I‘m so sorry. It’s been a ridiculously long time since I wrote my last post. It’s just been so chaotic since we last spoke; with going back to work; enjoying the sunshine; attempting – and failing – to write a novel; and keeping up with my friends and family. It feels like every weekend me and Andy are maniacally busy, and every evening is spent just trying to relax enough to sleep before my next day in the office.
Going back to work on phased return is always difficult: especially in the media industry. It’s hard to just stop as the clock ticks past your allocated time in the office. I’ve always found the ‘return to work’ period hard, but this time I’m finding it an even tougher process. I’m starting to think it’s because I have so much more energy than last time. I mean I have no colon any more so most of my symptoms have now miraculously vanished, leaving me feeling relieved but wondering what new pain is in store for me around the corner.
I think I’m now going to spend the rest of my life wondering when the remainder of my digestive system is going to pack in.
On that note, I got a worrying letter from my IBD consultant the other day telling me they were going to discharge me from their care. Apparently because I have a permanent ostomy bag I no longer have Ulcerative Colitis. I almost fainted from the shock. After almost 14 years under the care of a gastro department at one hospital or another, I can’t imagine life without my specialist. The idea of it absolutely terrifies me. I think it would be unwise, especially as there has always been the underlying query about whether I have Crohn’s or Colitis, to discharge me, for me only to need their help in a few months time when things start to go to pot ( or down the drain ) again.
Imagine if they discharge me from their care and then it turns out it actually was Crohn’s, then I’d have to go through the agonising process of being referred by my GP all over again. I absolutely refuse to take my foot away from that very jammed open door. Surely I’ve earned to stay on their radar after everything I’ve been through.
I take issue with the fact I am cured of Ulcerative Colitis. Why, you ask? Shouldn’t I be throwing a party with gangs of people wearing “She’s Cured!” t-shirts and giving speeches on how grateful I am to be free from IBD. I just don’t agree with the word cure. I may no longer have the organ which caused me all those problems; I may no longer have to live in agonising pain every minute of every day; I may no longer be chained to the toilet stall – but I still have problems caused by years of disease, toxic drugs and sleepless nights. In my opinion I will have Ulcerative Colitis until the day I die. This disease has taken the best part of my life away from me; ruined relationships; holidays; career opportunities and cast a massive shadow over every little moment of the past 14 years. It has left me with riddled joints, osteoporosis at 26 and an intolerance which makes it almost impossible to eat out.
Oh, and am I forgetting something, it cost me my colon.
So, I’m sorry Gastro department I refuse to let you fob me off with a “your cured” tactic. I am healthier and happier than I’ve ever been in my life, but I still have pain; skin problems; digestive issues and agonising joints. I now have an ostomy bag and life is not always peachy: what if I need someone to help me with that? After years of being under the care of so many different teams, it makes me feel anxious to think I might soon be going it alone (which in reality I have been doing for years), with no way of knowing what is normal, and having no medical professional to call on for support.
Please don’t try to dump me on the surgical team. While they may be hot (some more than others) and incredibly attentive, they are not willing to keep me on their books unless I need future surgery – and I’m not willing to part with another major organ just to keep seeing the registrar, he’s not that hot!