Babies with Stomas

[CharlotteStomababy]

Greetings,

I am here a bit late in the discussion and am new to mumsnet. I have a 5 month old with a stoma and have been thru several surgeries. I am aiming to launch a website in the next couple of months for mums of babies with stomas, illiosomy's etc as I really struggled for the first couple months finding information and I feel that we mums could share our stories for new mums to help support emotionally as well as practically and for mums with more experience to share their tips and stories. As wonderful as the stoma nurses have been they do admit that we parents become the authorities on the subject. I would like to centralize all this information, from how to deal with the basics of putting on the bags, which bags work better, what to do when the stoma prolapses, and the emotional side of having a baby in and out of hospital. Although there are a few sites out there i would like to put it all in one place and create a starting point for mums. In order for the site to work, i will need stories and input. We go in for another round of surgery on tuesday so i will be away for a week or so, but will be gratefull if any of you mums will be willing to communicate your stories and tips and provide feedback for the types of things you would find helpful on the site/forum. I will let you know more details once i get things moving, in the meantime please let me know if there is any specific information you would like to be incorporated on the site.
Charlotte

Hi there
I don't have any stories other than knowing that many parents have a real hard time finding support in this area. I'm a Paediatric nurse and would be interested in seeing your website when it is completed.

Hi, sorry i probably wont be of much help as Ive experience from a medical perspective as a neonatal nurse. Wanted to post anyway just to let you know that I think its great that you're being proactive about the lack of support and information by getting out there and doing something about it. Good luck on tuesday, I hope everything goes well for your baby

Thank you very much for your support. Have had to delay site creation as we have been in hospital quite alot the past two months and i have struggled to meet with web designers. His levels of discomfort were agonizing and the hospital kept telling me it was colic. After some exploration under general, it was discouvered that he had been torn during his last surgery and that tear had become infected. We are seeing a new consultant this wednesday. I am aiming to have a tester site up by december. Will be in touch, as the site evolves it would be ideal to have someone with your knowledge on board. x

great idea charlotte i have a 11wk old baby with stoma done nearly 2weeks going though hell and back again would love info and will share anything i learn along the way best of luck plse let me know when you get site
Saying prayers all will be well with ds xxx

Sounds fantastic - DD2 had her stoma at 3 days old as she was born with an imperforate anus, then had heart surgery at 9 weeks old - she is a VACTERL baby. There is another thread on here about it: here (hope that works, not too good at links!).

Also, have you come across a site called Extra Special Parents? It's exactly what you are describing, not knocking what you are doing in any way, the more information out there, the better. I know I struggled at the beginning. Hope all the surgeries work out OK.

i have tried to get on to ESP still waiting for administrator to accept me nearly 2wks now how long does this normally take

Sorry, only just come across your reply - Debbie is usually pretty good, maybe put your application through again?

Hello!
My son has had two stomas and the last one, which he has now, he's had for 6 months. The last two months have been hell because he's so active the bags just drop off. Sometimes every ten minutes, no joke =( Other than that everything's been very good with his stoma. We've tried seven different bags and all sorts of powders and cohesive pastes (which our hospital still think don't exist even though we showed them!). Cohesive pastes are the way forward I believe though. If anyone has advice please email me. Or if anyone wants to chat or wants to ask any questions feel free! We've had quite a lot of experience with his stomas. He's still not officially discharged from hospital because of it!
Best wishes to everyone =)
Miranda
[email protected]

Hi MTay - good to hear from another Mum with a stoma baby - my DD (1) has had hers since she was 5 weeks old.

There is a current thread which a few Mum's post on - pop on over!

Rach x