age into the mix, it scares me. I have however never talked to a dr or a geneticist, so I could just be creating unneeded fear and false ideas.
try not to feel guilt or stupid for not catching it before he was born, we go to this U/S trusting in the tech and doctor and for the most part they go a great job. the standard U?S can catch only so much. Like I said sometimes I wish I would have pushed the issues, but I did not.. sometimes I think maybe if I would have paid to do the 3/4D U/S for fun we would have found the issue and be prepared, but ....
what I do feel kinda stupid about is I had worried and worried and worried that Max would have teh same issue and one day I just "Felt" that he was going to be ok, a mother's intuition and I never worried about it a agin, it was like the thought and worry just left me. so when he got sick that 1st day I was devistated. However I can say now that he was "ok" compaired to what my 1st born went through. so maybe I was right after all...
I know my children don't have the same issues that you face and from what I can see it sounds like they will have more than mine, so my story might not help. But I hope that you find peace (although the bad feelings never fully go away) and I hope that if you want another child that you do have another child.
Max 4-08-08 and Michael 2-03-91 (19 years olds)
They have also told me that VATER/VACTERL is not genetic but I can't help but worry about having another baby. With everything we have going on with Drake I think we are done having kids anyway. My husband will be 39 tomorrow and we still have a couple of years of surgeries left for Drake. It's just impossible to think about right now.
Everything was a complete surprise for us, too. During my second ultrasound, however, they were having a problem identifying some of his anatomy but they didn't really think anything of it. I started bleeding a little a couple of weeks later so my doctor took the opportunity to send me for a third ultrasound and still nothing was seen.
We had no idea about my son's disease until he was 2 days old. There were no signs of anything abnormal on the ultrasounds. And he was born seemingly healthly and 9+ pounds. We were even preparing to leave the hospital, when he took a really bad turn. We had never heard of Hirschsprung Disease. And I've never met another person IRL who has it or has a child with it - though this board is awesome. I've also connected with a whole network of people dealing with the disease through Facebook Groups - I highly recommend this.
He is our second child, and we've always planned on only having two - so the issue of another child isn't exactly applicable to us. But if our first was born with this disease, the decision to have a second would have been much harder. We may have looked into adoption. But it's hard to say for sure when you're not in that situation.
Good luck!!