Parental Help for Supporting Young Ostomates
Hello Spring and bring on the Summer! How are you all doing? I write this as the kids are asleep having a lie on a non-school day, drinking an actual hot cup of coffee! I wanted to chat with the parents of ostomates today.
Certainly, during the last year, a lot of services that parents of children with additional needs rely on for informal advice have had to scale back. I know from having a 5-year-old with the bowel disease which we share, Hirschsprungs Disease, how vital it is to have a face to face connection with people in the medical world.
Not only for the necessary medical advice, but also to simple connect with people who understand more of what its like in your world compared to Jill next door (Jill is lovely, but having a poo chat just isn’t the same!). Visits to our local hospital would mean stopping half a dozen times in the corridor, chatting to the many lovely people who have cared for my little man and been a source of comfort and advice for myself as a parent. It is in those situations that I would gain a new nugget of information, a new avenue of research and support and therapy ideas to try, that sometimes get missed through the formal channels.
Are you one of those parents that go into appointments with a list of questions, a few big ones and then lots of smalls ones of things you would like to know? You end up leaving to find you spent so long on the big ones, the little ones get missed. The point I am making is you are not alone. There are places you can look for answers of an informal nature, and lots of useful companies that can lend a hand too:
1. Social media
Facebook parent groups were a place of solace for me. When we had my sons diagnosis it was the several parent groups of ostomates on Facebook that was the first safe space I felt I could ask anything and get genuine feedback from people who were in the same situation. Type in the search bar ostomate or parents of ostomates and a few pop up. Most need just a few questions answered to check you have a need for the group, then you may find yourself losing hours to scrolling through and more than likely finding someone else that has asked the same questions as you. There are also search bars within the group pages you can use to search for keywords such as ileostomy or waistbands.
2. Comfizz and Respond
We have used both companies for waistbands to support my little one’s stoma and feeding tube since he was a baby. Their websites are packed with blogs and guides to support you in every aspect of life as an ostomate. They have customer service lines where you can be sent out the information too and Respond do a regular magazine where you may have read a few things from a certain Mum! I have started running since my own ostomy surgery last Summer and use the Hi Line waistband from Respond which has been the best fit for me.
3. Colostomy UK
One of the leading charities in the UK with all the information you could possibly need and its own social media pages to follow too. Their 24-hour helpline 0800 328 4257 and support group information is invaluable. They have a lovely magazine Tidings which is a brilliant read too which can be downloaded for free.
4. Ostomy pouch samples
Ostomy pouch manufacturers provide samples to ostomates and those due to have surgery. For older children, having a tactile bag to feel and see can help them start to understand what it will be like and you can all have a go at sticking one onto your tummy to share in the experience. Your stoma nurse will give you your first bags to try after surgery, but for getting familiar and finding out which brands you may want to try in the future, samples are a great tool to use. Pelican Healthcare has released the new Pelican ModaVi ostomy pouch range – you can sign up to be the first to sample at pelicanmodavi.co.uk. They have many options to suit your individual needs and come in black which my superhero loving 5 year old is very excited about! Choosing your ostomy bag is a very personal thing, it’s so important you choose the best fit for you that makes you comfortable and confident.
There are a few children’s books that aid in introducing children to the idea of a stoma that can help support them mentally and emotionally through difficult times. A few I would recommend are:
Parents such as myself document their journey and advocate for the many different reasons why their children needed surgery. One inspirational little girl is Jessica from Liverpool @jessicasstomajourney where Mum Kim runs the account and uses it not only to educate but also to raise money for the local hospital and fund for teddy bears with an ostomy to be donated to children who have had surgery.
6. Stoma nurses
These magical beings are a wealth of information and can point you in the direction of local groups and charities to get in contact with. You can email or ring your assigned stoma nurse and ask for pointers in the right direction. They are there to support you so please make sure to contact them if you need them.
It may take a little longer for some avenues of information to come to light but please. My inbox is always open on Instagram if you would like to send me a message.
Take care x