Recently I got some news that was not so great about new complications with my FAP condition, that has challenged my positivity and made me once again come face-to-face with the devastating and unfair disease that FAP is.Read More »
Next week on September 11 it’s been 2 years since my proctocolectomy, where my entire large bowel was removed and a j-pouch was made from my small intestine to act as my large bowel. Life has changed for better and worse in that time period, but overall I think that my surgery and illness has in a strange way had a positive impact on my life ever since.
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For the first time since my surgeries and desmoid tumour, I went on holiday overseas, to Hawaii, with my rare diseases in tow. I was so nervous in the lead up, as with me… whenever I end up in hospital it is usually out of the blue and the last thing I wanted was to end up in hospital overseas. Luckily all went smoothly and I had an amazing time soaking up the sunshine and catching up with my good friend who showed me around the island!
It was also the first time going on a long plane trip since having my j-pouch (aka no large colon). I know that the altitude can cause a few problems so I was worried that on a 10 hour flight I’d be in and out of the bathroom a lot – but actually on both flights I had no issues at all and with my trusty aisle seat a bathroom was always nearby.
Taking a trip for me now means I have to do a bit more preparing with my travel insurance, doctors letters and making sure I have packed my medications – but it is do-able and this trip has shown I can get away with minimal issues, even while on active treatment for this desmoid tumour.
There’s something about getting on a plane and going far, far away that really made me feel I’d had a proper break from work and all the medical appointments associated with my current treatment.
I have no medical training, and probably know the most about the human body now than I ever have (I was never good at biology!) Learning to trust in professionals to treat me in the best way possible hasn’t been easy for me. I’m much better now but when I first was diagnosed I was constantly anxious that they had it wrong.Read More »