A Serendipitous Encounter
Ashleigh and Sophie discovered they had more in common with each other than just having ulcerative colitis.
Ashleigh’s Journey
Ashleigh was diagnosed with ulcerative colitis in early 2019 when she was 10 years old. I had known for a while something was not right, but it wasn’t until early 2019 that we became deeply concerned.
We had some tests done at our GP and were later contacted by John Hunter Hospital in Newcastle to have an appointment the next day with the head gastroenterologist. On arrival they mentioned they would have to do a colonoscopy as soon as possible to see if Ash had something called ulcerative colitis.
Whilst waiting for the colonoscopy, Ash’s health deteriorated. She was in so much pain all the time. She couldn’t attend school and was always needing to go to the toilet. She was rushed to receive the colonoscopy and we were told there was no doubt that she had ulcerative colitis. Ash went from never having had a tablet in her life, to having a pill box full of them. We spent many hours in and out of hospital, so she missed a lot of school and we changed medications many times. Every day was full of pain for her and tears for us all.
She couldn’t walk, let alone do the normal day to day activities children should be able to do.
Months passed only for all the medications to fail. Our next step was the “golden drug” infliximab, so the hospital visits started again, and her infusions began. But to our horror this still wasn’t working.
The next step was a drug called vedolizumab and we started these infusions before Christmas. And so far, this is the best my girl has been in over 12 months. We know that the prospect of a stoma is still there, and we have discussed this with Ashleigh, and she has an understanding of what this is about if we have to cross this path one day.
The past 15 months were a very emotional time, so I started reaching out for support for myself as a parent and connecting to support groups in Australia. In one of the support groups I found that another mum I was speaking with, Vicki, lived near me. Her daughter, Sophie, also had UC, she also was 11 years old, was in year 6 and was also having a hard time. She was also on infusions and shared the same doctors as us.
As a result of our meeting, our daughters, Ashleigh and Sophie started to know about each other. They started talking via Snapchat and it was like they both found someone who understood.
Finally, this year the girls had their infusions booked on the same days. Currently, we have infusions on the same date and the girls try to share a room. It makes infusion days just that little bit more bearable for us all.
I am grateful every day that we are surrounded by such an amazing group of family, friends, teachers, and doctors. The support we have been given has been amazing and has helped us through it all. Each day we are learning how to manage the challenges that come with ulcerative colitis and learning to live with the ups and downs that come with the disease. We know that this will never go away for Ashleigh, but we will take each day as it comes and see where we end up. One thing is certain, Ash will have the support from her family, friends and doctors along the way.
Sophie’s Journey
In April 2019, Sophie mentioned to me there was some blood in the toilet after doing a “number 2”. Being a typical mum, I said to her she was probably constipated and try drinking more water. A few weeks later l noticed she was having difficulty walking and she was complaining her knees were sore. I took her to a GP who ordered some tests, before the results came in she appeared to be getting worse and was very lethargic.
Off to hospital we went one Friday afternoon. Sophie was so scared that she cried for ten minutes in the car on the way to the hospital and then refused to get out of the car when we arrived. As she has never been sick, it was totally understandable that she was petrified.
The lovely gastro registrar, Lucy, came to see Sophie and instantly put her at ease. After being poked and prodded they decided Sophie would see the gastro doctors sometime during the next week. Over the weekend she became progressively worse. She spent all weekend lying on the lounge unable to get up, getting up several times in the middle of the night to use the bathroom, and she could hardly walk which we now know was because of inflammation in her joints. Sophie ended up being admitted the following Tuesday. The colonoscopy and gastroscopy the next day confirmed she had ulcerative colitis. After eight days in hospital
she cried for ten minutes in the car on the way to the hospital and then refused to get out of the car when we arrived. As she has never been sick, it was totally understandable that she was petrified.
The lovely gastro registrar, Lucy, came to see Sophie and instantly put her at ease. After being poked and prodded they decided Sophie would see the gastro doctors sometime during the next week. Over the weekend she became progressively worse. She spent all weekend lying on the lounge unable to get up, getting up several times in the middle of the night to use the bathroom, and she could hardly walk which we now know was because of inflammation in her joints.
Sophie ended up being admitted the following Tuesday. The colonoscopy and gastroscopy the next day confirmed she had ulcerative colitis. After eight days in hospital she was finally well enough to come home, just in time for her eleventh birthday.
The biggest struggle for Sophie has been the medications. In the beginning she would wake up inconsolable as she knew it was medication taking time again.
It has caused her (and our whole family!) a great deal of anxiety and most days she was late for school. After trying every different type of liquid and food you can imagine, she finally found what works for her and now she is a pro! Cost me a fortune in fresh raspberries – but I didn’t care. Now she takes all her medication with yoghurt.
Missing school and her friends has been hard on her, thank goodness for FaceTime. Sophie’s teachers and school friends have been absolutely amazing and supportive. Thankfully, since September 2019 she has remained well 99% of the time.
In January this year, she finally had enough money saved to buy her hand raised cockatiel, Buzz. Buzz has been a great companion for Sophie, she also takes him on adventures. Buzz has been to McDonald’s drive through and car rides with Barbie in the lounge room.
By chance, we happen to meet Leanne and Ashleigh! Both girls were diagnosed around the same time, they are the same age and then managed to have their last two infusions on the same day. They spent the day chatting, playing cards and comparing notes. The girls chat regularly sharing videos and stories about their hand raised birds, Buzz and Charlie.