My name is Aisha, and my journey at GOSH began at the age of 4 when I was diagnosed with a form of inflammatory bowel disease known as Crohn's. I am now 16 years old and continue to be cared for here.
IBD is classified into two types: Crohn's disease and colitis, both of which cause intestinal inflammation. I have Crohn's disease, which, unlike colitis, affects any part of my digestive tract, including my mouth. Severe stomach pain, diarrhoea, blood in my stool, rapid weight loss, nausea and sickness, and fatigue are all common symptoms for me to experience, particularly during a flare-up. Because of their severity, these symptoms can be excruciating and persistent, interfering with daily life and making it difficult to do anything when they are at their worst.
Because my Crohn's is so aggressive, I've had a number of procedures and am currently undergoing treatments to help manage it. For example, at the moment, I get most of my daily calorie intake from something called parenteral nutrition, which gets infused directly into my bloodstream through a PICC line overnight for 12 hours. This allows food to bypass my gut entirely, minimizing the amount of work it has to do, therefore, reducing the likelihood of future flare-ups. I've also been living with a stoma bag since 2020, and in 2021 I had my large intestine removed as it was too inflamed and damaged, making my stoma a more permanent addition to my life. As well as this, I have a feeding tube in my stomach for any additional feeds and medications, and I continue to visit GOSH regularly for infusions.
I know many other patients will be able to relate to feeling overwhelmed and isolated as a result of their suffering, but I know from personal experience that a positive attitude can make all the difference. Being diagnosed at such a young age means that living with Crohn's is all I've ever known, so I've always been open and honest about my condition. In school, I've given numerous presentations and assemblies to raise awareness for invisible disabilities, charities, and IBD, and in my personal life, all of my friends and family are aware of my journey because I believe that hiding my illness would be far more burdensome than being honest. Despite this, I understand that the journey of loving and accepting yourself for who you are can be long and frustrating for many people, but self-confidence can be gained back so my advice to others is to not rush this process, but rather to be honest with yourself and learn to embrace yourself for who you are.
"Your illness does not define you" is something I hear frequently, but I don't necessarily agree with it. My condition is something I have had and will have forever, so whilst it does not define me entirely, it is an important part of my life that has impacted every aspect of who I am today, so it should not be easily overlooked or hidden. If it wasn’t for my Crohn’s I wouldn’t be so ambitious, resilient, or passionate about making a difference, it is a part of my identity that has given me many opportunities and taught me so much; not only about myself, but it’s also impacted my outlook and how I perceive things in everyday life. As previously stated, self-confidence can be regained. It's critical not to care what others think of you because they'll never understand your struggle, so trying to have this carefree attitude can make a difference.
In addition to being open about my condition, I've discovered that ensuring that I'm heard and acknowledged by the healthcare professionals who treat me helps to create a positive hospital experience. When I was younger, most health-related conversations were directed to my parents because I wasn't always confident to speak up or understanding of what was happening; however, as I grew older, I felt a desire to be more involved in my care and didn't always want my parents to speak on my behalf. As a result, I believe that when you are ready, ensuring that you are heard during these important conversations that should be primarily directed towards you is crucial for giving you more control over your health, as I know it has definitely helped me gain confidence and is preparing me for my transition to adult care.
That being said, I believe that communication is essential, especially for healthcare professionals when relaying important information. Regardless of their situation or age, acknowledging a patient is necessary and there can be ways to go about this; for example, things can be explained in a more simple or playful manner for younger patients so that they understand, even if it is briefly, why something is being done. I also believe that as a healthcare professional, you must understand your patients' boundaries; many of us have had traumatic experiences in the past, so understanding why we may be hesitant to do certain things is a critical part of our care.
My time at GOSH has been full of challenges, but my happy memories far outweigh the bad thanks to the wonderful staff and welcoming environment; I hope to make many more for the rest of my care here.
