“There are others out there who’ve had this most of their life and are now doing okay”- Rob’s story
My name is Robert, I’m 72 and I’ve had ulcerative colitis for about 44 years. I was a smoker and truckie, always on the road. I was diagnosed the old-fashioned way, by a doctor in Geelong. He used something like a periscope to look around, and that’s how he figured it out. I remember one night—I was home in bed and I just had all these pains I couldn’t get rid of. They were really, really bad. So I drove myself down to the hospital. They did all the tests and referred me to a specialist, and that’s how they found it. I’ve never had the pain that bad since.
Back then, I didn’t have it really bad—just a lot of pain. We sort of let it go for a little while, then it’d come back again, and that’s when they put me on steroids. Once it started to clear up, I’d wean myself off. Then I’d get it back every now and again, not all the time.
But I never changed my eating habits. It was something I didn’t want to do because I thought otherwise, I’m not going to be eating anything. I was thriving off flat lemonade and Salado biscuits. As a truck driver for about 40 years in the state, I was eating rubbish on the roads and always had steroids with me, just in case something flared up.
In 2009, I gave up smoking just before I had a heart bypass in 2010. That wasn’t related to the ulcerative colitis, just family history. My father and all his brothers and sisters died of heart attacks. After that, I started having infusions every eight weeks. That was all right for a few years, but then I got it back again. So I went back on steroids and started infusions every six weeks. That worked for a little while, but it just kept coming back again.
I changed my whole attitude after I had the heart bypass. Before that, it was just: who cares? Do this, do that, don’t worry about it. But now I’ve got my own blood pressure test, I’ve got a diabetic tester. I don’t use them every day, but every now and again I’ll go, “Okay, I’ll just check it.”
Everybody’s body is different. Everybody knows their own body. Sometimes I might eat something and then get the runs for a day or so—but I don’t panic about it. Maybe it was the chocolate I had. You just don’t know. Unless you’re eating something regularly and going to the toilet regularly, it’s hard to pinpoint. You’ve got to experiment with yourself.
The past two years, I’ve found a medication that works. I’ve been on a tablet called Rinvoq, 30mg, for about 18 months and I haven’t looked back. I go to the toilet once a day. Everything is fine—it’s settled, which is good. I still haven’t changed the eating habits completely. I drink alcohol occasionally, but I don’t smoke. I’m fit, I’m healthy. I’m a different person now.
I just wanted to let people know that there are others out there who’ve had this most of their life and are now doing okay. I really hope this will help someone.