Those words have stuck with me for 5 years since I came in to see you, looking for an answer to my long list of ongoing symptoms, many terrifying and embarrassing to say out loud.
Instead of getting an answer, you limited your investigation to my diet and exercise routine, because at my age that had to be the only reason why I was experiencing debilitating, red flag symptoms. I left the appointment being told that I had a lazy bowel, there was no point in doing a rectal exam or seeing a specialist at this stage and that I should work on my diet and take better care of myself. I wanted to feel better, so I got stuck into exercise and focused on what I was eating, but after a few months I knew it wasn’t making a difference and my symptoms started getting much worse.
I felt embarrassed to go to another GP for a long time after, until my boyfriend at the time convinced me that what was going on wasn’t normal, and really pushed me to see someone else and not leave the appointment until I had an answer and a plan.
I found a GP who finally did listen to me (and is still my GP now) and I was referred to a gastroenterologist to have a colonoscopy. I woke up from the colonoscopy to be told that my bowel was carpeted in hundreds of polyps, many were at the pre-cancerous stage as a result of having a rare genetic disease, familial adenomatous polyposis (FAP). Had I not found out about this for another 6 months to a year later, some of these polyps would 100% have turned to cancer and I would be in a much worse situation than I already was in.
I feel extremely lucky, rather than facing cancer I was able to have plenty of time to process my diagnosis before having major surgery (proctocolectomy) to remove my large bowel. A year on from my surgery I am facing other health issues related to my FAP, including an abdominal desmoid tumour which is another rare disease that is difficult to treat.
Despite these obstacles, I have a team of doctors who take an interest in helping me, constantly look for the best treatment options, appreciate that I am dealing with big things at a young age, and listen to my point of view on my own health.
There is definitely an assumption that you are only at risk for bowel cancer and diseases related to the bowel when you are older, but this is an assumption that could have cost my life. My symptoms needed to be listened to sooner, there are still red flag symptoms that need to be treated serious regardless of your age.
I understand what you went through! I had a similar situation…it took a while before the doctors thought it was something serious. I was only 27 when I was diagnosed with FAP as well. I had the same surgery as you and it was definitely hard…hardest thing I ever had to do, but I am so thankful for the ability to have it treated. Glad to touch base with a fellow FAPer!
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It’s scary how many people go through the same experience to be taken seriously. So nice to meet another FAPer.