Last year, we spoke to Kirsty whose eight year old son, Logan, underwent a life changing stoma surgery shortly before his seventh birthday. The last time we spoke, Kirsty described how finding the right stoma bag for Logan had given him a new lease of life. We’re catching up with Kirsty to find out how Logan is getting on and to learn more about his new found love of swimming.

 “Embracing life after surgery”

 Adapting to life with a stoma brings challenges that are difficult enough to overcome as an adult, let alone a seven year old. Luckily, Logan has always been a quietly confident kid, very sure of himself but also shy at times. We wanted to make sure Logan felt empowered to try new things, just like his friends. With renewed confidence, Logan started swimming lessons with his school.

Logan’s condition means that there are a lot of things that sit outside his comfort zone, so we decided to make swimming something that sat within it. Initially, I think I was more nervous than Logan was to start lessons, but he took to it straight away! He really comes into his own when he’s underwater, he absolutely loves it.

At school, his teachers know about his stoma, but he chooses not to share the fact with his classmates. His friend noticed him checking the bag and asked: “why are you wearing a big plaster?”. He proudly responded: “it’s not a plaster, it’s my stoma bag!”. We had been practising his responses, so he couldn’t contain himself when he came home – he was so excited to tell me about his reply. We’re so proud of the way Logan is navigating life with his stoma and not allowing his condition to hold him back.

“Before Logan’s surgery, we had our fair share of knockbacks”

“When Logan was born he had a whole host of bowel issues; lactose intolerance, reflux, vomiting and was unable to go to the toilet by himself. From the age of three onwards, we started a process called washouts (manual bowel irrigation). I remember that first year, I couldn’t even be in the same room as him during the process. It could take up to 45 minutes, and he was always so confused and distressed.

“We spent the first few years of his life in and out of hospital, as doctors tried to determine a diagnosis for him. During that time, Logan was experiencing pain that no toddler should have to deal with.

“A couple of health professionals assumed the issue was psychological, we were referred to one psychologist who said to him: “Logan, if you need to go to the toilet, you should just go”. I couldn’t believe it. We have met so many kind and caring professionals along the way, but I’ll admit there were times when we felt like we were the only people advocating for Logan.

“Finally, we got some answers. 

“Following test after test our family was referred to the Great Ormond Street Hospital in London. There, we met a consultant who had treated a patient just like Logan, and we finally felt like our concerns were being heard. We discovered that 25cm of his colon wasn’t contracting at all – and that’s why he found going to the toilet so difficult.

“The first three months after his surgery were a massive learning curve”

“I started researching childhood stomas, but I was struggling to explain what I learnt to myself, let alone to him. I tried to simplify it all into words that Logan could understand, even drawing him a picture before his surgery, so he could see what his stoma might look like and try to explain how it works.

“When we were discharged, the hospital gave him a Buttony Bear, a teddy bear who also wore a stoma bag. He still cherishes Buttony, and it has helped a great deal in making him feel like he isn’t alone with his condition.

 “As soon as Logan started wearing his stoma bag, he started experiencing red and itchy skin as a result of the sticky material that secures the bag to the body. It felt like we had just overcome one issue, for something else to come up. He was peeling his bag off at night because they were so uncomfortable. I decided to wear the bag for a few days, just to experience a fraction of what Logan was experiencing, and to show him I understood.

“These bags aren’t great Mummy, they’re amazing!”

 “I started looking into alternatives and came across the Genii™ stoma bag from Trio, which resolved his skin problems. Even his stoma nurses were shocked at the difference, having seen his skin before Genii™. It changed things drastically. For us, the bag has to function, so he can.

 “I can’t help but wonder about what life is going to be like for him in the future”

“In some ways, I think it’s easier to manage his condition while he’s still a child. I worry what his teenage years will bring, a time when those walls of communication are often put up. We’re trying to equip him with the tools and confidence to deal with difficult situations, when we’re not around to help.

“My advice to other parents going through the same uncertainty we did, and pardon the pun, is: “go with your gut”. Your instincts are probably right, and remember kids adjust way quicker than adults do.”