Any mamas/daddys with ostomy kiddos?

[rileykidmama]

Colostomy, ileostomy, urostomy? If your lo has a colostomy, do you wash dipes any differently than "normal" kiddo's dipes? My dd has had a colostomy since 3 days after she was born; she's three years old now. I don't do a cold rinse cycle before the main cycle because there's absolutely no poo to rinse out! Just thought I'd give a shout out and see if there's any response.

[mekat]

Yes, Alec has a colostomy. He had his surgery at 28 days old and still has it. He is 3 years old and will be 4 in August. I actually do a short prerinse to get the most pee out because I just don't feel that detergent will be as effective washing dipes in water full of urine. Also occasionally we get rectal discharge that can smell as badly as poop. We have had the discharge tested for c-diff and a few other things. It is just rectal mucus.

[mekat]

She looks very sweet. Lucky you, her colostomy is much higher then Alec's so doesn't interfere with the dipe as much. I will look and see if I can find a pic of Alec but it will probably be pretty old.

[jaceraden]

No ostomy kiddo here but I wanted to say that your LO is a cutie pie! And, your girlie has made me decide to start putting our "pretty" diapers on my DD without worry that she'll dirty it - I should be focusing more on how lucky I am that she can.

[mekat]

Here is a photo only taken a few months ago...



Here is one taken in a wool wrap showing his ostomy. He was about a year old in this picture. You will have to open the link below to see the other one. Sorry I am no very familiar with this board's image posting.

[rileykidmama]

Ellie's ostomy used to be much lower; she's had a few abdominal surgeries since she was born and as a result it has moved up and to the right a bit. She was also born with imperforate anus, so she has no opening down there at all (no chance for mucus). Heya mekat, Alec is a cutie! I'm glad to finally find someone else on here that has a lo with an ostomy.

[mekat]

Alec has anal stenosis and anal atresia most of these issues stem from how badly his sacral spine is deformed. Theoretically since he is older we could have the ostomy reveresed but I haven't done it for numerous reasons.
So as of right now we think Alec's colostomy is permanent but if his medical status changes we may choose to reverse our decision and proceed with surgery. I know my decision isn't a popular one among ostomy parents but it is personally what I feel is best for Alec.

Was that an adult ostomy bag I spotted? Currently we use Hollister's adult new image 2 piece system and love it. Hollister's is one of the few brands that doesn't rip Alec's skin to shreds.

[Mama2acrew]

No ostomy here either, bu tI too have a sn Riley kiddo. We live in Sullivan... I didn't know there were any CDing mommies within a 100 mile radius of here ROFL!!!
:::waving:::

[katedanzer]

E had a jeujonostomy, but he was reconnected before he came home from the NICU. He only has 1/4 of his bowel due to NEC. He lost all of his ileum and most of his duodenum. So he has a lot of problems w/ absorption and resulting short gut syndrome. His GI didn't want to reconnect him, but it was our only hope of getting of TPN as he just couldn't keep his output within a tolerable level. Had to search to find an old pic to share. E is going to be 2 next week

Eek, sorry it's big. I haven't figured out how to downsize the pic w/o changing the original.

[odentonmom]

No ostomy at this point. However, my DS has gone through many periods where he does not have any bowel movements on his own. He is currently dependent on daily rectal irrigations, but he is passing small amounts of stools. For most of his first year, he would only pass stool with rectal dilations. I didn't switch to CDs until he was 11 months old and I realized all that time I could have been washing poop-free diapers, I could have kicked myself.

An ostomy is an option we will have to consider, if we cannot get DS to have BMs again on his own.

ETA: Since there seem to be some other mamas on here with children with bowel issues, I wanted to post a link to the Hirschsprung's and Motility Disorders Support Network Yahoo group.