“I’ve managed to do so many things I wanted to do” – Tom’s story

An edited transcript of a chat between Thomas Zahariou and Broden Kelly from The Footy With Broden Kelly podcast

You can listen to the full chat here: Crohn’s Disease with Tom – The Footy with Broden Kelly | Podcast on Spotify

Support Tom and his team (The Footy with Broden Kelly) as they take on the Live Fearless Challenge!

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I have a few very clear reasons why I wanted to talk about Crohn’s Disease.

One, not a lot of people know about it. It’s what people term an invisible disease or an invisible disability. I don’t have crutches or anything that’s visible. But we have a lot of young listeners, and I want to speak to them directly. I’m also in Facebook groups and support networks for people living with Crohn’s Disease and ulcerative colitis, and there’s genuine despair out there. So many people are so sad.

At one point I was super low, and I got out of it. I thought I’d never be able to perform again. I’d never be able to travel, and I wouldn’t be able to leave the house. I’ve been able to do all of that. I’ve managed to do so many things I wanted to do – that I never thought I could do. By sharing how I feel, I hope that people will draw some hope from that.

It started when I was 20 or 21 years old.

Prior to Aunty Donna, I was playing in a rock and roll band. I had a bit of the invincibility complex. I smoked, I drank whatever I wanted, I did whatever I wanted and I didn’t take care of myself. I was young and very silly. We moved out of home super early, at 18, living our lives in Ballarat. I remember the first signs of a flare up so clearly.

I used to take my Coles uniform with me to work to change into. I noticed when I was sitting down to change my shoes, when I bent over, I would feel queasy. I’d also feel light-headed and uneasy. Now, did I go to the doctor? Absolutely not. Following this, I started to feel sick all the time. This is what’s so difficult about invisible diseases. When I talk about sickness – it’s not anything I could put my finger on. I was tired. I was often run down, and I’d sleep for 12 hours a day. I’d also be feverish. I was just generally unwell.

The next thing I noticed – when I went to the bathroom, I’d wonder if I’d wiped properly. I’d wipe my bum, and there would be blood on the tissue. I remember thinking, “Oh, God, that’s a bit weird. Do I have a cut?” But there was no pain in that area. At one point, I asked my housemate, “do you ever get blood after you wipe?”

Famously, the response was, “yeah, every time we go out for dinner, and we have a big feed at KFC.” Many months later, I found out he was joking, but at the time I thought it was normal.

Then the intense pain started. In addition to the blood and queasiness, I was starting to experience really bad cramps – like intense stabbing pain in my pubic area. When I described it to friends of mine, they said it sounded like period pain.

Now, did I go to the doctor? I did not.

For context, I hadn’t been for years, and I didn’t have a regular GP. I didn’t feel like I had that infrastructure or support network.

Broden: for a long time, I remember you as being sleepy and sweaty and tired.

Tom: I lived in a condemned property in Reservoir (Melbourne’s north) and didn’t have anyone to talk to about this.

Finally, the pain got so bad that I went to the doctor. That was the first time I had a rectal exam. At the time, I remember feeling so uncomfortable that I had all these issues going on with my body. But, even then, I thought, “50-year-old men get cancer because they refuse this test.” So, If I have one message to our listeners – it’s this.

Just do the exam

It’s not that bad, and things can go seriously wrong down there.

After these tests, the doctor said that it sounded like a urinary tract infection. I went on medication but returned to the doctor with the same pain. The doctor didn’t know what to do. A bladder scan came back negative, and issues persisted for a period of about six months. Half a year of serious pain, that continued to get worse and worse. Fortunately, the medical team were passionate about finding the root cause and discovering what was wrong with me. We discussed everything, and I was getting blood tests on a weekly basis. The results showed serious inflammation markers. Something was clearly wrong.

The doctor asked me if I had been completely honest with them about everything. I replied that I had been. They then asked if there was something wrong with my guts. I mentioned the blood in my stool, which I believed to be 100 per cent normal.

Revealing this kickstarted my journey to diagnosis.

I was a casual staff member at Coles – but I wasn’t really working anymore.

I was calling in sick so much that my boss stopped giving me shifts. Eventually I went for a bowel ultrasound. Following the test, the radiologist asked me when I had my next doctor’s appointment.

They suggested I book it now, and to take the results with me.

She gave it to me in a sealed envelope and told me not to open it. Of course, I did so straight away, and it revealed that it was highly likely that I had Crohn’s Disease.

I called my stepmum straight away. She’s a very strong women, but she broke down. I wondered how bad this diagnosis could be. Google told me it was just inflammation in the bowel, which didn’t sound so bad.

The doctor said I needed to see a gastroenterologist, which I did.

Broden: As a dumb 20 year old, I thought the diagnosis was directly connected to your diet, smoking and lifestyle choices.  

Tom: I wasn’t looking after myself, and I put off going to the doctor for ages, so things could’ve been different.

But there are lots of people who lead completely healthy lives, and still get diagnosed with IBD. After seeing a specialist, they affirmed that it was likely to be Crohn’s Disease.

I still needed to have a colonoscopy, as well as other medical tests. In the meantime, I underwent a three month course of steroids. I remember going home one day in so much pain, and with such a big fever, that I called my mum to tell her I was dying. She picked me up, and we went to the hospital. We waited from 10pm to 8am without getting admitted. Once I was in, I got my blood test results within 30 minutes. They said my flare up was so bad that I was effectively shutting down.  

I was put on a drip to keep me alive. I was put in a nice, well-lit room and, with steroids, I felt like a million bucks. I stayed in the hospital for about a week and was officially diagnosed. I left the hospital and went back to my life but continued to feel really sick. I was then put on immunosuppressants and another course of steroids, but I started to deteriorate. Despite going to hospital, I still didn’t return to the doctor.

The only thing that got me moving was my mum, who was paying for everything. One day, she went to Centrelink to get a disability pension for me. I was supposed to go in to sign a bunch of documents, but I couldn’t get up to go. I was exhausted. She called me in a state of fury, and I told her that something was seriously wrong.

The next morning, I woke up at 3am screaming in pain. It’s hard to describe the intensity of what I was going through. It was pain beyond pain. The hospital admitted me straight away. They did scans and told me I had a big abscess in my bowel. Essentially, my faeces were leaking into my stomach and becoming septic. They told me they were going to cut part of my bowel out.

I wasn’t dying, so it took about three days before I went into surgery. During that time, I was told I’d need a colostomy bag.

I told them in no uncertain terms that I wouldn’t have a colostomy bag.

I didn’t understand what it meant – but I if I got a colostomy bag, I was convinced that it would be the end of my life. I couldn’t play guitar again, which was my big focus. I said to my surgeon, “please don’t give me a colostomy bag.” He goes, “Tom, I’m cutting out a metre of your bowel. Your guts won’t work properly. You need to have a bag.” My reply was, “please. I’m in a band. Don’t give me a colostomy bag, please.” I feel so silly about it now, because there’s so many people with colostomy bags who live perfectly normal, full lives.

I was at my lowest point. They were bringing me forms saying, “there’s a chance you might die during this surgery,” and “you might die if you don’t get the surgery, but x% of them go wrong.” I still didn’t understand what was about to happen to me. I went in for the surgery, and when I woke up, the pain is indescribable. It was a nightmare of pain.

From just below my nipple to the bottom of my pubic area – everything was cut open. They removed about three feet of my small bowel, and about two feet of my large bowel. They cut all the disease out, chucked it out, and stitched me back up. I woke up with no bag.

All I remember was the intense pain. I had morphine in my right arm, and a clicker for ketamine on my left arm – you could click it once every minute to get relief. I was clicking like crazy. This experience in hospital was awful. There was a woman next to me who was screaming all night long. A guy across from me who had memory loss and ripped out his catheter one night. I woke up from surgery with a tube in my stomach and a catheter – I had no idea that was going to happen. It was just pain.

For 10 days, I was lying there. I had to learn how to walk again because my stomach muscles had been cut open. I’d walk up and down the hall with a drip. I was in hospital for over two weeks, and being there for that amount of time is brutal. I was constantly in pain, on morphine, and my sleep was constantly interrupted by the medical team checking my vitals.

I remember being told I could eat for the first time in about 15 days. I woke up at 3am needing to use the bathroom for the first time. I called the nurse to help me, and she didn’t come. I got out of bed urgently needing to go. I went a few steps before shitting myself. I can’t express to you the pain of that first bowel movement after surgery. There was blood, mucus and acid. It hurt so much. Finally, I was standing there, shaking in pain, with shit all over the floor. Eventually, the nurse came, helped me to the bathroom, sat me in a chair and left me under the cold shower for 30 minutes. I buzzed for her to come, and she never did. Things like that – truly traumatic. With the staples still in my stomach, they eventually took me home.

I went back to my mother’s place as there was no chance I could go back to my rental, and I started to recover. I exercised every day and started to eat again. Slowly but surely, I got a bit stronger. But my bathroom issues never stopped. I constantly had the runs and experienced pain connected to my bowel movements.

Broden: I knew you were in hospital and having surgery, but I was so unaware of the depth of what you were going through.

Tom: I remember being in such despair in the hospital, just wanting company.

Really, with the loneliness and depression, I thought I was going to die. I had the sense that I wasn’t going to be able to live my life again. My thinking was; if the surgery doesn’t kill me, this illness will.

Now, I had to return to work. The problem was that I was not able to have a normal bowel movement. I’d get a minute’s notice at most, then go through intense cramps and pain. It felt like knives in my guts. I experienced incontinence a bunch of times in relatively quick succession.

Once was really unkind – as I was trying to get back into the gym. On the way, I went to a family store, told them I had a disease and urgently asked if I could use their bathroom. They said no, and I had an accident in public. Just really embarrassing stuff.

I didn’t know what to do. I was just in pain.

Broden: that’s how I’ve known you since. You like to have a home base where you’re safe.

Tom: the reason I’m talking about all of this is in part because of the psychological damage that comes with shitting yourself.

There were also moments like going for a blood test. I remember once, the nurse stuffed up and there was blood everywhere. I felt so upset. My idea of what being healthy was as a young man – I’d never be that again. I’d always be different. Before, I could drink, smoke and eat whatever I wanted. Now, if I forget my medicine, I was cooked.

After the surgery, I was still in so much pain, and eventually I got an appointment with my specialist. They said I’d need a colostomy bag. I thought about how stupid I was to insist on not getting one, when my bowels clearly didn’t work. As a last resort, my doctor suggested a drug that helped to absorb water in the bowel.

They put me on that.  After years of suffering, pain and depression, it basically started my road to recovery.

Broden: You’ve also talked to me about empathy fatigue.

Tom: Yes, I don’t talk about this much in my personal or professional life for a reason.

When I returned to work at Coles, I was calling in sick all the time. People struggled to understand why, but my boss, and one particular friend, were legends. Any time I called in sick – the immediate response was, “no worries, all good!”

Once, that friend wasn’t feeling well. I told her about how sick I’d been. She stared straight ahead. My boss looked like he almost rolled his eyes. It dawned on me that I was the boy who cried wolf. For three months I’d been calling in sick and talking about how unwell I was. They were over it. I had no judgment for them. They were so empathetic for a long period – they weren’t able to do it anymore. From that point, I’d only rarely bring it up in conversation.

I don’t know if this approach is necessarily a terrible thing. I’ve maintained fun and bubbly relationships in part because of it – because the subject matter is so heavy.  But I’ve definitely repressed part of this experience.

I’ve now mostly been in a state of remission for 13 years, but they’ve recently discovered inflammation in my bowel, where the surgery scars are, which has prompted this chat.

Broden: From where you were 13 years ago – where you thought you were going to die – to where you are now. You’ve toured around the world, made music and scores, bought a house and started a family – it’s amazing.

Tom: I see so much pain and despair from others, but things really can change for the better.

Broden; You’re also in a different situation now. You know so much more, you’re on it early and there are more options.

Tom: For anyone out there listening – particularly younger people – if you were like me and scared of going to the doctor, or scared to have a rectal exam or whatever, listen to me and go to the f***ing doctor.

If we’d acted earlier, it wouldn’t have gotten as bad as it did

Broden: Any advice for yourself?

Tom: I still have ongoing trauma from that year of my life where I wish I’d dealt with it better.

After the surgery, I got better physically, but emotionally I was distraught. I couldn’t leave the house. I thought about ending it a few times.

What I wanted at that time was a partner – someone to date and love. By happenstance, I met a girl who was my guardian angel. She saved my life. I started dating her and shared with her how I was feeling.

I told her I couldn’t share a bed because I’d be so worried about shitting myself in my sleep.

She was like, “and?”

Not dismissively, but in a supportive way.

She said, “shit yourself and we’ll change the sheets. I get diarrhea all the time. So what?”

It sounds so silly, but here was this beautiful woman that I wanted to be with, who was so understanding.

Broden: you used to say things like, “I accept death” in a half joking way. You’d treat a lot of your life like that. I’ve noticed the change, especially with the birth of your son, that you don’t say that anymore.

Tom: When I was at my lowest point, I realised that I could end it if I wanted to.

That actually gave me an enormous amount of peace. I remember calling up Broden and saying, “if I die, at my funeral, you’ve got to perform Purpose from Avenue Q.” I took great joy in this – it’s how I dealt with what I went through for a long time.

Now my prerogative is to live for as long as possible because of my beautiful baby boy.

Support Tom and his team (The Footy with Broden Kelly) as they take on the Live Fearless Challenge!