MY STORY-Health Journey
MY Health Journey started as a young teen with many gastro problems it was a medical mystery to gastrenologist,specialist it felt like a guessing game after going on a lifestyle change of foods I was symptoms free for a bit until I was in my early 20's with bad symptoms that felt they came over me overnight, many emergency rooms, Hospitals an many more specialist, in 2022 I had some answers I was officially Diagnosed with Gastroparesis but little did I know it wasn't the end it was far from it. I Began to unable to walk far, eat,drink lost a lot of weight I lost most of my weight rapidly it went fast, many Syncope episodes I was being brushed off as Vertigo and I just knew it was something else months later a specilaist Diagnosed me with a condition called Postural Orthostatic Tachycardia Syndrome,prior to all these conditions I also had May thurner syndrome on top of it making it more tough for treatment or management. 2024 I was diagnosed with hypermobility ehler danlos syndrome and Mast cell activation syndrome, during an after my diagnosis my Gi symptoms kept getting worse at the point I wasn't able to use the rest room my motility issues were getting worse many failed attempts with stool softeners,colonscopies, constipation medications all failed I seeked out a second opinion an thats when I ended up with my ileostomy it was the best decision I made my symptoms subsided , I could eat a bit better an leave my house! My grandma had ostomy when I was growing up she had rectal cancer as a child growing up around that I feel was a huge impact on my life as viewing it as everyone is special and unique in their own ways, my grandma never hid her ostomy and when I got mine I never did either I feel being around her during that time as a child gave me insight of the qualities of body image an who cares what others think,little did I know over 9 years after her passing I would be on my own health journey,she gave me the insight that others arent so lucky to have. I am beyond grateful what she had me apart of even if it was unintentional it was a big impact on me years later when I needed it most. Many are afraid of what others think,not me #ostomyassociation
Navigating the world of chronic gastrointestinal issues can feel incredibly isolating and frustrating, especially when you're constantly seeking answers. My own health journey, which the OCR highlights as moving from "healthy to having multiple chronic conditions," often revolved around finding the right gastrenologist – or, more accurately, navigating many of them. When my journey began with what felt like a "medical mystery," I saw numerous specialists. It wasn't just one doctor visit; it was a carousel of appointments, tests, and often, uncertainty. For anyone out there currently struggling with unexplained gut problems and considering seeing a gastrenologist, know that your experience can vary. I went through countless tests that a gastrenologist typically orders: endoscopies, colonoscopies, motility studies, and even diet elimination trials. Each time, I hoped for a clear diagnosis, but often the results were inconclusive or didn't fully explain the severity of my symptoms. It can be disheartening when a gastrenologist diagnoses you with something like IBS, only for your symptoms to worsen. That's where advocacy became crucial for me. I learned that it’s okay to question, to seek clarification, and to absolutely get a second opinion. My journey saw me through many emergency rooms and hospitals, and often, different gastrenologists had different perspectives. If you feel unheard or that your concerns are being dismissed, don't hesitate to politely but firmly explain your symptoms again, or ask for referrals to other specialists who might offer a fresh pair of eyes or a different approach. Receiving a diagnosis like Gastroparesis in 2022 was a turning point, but not the end of the struggle. Even with a specific condition identified by a gastrenologist, finding effective management can be a long road. We tried medications, dietary adjustments, and different lifestyle changes – all under the guidance of my gastrenologist. Yet, my motility issues worsened, leading to severe constipation and an inability to eat or drink properly. This made daily life incredibly challenging. The decision to pursue an ileostomy, after many failed attempts with conventional treatments, was not made lightly. It came after extensive discussions with my gastrenologist team and considering every other option. For me, it truly became the best decision I made. It wasn't the initial solution a gastrenologist might offer, but it was the necessary step for my specific, complex case. It allowed me to regain some quality of life, to eat a bit better, and even leave my house again – things I thought were impossible before. My experience underscores the importance of persistence in your health journey. Trust your instincts about your body. While gastrenologists are experts in their field, your lived experience is invaluable. Don't be afraid to keep searching for answers, to ask for detailed explanations of your diagnosis and treatment options, and to find a medical team that truly partners with you. It's your health, and you deserve a gastrenologist who will help you fight for it.
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