Weaning baby with ileostomy

[Toad2016]

Hi
My little terror recently had an ileostomy, she's 4.5 months old and I was just getting very excited about the prospect of weening her before the surgery. I can't find any information online as to how to weaning a baby with an ileostomy, I know that high fibre foods are not advised but Nothing that advises how to wean with a stoma.

Could anyone point me in the right direction of where I could get more information?

Thanks

I think you need advice from your baby's medical team. Hope all goes well with the weaning

I know it's been many years, but did you ever find anything ? Have you got any advice for a new first time mum of a 5.5 month old with an ileostomy 😊

Didn’t really get much at all. The support with this was awful. We finally got a referral for a dietitian at 6 months and thankfully never needed the appointment as the stoma was reversed successfully.
The dietitian referral was through the community paediatric nurse but only after her giving me grief over lack of weight gain and me repeatedly saying but your not giving me advise on how to improve the weaning process.
I really wish you all the love as it’s not easy when they are so young and dealing with this. Also please look after yourself, you get a bit lost with all the hospital, nurse visits, researching x

to be honest, it's a sad day as it's not much better now in 2023. I was referred to a dietician on a 4 week waiting list for a phone call. She said that it was way above her knowledge and we should go back to the stoma nurses who have little experience of babies with stomas.

we are waiting for our PSARP which isn't until he's 8 months, we'll have the stoma until he's 10 months. Meanwhile I haven't go the foggiest what large range of non fibreous food to give the baby. He's too young for Dairy and going to get too big for purée the whole time.

awful, just awful.

Thank you so much for your kind works and support- when you know, you know- and I really needed to here that today. Xx

Oh you poor love, it really is awful that the support hasn’t got much better in over 6 years.

I vaguely remember bananas being great for thickening up the stoma output. I ended up using jarred baby food as it was so difficult to think and go about cooking meals for her because I was so stressed with the hospital appointments and changing the bags (especially cutting out the right shape).
I also swapped to formula from breast feeding as I don’t think I was making enough milk and she gained a slight more with that.

It’s such a difficult time, and i wish you all the best with the everything, as you said when you know you know. X