Hi, my name is Amanda. I am 29 years and I have Crohn’s Disease. My disease itself is
only in the mild – moderate category, but the complications I have from years of
having the disease unchecked have… complicated it.
I was formally diagnosed with the disease on April the 28th 2010 after (what my
specialist predicts) suffering from the disease for 20 years… in silence.
I don’t remember much about my childhood now, but I do remember constant
stomach problems, ulcers on my tongue that wouldn’t go away and having “low
iron” on every blood test I ever had. I also remember GP after GP reassuring my
parents there was nothing “actually” wrong with me that I was simply a child that
didn’t want to go to school. I visited 4 GP’s in those 20 years… not one of them
thought to send me for further testing. In fact, they made me feel like a lunatic… and
they convinced my family that my constant health problems were a sign of
hypochondria rather than considering I was actually ill. They made me feel so
disgusted in myself I started to believe I was indeed crazy and stoped going to avoid
In September 2005, I had what I now know to be my first bowel obstruction. I was on
my first overseas trip when I became hideously sick. I managed to stay away from
any form of doctor, and eventually, it passed. I wasn’t to know at that point it was
the first of many bowel obstructions I would have and the tip of the ice burg when it
came to pain. It was about 12 months before I suffered my next obstruction… I was
so violently ill; my family dragged me to our GP. He looked down his nose at me…
and said I obviously had an allergic reaction to something I ate on both occasions.
He was so convinced I was making it out to be much worse that it was; he didn’t
even give me an additional day off work. My obstructions continued… and they
began to become closer together. I still refused to go back to a GP, “it must be
something I’m eating” I thought. I started keeping a food diary – but there was no
pattern, no logic.
It was December 2009 when my partner and close friends reached breaking point – I
was experiencing all the symptoms of an obstruction every 3 weeks. It took them until
February, after a good friend’s birthday party, to convince me to go back for more
mental torment. Back I went on February 21st 2010. I was forceful with the doctor – I
think the constant illness had stopped me looking at them like “God’s”… the sad
thing is, a lot of people see them like that. Sadder still, I think some doctors
themselves that way. He gave me the same attitude I always got “nothing serious
can possibly be wrong with you”. He diagnosed me with Giardia – a parasite, but I
hadn’t been to a “problem area” for them… ever. When I protested, he huffed and
gave me a referral for a blood test – he decided not to bulk bill this test, because he
was adamant I had Giardia. I took the treatment for the parasite and went for my
test. It became blatantly obvious it was not Giardia when I became violently ill just 4
days after the “treatment that would end my problems”. I returned to the GP my
blood tests were back and they showed extremely low iron and vitamin d. He
dismissed them, told me I wasn’t eating right and to take some vitamins… I told him
about my continuing pain and problems, he grunted and threw a referral for an
abdominal ultrasound at me, again refusing to bulk bill it.
I went for the ultrasound the next day, on the table the operator informed me that I
had a “thickened bowel wall” when I asked if that meant cancer, she nodded and
said “possibly”. I was almost destroyed, that afternoon I had reached my lowest
point. I was depressed and tired and just wanted some answers. My next
appointment was the very next day – he read the report, it said noting about Cancer.
Instead it mentioned a disease I had never heard before – IBD. My doctor would still
not concede that I was sick – but ordered a scope, at a private hospital – we were
uninsured. I will remember the last words that GP said to me until the day I die – on
the way out the door, he said in front of a full waiting room, “harden up, I still don’t
think anything serious is wrong with you”.
I went home that night – desperate for answers and googled IBD – I know you
shouldn’t but I needed to know. I looked at Crohn’s Disease first… by the end of the
second paragraph, I was in tears…. I knew at that moment, I had Crohn’s disease… It
explained my entire life to date. Before it was official though, I needed to have a test
I was terrified of… a Colonoscopy. I rang up quickly – thinking if I could get it done in
a few days time it wouldn’t be so bad – you know like ripping a bandaid off? Alas
because my GP had blamed my diet for my iron and ordered me to take
supplements – I needed to wait two weeks before I was right to go.
In the grand scheme of things – the scope was nothing… a walk in the park
compared to what I have been through since. When they woke me up – the
specialist who performed the procedure was there… he opened his mouth, but sound
came out of mine. “It’s Crohn’s Disease” I said without shifting my gaze – he nodded,
handed me a referral and walked away. I told my partner when he arrived… I wasn’t
upset… I just was. I scheduled the SBS for the next day… it took 5 hours to perform
because my bowel was so slow and so badly structured from years of abuse. I swear
to whatever you believe in – I will never do that test again. After all the testing,
doctors’ appointments, bloods, and the whole shebang – I was $1900 out of pocket,
just 5 months after moving into my first house I had bought with my partner. I later
found out every test could have been bulk billed and we would have been spared
the financial hardship – by that stage though, I was too numb to be angry.
I was 6 weeks before the GI could see me again… I was still undedicated and flaring
– so in-between times I obstructed again. When I saw him he very flatly told me how
sick I was and that I would need surgery – perhaps soon if the medication he was
prescribing didn’t work. He told me about a medication that would be perfect for
me. Then he told me the price, $285 a month – at that time, I thought for the rest of
my life (he didn’t explain things well). I took the prescription thinking we were going
to have to sell our house. I also took a referral for a specialist – I protested, just seeing
that as him booking me into surgery. I was wrong.
I spent the next 3 months scratching together money to afford the expensive
medication. I woke up for three months thinking “I am not sure I want to keep waking
up if this is how I am going to feel every day for the rest of my life”. I dragged myself
to work and faked my way through every day while people who had no idea what
they were saying kept congratulating me for having Crohn’s rather than Cancer – I
wish I had the balls then I have now, because I would have told them exactly what
they were congratulating me for.
My life changed, for the better, the day I met the first doctor in my entire life to just sit
down and talk to me… he examined my records, listened to my story – hell he even
wrote my old GP a letter that really dressed him down… I talked to him for going on 2
hours – he didn’t look at his watch once… he has been my saviour… both medically
and mentally, I don’t know where I would be today without him. Being an outpatient
I was able to access medication cheaper – for the first time in a long time, I breathed
out a sigh of relief – after meeting that man and the staff in Endoscopy at the hospital
I knew I was going to be okay.
Here I am today – still no surgery. The medication worked to reduce the swelling in
my bowel, in fact, I have only had one obstruction in the last 18 months and that was
exactly 12 months ago yesterday.
I know that if you have Crohn’s Disease, a good doctor can make a monumental
difference. There isn’t a day that goes by that I don’t tell people how glad I am to be
under the care of Gold Coast hospital. The people there are amazing. My partner
stayed with me while it felt like both our lives were falling apart… he is my hero. I was
broken mentally and medically and I was breaking us financially, but he stayed by
me – we are still together today and planning on getting married in August.
If I could give advice to anyone – it’s to trust your own body and instincts. If you feel
sick – force your GP to listen to you, force him to test and demand they are bulk
billed. People can be seriously ill – IBD is not a joke and won’t just go away.
Sometimes I sit and think about what I would have been like, how sick I would have
been if they had of caught the disease earlier. Who knows, right? I know after the
last 2 years of my life, there is nothing I can’t handle and nothing I can’t do. Mentally
I have never been stronger – I guess I have Crohn’s to thank for that?