A Serendipitous Encounter
Ashleigh and Sophie discovered they had more in common with each other than just having ulcerative colitis.
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.
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.
A Family Unites
Georgia Richardson has been living with Crohn’s disease for 13 years and has become a stronger person for it with the help of her loved ones.
My first memory of my Crohn’s disease was when I was nine years old. I remember waking up for school and going to the bathroom. I remember wiping and all I saw was blood on the toilet paper and inside the toilet bowl. I ran to my parent’s room scared and ended up fainting twice.
After a few hospital visits, and being sent home because we were told it was only gastro, the final diagnosis was first UC, however I then later came to be diagnosed with Crohn’s when I was 13 years old. My experience with Crohn’s was difficult, scary and anxiety-ridden. Being so young I was unable to understand what was going on and why my body was going through this.
My body was also the type to be put onto medication and have It only last six to nine months roughly or not at all before having to change and try something new. I was given a plethora of medications to try, and experienced multiple flare-ups. It wasn’t until I changed hospitals to the Royal Children’s Hospital and was taken off everything and put on a medication called Methotrexate, taken via injection every week, that I started to improve.
For the first time this medication meant I could get out of bed, I could go to school, I could go out and see friends or play sport. I was no longer having to miss out on doing those things. This medication however did not come without limitations. Unfortunately I began to get major side effects including nausea, shortness of breath, vomiting and confusion amongst others, which would last for at least two days. I was on this medication for seven years. For a while I could tolerate the side effects because it meant getting to do the things I loved again, but in the last two years of being on this medication the side effects caught up to me, and I began to relapse. So I asked to change. I was put on a medication known as Stelara and for the first time ever I am on a medication that currently works and does not give me a single side effect.
The impact on myself definitely affected my mental health. I became anxious and didn’t want to leave the house, and when I did leave, I didn’t like to go very far. I always needed to know where the nearest bathroom or hospital was, both things I still do to this day especially when travelling to places I don’t know.
It has taken me a long time to be able to build back my mental strength, and I am now able to trust that I’m ok and can get through those anxious moments. My family and partner are my biggest supporters, and I am forever grateful to have such a support system. They have sat by me through every step of my Crohn’s and my mental health, but I also know that my health was not easy on them. I know that they were constantly worrying, constantly trying to figure out how to help and even had to miss out on things themselves. I believe having
Crohn’s was a learning curve for us all.
I feel like the people in my life do understand my Crohn’s to a large extent. They see what I go through, and they always try to support me the best they can and help out in any way they can. However I do believe that IBD is not an easy disease to understand, especially considering that every individual goes through different experiences with the disease. So unless you go through it yourself, there’s no way to fully understand it.
Live Fearless Challenge I have always wanted to get involved with anything that is related to Crohn’s and UC, and so when I came across the Live Fearless Challenge online one day, I decided to get involved. I also got my family involved, both immediate and extended.
Doing this challenge was my way of showing myself how far I have come and doing it for those who aren’t able to just yet.
That my family supported me with the challenge was amazing, even more so because they got involved. The first year of doing the challenge was the hardest, during the big lockdown in Melbourne and struggling with my irritable bowel syndrome (IBS) and mental health. Having my family do the challenge with me kept me going. I knew that I wanted to finish it the best I could while also not being hard on myself if I had days where I just couldn’t do it and needed to rest.
Having such a big group in the challenge really helped to get our group out there and raise money for the cause. Everyone did such a great job in helping to raise money and reach the distance goals. Having someone to walk with or ride with made all the difference and gave me extra motivation.
Where I’m at now
Currently I am in a good state Crohn’swise. It is back to being stable and under control, so I’m able to work, see friends, do things with my family, do things with my partner. Day to day however I do still have to take it easy sometimes. My body doesn’t always respond the same, I get tired a lot, I get sore muscles and joints, I get sick easily due to my immune system not being great, and I have IBS, which causes me the most stress. However, all of these are very much manageable and I have learnt / am still learning how to better take of my body.
My biggest focus is trying to find food that makes me feel good and making those kinds of lifestyle changes.
The biggest thing I have learnt about myself is that I am a lot stronger than I thought I was. Managing IBD takes a lot out of you at times and, I remember moments where I would feel so low because I was in pain all the time. But I also realised that no matter what I got through it, and it has made me a lot stronger.
The best way I try to care for myself on bad days is usually to rest up. It’s one of the biggest things you can do for your body when you have days that are hard and you feel like you don’t have much energy.
The advice I would give to others trying to manage and figure out Crohn’s and colitis, and something I had to really learn and still am learning, is to listen to your body as it will tell you what it needs, whether that be extra rest or a more chilled out day. Don’t be hard on yourself for the things you can’t do. It’s ok to focus on you and allow yourself the time to heal.
Jason Brennan achieved outstanding success in this year’s Live Fearless Challenge. Here he shares a few tips on how he did it
The main reason why I decided to participate in the Live Fearless Challenge was to raise awareness about Crohn’s and colitis. My health issues have never been a secret, but as a typical bloke, sometimes these things can be difficult to talk about and don’t normally come up in general conversation.
The fundraising was a great way to get people talking and it was very surprising how many people had been or knew of someone affected by IBD. It was great to raise awareness and let people know that they are not alone and that there is always support available. I managed to run every day and clocked up 169km for the month of September. It was hard on the legs not having a rest day, but the hardest thing was fitting a 5km run into an already very busy work and life schedule. My wife and I had recently added a third child to the mix in July, so our lives were still adjusting to having the new baby in the house. I cannot thank my beautiful wife Linda and kids (Lily 12, Tate 9 and Mila 3 months) enough for their amazing support during this challenge!
My friends and family are absolute superstars, which made the fundraising so successful. I had a lot of support from my family, but the Kalgoorlie community is an amazing place that always supports a good cause. Whether it be through work networks or local sporting groups, the Goldfields is always digging deep to help.
Brad McAuliffe threw off his doubts and refused to let ulcerative colitis hold him back from life’s adventures.
In mid 2016 I experienced my first ulcerative colitis (UC) flare, although I didn’t know it at the time. Like many others with UC, I was experiencing a ten on the pain scale and very quickly progressed to needing 20 to 30 toilet trips a day. It was the scariest four months of my life. I was struggling at work and university and no one had a clue what was wrong with me.
Once I was diagnosed with UC, my situation became better temporarily as I shifted between different medications that would work for a short period of time before losing their effectiveness. I was left feeling completely out of control of my life. I spent a lot of time thinking “why me?” and allowed myself to be buried in the disease instead of doing my best to continue living my life.
Throughout my adult life I’d spent all my time working and saving, so when UC struck it was a pretty massive change. I had a lot of ideas in the pipeline for cool trips and adventures I’d like to do but I never got around to any of them. Work, bills, house. Even after my first flare with UC I went back into the groove of working as much as possible and not taking much time for myself.
I think I had this idea that I’d be different and that my UC was under control; I could go and do those things at any time. I was wrong, terribly wrong. I don’t know if it’s the young male invincibility syndrome where you think you’ll be fine no matter what but when I went through my next series of flares and no new medications would work, I had a really tough time processing it mentally. What was the point of just working and saving if I’m going to keep getting sick and not really have any time to enjoy myself and what I’ve worked for?
At the beginning of 2019 I realised that I had this list of adventures I wanted to go on that I hadn’t even started. The reality of my situation with UC set in – I might not get the chance to do a lot of them in the future, so I decided to jump on the internet and book a flight.
The most difficult trip on the list at the time was Nepal. I had some idea that this would be the most difficult because there would be a lack of adequate medical support over there along with poor hygiene standards. Nepal also has a reputation for travellers getting sick. I’d seen photos of the Annapurna mountain ranges years prior and desperately wanted to see it for myself, so I thought “now or never”.
I started the fundraiser for CCA as a means to lock myself into going and not backing out when self-doubt crept in. I’ve been disappointed to see how far our public health system is stretched and how much a lot of the community are relying on outside donations to receive help. I was in a position to make something more of the trip and thought it would be a great opportunity.
November rolled around very fast, and before I knew it, I was on a plane to Nepal. The trip was the most challenging undertaking I’ve ever faced both physically and mentally.
I’d been put on Remicade a couple of months before the trip, but it didn’t seem to be working, so I also had to go back on steroids to make sure I wouldn’t flare up while in Nepal.
All the drugs I was on, and their side effects really wore on me not to mention managing the burden of carrying a case of pills around the mountains. Luckily, while away, I faced no GI related issues at all, not even an upset stomach from dodgy food or water!
Over 12 days I trekked 135km and climbed 8133m around the Annapurna mountains, crossing the Thorung-La pass at a maximum elevation of 5416m. I’d taken my health and fitness for granted a lot before being diagnosed with UC and I had a few moments on the trek where I broke down emotionally, just because I was elated that I was able to get out and do this trek while my disease was under control.
I really felt in those moments that I could achieve anything without my UC holding me back. The trip was a massive challenge that really took every bit of strength out of me, but I’ll cherish it for the rest of my life. The people I met, beautiful scenery I hiked through and the ability to do some good for our community and CCA made it the most impactful experience I’ve ever had.
I can’t thank my family, friends, everyone that donated to the cause and CCA enough for all they’ve done for me related to the trip – and I can’t wait to get out there and tackle the next one.