“I was made to think it was all in my head for so long” – Simone’s story
My story began long before I can possibly remember. I started seeking answers about 5 or 6 years ago now.
My symptoms included: urgency with diarrhoea, mouth ulcers, cold sores, itchy skin on the lower part of my legs, geographic tongue, extreme pain, mucus, blood, severe lower back pain and severe fatigue. I started to see a Gastroenterologist to seek answers and had a colonoscopy/endoscopy. The first one showed nothing, and it was ruled as IBS. I got sent on my way with Gastrostop and accepted that diagnosis. After a year my symptoms got worse so I went back to the same gastroenterologist, who said she wanted to do another colonoscopy/endoscopy.
This showed small superficial ulcers in the terminal Ileum (small bowel), which she said was “nothing to worry about.” I started on new medication and was told to meet again in six months. After another year my symptoms gradually became worse and it was evident that it was not working. I got a CT scan and an MRI which showed mild Crohn’s disease. Fast forward to November 2024, things started to get really bad. I was now getting sick after every single meal – I couldn’t keep a cup of tea in. After a month I decided to go to the emergency room as I wasn’t keeping any nutrients in, and was losing weight very quickly.
I was hooked up to an IV with hydrocortisone steroids for four days with fecal calprotectin levels in the 3000’s. The hospital had a gastroenterologist who came to see me each day, as he was concerned about my FC level. I was eventually discharged with oral prednisone. I went for a follow up appointment with my gastroenterologist two days later who was still convinced that it wasn’t inflammatory bowel disease, rather IBS. He wanted me to try Imuran (Azathioprine), an immunosuppressant. I was on that for almost a year with no improvement. Still unsure, my GI booked me in with my OBGYN thinking it’s another condition flaring up.
At this stage it’d been years. I was mentally exhausted, gradually getting worse and needed answers, so I sought a second opinion with another gastroenterologist. I arrived hopeful but slowly realised that he wasn’t sure either, and I was crushed. I remember crying, but still holding on to the slightest bit of hope. It’s not until I mentioned my severe lower back pain that the gastro suggested Sacroiliitis – a joint condition. He said “let’s get an MRI done on your SI Joint — if it comes back as Sacroiliitis then I’m more convinced it’s Crohn’s Disease.” At this stage I was livid. I thought, “why on earth is he looking at my back for when I’ve got gut symptoms.” I put off this scan for months, before eventually getting it done. It confirmed that I had Grade 2 Sacroiliitis in my SI joints.
By the second appointment with this new gastroenterologist, he finally diagnosed me with mild Crohn’s disease and Sacroiliitis, and gave me the go ahead with a Rheumatologist to start a Biologic medication. This, to help both conditions get into a state of remission. I remember crying uncontrollably after the diagnosis. It took six years and two GIs to finally get one confirmed. I was made to think it was all in my head for so long — now I’m finally validated in how I’ve been feeling.
My story is a big reminder that if you aren’t happy with your current medical team, you don’t have to stay because you think they are the professionals. You are the only one who completely knows your body. You are the one who suffers. You are the one who has to pay for these appointments, which are not cheap may I add. Follow your gut (pun intended), which is what I should have done many years ago, and push the button for another opinion.
My mental health and physical health have suffered for years now. I will soon start my journey with biologics. I have a giant fear of needles but I’ve never been so excited to hopefully experience remission.
You are strong.
You’ve got this.