Life With A Stoma When You're 13

***WARNING*** This post contains pictures of an actual stoma and scarring, do not look if you are squeamish.

We did a lot of groundwork with Pops to prepare her for life with a stoma, we used lots of pictures and lots of explaining to her what would happen at each step of the way. We obviously had no idea how she would actually take it when it happened. You can explain all you want to someone with Autism that a piece of their bowel will be stitched to their stomach, but until it's actually there you have no idea how they will react. It's been about 10 weeks since her 2nd surgery and we have both settled into life with a stoma and all it comes with. You can read all about her actual surgery in the blog post Not Where I Thought We'd Be and why her recovery has taken so long.

It's been a battle to find the right products for Pops to use with her stoma, ordinarily, you will use a flat bag that sticks on, but her stoma is flat on one side due to scarring so we are using a  different system, that's not been plain sailing though. Her scarring has progressed and naturally healing but at a very slow pace. Unfortunately due to her corrective surgery, she has scarring on either side of the stoma which has made life difficult for her. The best conditions for healing is clean and dry, keeping a stoma clean and dry is impossible, due largely down to the fact that poo comes out the end of it!!

It's taken the whole of the 10-week recovery for the scar to heal and only last week the final 2 stitches finally came out, I am hopeful that her stoma will pop out a little more now the stitches are gone and we can move away from the rigid bags, Pops doesn't find them as comfortable to wear as the flat bags. I can't believe how well she has coped with having a stoma so far, she amazes me every day. To begin with, she wasn't happy with me changing the bag, the bag only needs changing every few days and in between this time you empty it. Pops is really getting to grips with the care of her colostomy bag and I am sure in the future she will be doing all the care herself. She is already able to remove her bag herself and knows how to clean her stoma, we've got a bit of work to do before she can apply a new bag herself.

We have settled on a bag type and size and these are her last 2 boxes of bags that we have to cut ourselves. Her stoma seems to have settled at 34mm, so I sat and pre-cut all of the bags it makes changes so much easier and quicker. Her new delivery has arrived and it's got pre-cut bags in, so its bye bye scissors, which excites me. I do all of her bag care at the moment, but now she is all healed we are going to start showing other family members how to care for her stoma, so everyone can help her with it. Emptying the bag is really simple you just unroll the bottom of the bag whilst sitting on the toilet, it's not the nicest job and believe me when I tell you stoma poo absolutely reeks, you do get used to it, I am an expert at not breathing through my nose now!! Thankfully Pops seems to be nose blind to the smell and disregards it completely. When it comes to changing the bag it's definitely easier to have her lay down on the bed to do it. You have to position the bag right over her stoma and create a good seal to prevent it from leaking, we have had lots of leaks in the early days, it was a learning curve for both of us, but together we have got better and we haven't had a leaking bag for at least 3 weeks now, so I think we have cracked it. I think the fact her scar is all healed helps massively.


I can't explain the difference having a stoma has made to Pops life, she was so restricted before wearing nappies. It affected every part of her life from what she could to what she could wear. Before she lived in leggings and tunic style tops that hide her nappy, she's never been able to wear shorts and a t-shirt in the summer as she wasn't comfortable, she couldn't go swimming as you cant get swim nappies for a child who wears size 14 clothing. She couldn't do aqua therapy at school for the same reason, she couldn't go in our neighbour hot tub with her siblings and most importantly she couldn't go to the toilet for a wee! She's been bladder continent for years, but the council only allow you 4 nappies per day on the scheme, so she wasn't able to remove the nappy every time she went to the toilet. I think of all the things she is enjoying going to the toilet is the biggest change, I think for me too as trying to find an accessible toilet to change her in was always a nightmare, so we tended not to go out in case she needed changing. We go away in October and this is going to be her 1st holiday with no nappies, her first holiday where she can go swimming, 1st holiday where she can wear clothes that other 13-year-olds wear and she is soo excited.

We were worried about how life would be for her with a stoma, even the doctors didn't want to do a stoma at first due to her age. But, honestly, it's been life-changing for her in all the right ways, she can do so much more and she is so happy. It was a tricky, worrying road not helped by the cock-up in her first operation, but through it, all she's been an absolute trooper as always. She amazes us every day with her resilience, she is honestly amazing!

Thanks For Reading

Mandy

xx

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