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Colostomy bag

GinaK119GinaK119 member
in Preemies
Anyone else baby come home with one? My twins are 32 weekers, twin A got NEC at 11 weeks old. She came home with a colostomy bag. She's now 9 months old and will have her reversal in a few weeks. Her twin is crawling everywhere and pulling herself up, my twin who had NEC can sit up but no crawling or even rolling over..that bag is just too big and in her way, physical therapy said it would be best to wait to start until after the bag is off because she would just be like starting over again after surgery. I'm hoping after this bag gets off she will be able to move better...just looking for any positive stories of anyone else that was in this situation. Thanks!
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Re: Colostomy bag

  • gutsymamagutsymama member
    Dirty lurker here --

    We're not in exactly the same situation because my son had his jejunostomy takedown at 3.5 months old and he was still in the NICU at that point, but we came home with a g-button and Broviac and he'd had multiple major abdominal surgeries and just didn't want to spend any time on his belly, so we had similar issues. He didn't even sit unsupported until he was 8 months because his core was so weak from being sliced open, and he was able to roll but would only use it to go from belly to back because he didn't want to be on his belly.  

    He is now 13 months and just started crawling in the last month - and once he started, he started zooming! He is thrilled to be able to move around on his own at last, and it's pretty wonderful to see the pure joy on his face when he's in motion. We've been doing PT since January and it's really helped. 

    I don't know if you're looking for suggestions; if you're doing PT they've probably got you pretty well covered. I would just encourage as much weightbearing on the arms as possible, in whatever position that works for her. We did a lot of sitting up and leaning forward to put weight on the arms without actually lying on his belly. We also had a lot of success with reaching across the body with the opposite hand while sitting up because that encourages a transition onto hands and knees, although I could imagine the twisting motion might make the ostomy wafers start to peel up? 

    Anyway, don't get discouraged! It's hard enough to learn all these things, and when you throw in extra obstacles it can just take more time. She'll get there! She's got plenty of time to catch up, and it will be so much easier without the extra ostomy baggage. 

    Congrats on the reversal, by the way! It was a glorious day, when we got rid of our ostomy, and we weren't even at home with it. That thing was the bane of my existence....
    FKA mimi4347: diaper rash magician and unofficial expert on excrement
    photo fdcd1f14-730b-4ea3-9fd5-37c8a5575512_zps6b3ccb11.jpgphoto a71807cf-a0c7-4c71-807b-bc4577b61b83_zps4eece2a6.jpg
    This kid may not have a lot of bowel, but he has plenty of guts! 
    DS born at 34 weeks with (surprise!) gastroschisis turned short bowel syndrome.
    131 days in the NICU, 7 trips to the OR, G-button, daily TPN....
    We are impatiently awaiting the day we can say goodbye to his girlfriend Ivy for good.
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  • XathXath member
    I don't have experience with the colostomy bag, but wanted to let you know my oldest (who was full term) never crawled, and didn't learn to sit up/stand up on his own.  He didn't walk until 15 months when we were doing OT.  But after a year of OT, he's completely caught up and you'd never know.  So don't worry.  I'm sure once the physical impediment is out of the way, your baby will catch up before you know it.
    Lilypie - Personal picture Lilypie - Personal picture Lilypie - Personal picture 
     DS1 - 7/2011, DD 12/2012, DS2 - 4/2014, MMC - 12/2015
    Lilypie Pregnancy tickers
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