This is a long one today!
If you have a chronic illness then you know you just can’t escape it. It’s with you forever, and it will show up day after day. It’s like a job you hate, but you are stuck with it.
I have a 16 year old son who has big dreams and I love every bit of it. He’s at that sweet spot in life where the world is his oyster (corny, but true!). I love hearing his stories and plans. This has made me reflect a lot lately.
When I was his age I was the same – ready to go with 100 ideas. I had just got a scholarship to boarding school in Bathurst and I was preparing to leave home for good. I was still a baby!
I had no idea that at age 18 all of my dreams were going to get tossed around. I had no idea what was around the corner. I look at my son and think dream hard, go for it, don’t stop because you just don’t know what’s ahead of you. I’ve been reflecting a lot lately.
I’ll back track a bit if you’re new here…
At age 18 I started showing symptoms of a bowel problem. I was living on campus at Uni in Canberra and I was drinking and eating terribly (as you do with Uni life!). I thought it was the lifestyle. I ignored a lot of symptoms for about 10 months until the weight started to fall off and I was passing blood. My mum made me go home to Albury for a few weeks to have tests done. Very quickly I was diagnosed with Crohn’s Disease. My dad was with me for that appointment. We both had no idea what the doctor had just said. We walked out of that room with a pile of printed material (we didn’t have google on phones). I remember I took a deep breath and decided to just get on with things. Part denial, part ignorance and part just wanting to be ok. Because I had massive dreams at the time!
The answer back in those days was steroids so I hit them pretty hard. At my 21st birthday my face looked like it had been stung by a bee. But I was reasonably well.
A few months after my 21st I was married and my health was half and half. But it didn’t really hold me back too much. I had a good job at the newspaper and I was determined to not let an illness stand in my way.
Then came baby number one at age 24. I was so well while I was pregnant. I couldn’t believe it! I gave birth naturally, but in hindsight that should never have happened. A few months later I developed a fistula and since then, they never stopped appearing. I got on some trial drugs (Infliximab at the time) and they got me well enough to get through 2 more pregnancies. I was so healthy while pregnant and feeding! It was like my body needed something else to concentrate on. My doc used to joke and say “oh well Katrina you may just have to stay pregnant!” So this actually gave me about 5 years of pretty good wellness in total. Over these years I worked for a real estate magazine and in a display home while juggling the boys.
So my 20s were one big baby blur. Until I turned 30 and then everything started up again with my Crohn’s Disease. I had just got my real estate certificate and had started in this wonderful world of blogging. My Crohn’s was pretty awful actually. I got on a new drug Humira in 2008. It was working ok for a bit. Except I had a constant cough, then an ectopic pregnancy (I didn’t know I was pregnant because I had the mirena in – that’s another story no one can explain!) which triggered emergency surgery and now I only have one fallopian tube. I also tested positive for TB at this time (!). I had to come off all the drugs and back on steroids. BUT I got well again!
Then came The Block. You might have thought why did I go on that after all these medical issues?? Ha! yeah I wonder too! But this is me – full steam ahead. I was managing my Crohn’s, and I couldn’t possibly just sit around for years not being able to do anything, or frightened of my illness because that would have sent me in to depression.
The last few weeks on The Block did get me. My Crohn’s wasn’t great. I had leg ulcers, I’d lost a lot of weight and I had oedema in an ankle. But I wanted so badly to keep going, to make it work! I am so glad I went on The Block. I am very grateful for what it taught me, and for what it’s given me since then. Two things – the courage to not hide behind chronic illness and the freedom to be able to work from home while managing Crohn’s (but the worst was yet to come!).
Fast forward to the past 3 years. It wasn’t great. The fistulas kept coming, I was septic many times, I had viral meningitis and was put in isolation. I had about 8 trips to hospital every year for the past 3 years (sometimes in an ambulance). I was full of infection constantly and couldn’t leave the house much. I got back on Infliximab infusions but had a massive reaction so that stopped. I still kept going! Again, I worked for a display home, I grew my blog (which is my main source of income), I built a new home and never once lost it, or fell in a heap. I just kept treating the disease as another job I had to do. It was a part of me and I HAD to learn to incorporate it in to my life. I learnt how to rest when I needed to, and then when I was well I would go hell for leather!
My husband and kids have never known me without Crohn’s. It’s always been hanging around in some form and they’ve just become accustomed to my symptoms and the need for certain things to happen. That’s where I think I can say I am truly grateful – to have boys who know when they need to step up.
This time last year I really was at the end of the line. I was getting sicker and sicker. I was in hospital in Wagga one day and a registrar lady doctor sat with me and questioned WHY I kept putting up with this? Why hadn’t I thought about having big surgery to improve the quality of my life? No one had really said it like that before. I could tell on her face that she was horrified that I just kept getting on with things. That day changed everything because life had suddenly hit me in the face. Was I happy to just be ok? Or would I take the plunge and flip everything on its head. Sooooo…. I moved my care to Sydney and saw a doctor who made that decision for me – permanent colostomy surgery asap.
I wrote all about that surgery here.
Now 8 months on living with a colostomy bag has given me some space to think about life. To reassess where/what I want! I feel like I am back where I was 23 years ago – like a fresh teenager with dreams and thoughts about my future. It’s like I’ve travelled in a massive circle.
I shake my head at the thought of some of the things I’ve put up with over the years. But then I remind myself of all of the awesome things I have still managed to do (even while septic!). I still showed up every single day. I wrote here on my blog, I went to work, I cared for my boys, I showed up at their sport, I saw my friends.
I carved out a life that incorporated a chronic illness. I am pretty proud of doing that. I know I also missed out on a lot. I know I could be waaaay further on in a career, financially, personally. But it wasn’t to be. I know that an ostomy isn’t for everyone who has Crohn’s or Colitis. It depends on where/how your disease affects you. But for me, you all know how much this has made a difference to my life – to my whole family. I am still a realist though – last week I discovered I have a hernia and maybe down the track that will need to be dealt with. I also know my bag doesn’t mean my Crohn’s is cured but is resting just for now. I also need to have a full proctectomy in the next 5 years (don’t google! 😝). But I’m ok with it all.
So can you thrive with a chronic illness?
The answer is YES. When the body won’t do as it’s told, then the focus needs to be on the mind. You can’t control the symptoms, but you CAN control the thoughts.
A colostomy bag has given me some well deserved breathing space…. to carve out yet another path. I will try again to start a new career (even though I’m 41!) and I will never stop trying to push harder for bigger and better things. If Crohn’s hits me again one day soon then I’ll deal with it like I always have.
Thanks for reading if you got this far. Oversharing is my middle name. Ha! But I get messages almost daily from people with Crohn’s or from people who know someone with this disease, so sharing the good and bad with them does help I am told!
Lots of love,