This is a departure from the usual content of this blog, but I feel the subject warrants it. Earlier this week news broke of a potential crisis in the gastroenterology service at Our Lady’s Children’s Hospital Crumlin. Specialists there want to highlight the fact that the waiting list for some gastro investigations and tests, for diseases like Crohn’s and Colitis as well as Coeliac, is as long as 18 months. Meaning, every day, children all over the country wait in vain for a simple test which could lead to diagnosis and treatment. I am not a parent, but I do have Crohn’s Disease. And I remember well the horror of being on a waiting list, in pain and afraid.
ONE of the things they don’t tell you about having Crohn’s Disease is that sometimes, particularly at the start, few people will believe you when you say you feel dreadful. Again. Because for the most part Crohn’s is invisible and you’ll look fine.
They also don’t tell you that people will whisper behind your back at your sudden and dramatic weightloss as the disease progresses, hushed conversations about crash diets and speed.
Or that doctors will sigh wearily, when you explain that you vomit after every meal, and ask if you’re actually making yourself sick, suggesting you have bulimia.
And they certainly don’t tell you that at times, when the illness really takes hold, you may soil yourself. In public.
Crohn’s Disease is a chronic, incurable inflammatory disease of the gastrointestinal tract, so can occur anywhere between the mouth and the anus, though generally manifests in the small bowel or colon.
Symptoms include vomiting, constant diarrhea, anal bleeding, fever, pain, weightloss, fistulas, liver inflammation, mouth ulcers, bleeding gums and a whole host of other problems.
The disease can range from mild to severe and often goes into remission for long periods of time. People with Crohn’s can live full, healthy and active lives and with medication or surgery their disease can be managed very successfully.
But, at times, it is no picnic.
A story I tell about waking up from a colonoscopy to find a male nurse heartily wiping lubricant from my behind and telling me he recognised my…face…from my home town regularly draws gales of laughter from friends and family.
The story about the time I crawled on my hands and knees to the toilet in my office, because I was bent double with pain, and vomited blood before passing out briefly, however, isn’t so funny.
I was diagnosed in May 2002 following nine long months of sickness, pain, tests, more tests, waiting lists and yet more tests. During those nine months, because doctors were unsure what was wrong with me, I received no treatment and simply had to suffer through.
I had started to feel unwell the previous September, throwing up every time I ate, no appetite, running to the loo every five minutes, classic symptoms which terrified me, as I knew exactly what they pointed to.
My eldest sister had been diagnosed with Crohn’s 12 years earlier and had gone through the exact same thing, so when it started happening to me, I knew. I knew I had Crohn’s, I just had to wait for the doctors to find it.
At 22 though, thankfully, I was adult enough to be able to wait. I could understand what was happening to my body and managed to cling on by my fingernails, knowing that eventually help would come.
A child isn’t so lucky. A tiny child has no idea what is happening to it, what the pain is, why suddenly every trip to the loo is a living nightmare. Or why they have to wait months and months and months to be tested and start treatment
What is happening at Crumlin Children’s Hospital is nothing short of scandalous. So long are the waiting lists for gastrointestinal tests and investigations for conditions like Crohn’s, Colitis and Coeliac Disease that tiny children are being put through hell on a daily basis.
I can’t imagine a child going through what I went through.
Not just the pain and the vomiting and the diarrhea, not just the embarrassment and the fear and the need to be within 20 paces of a bathroom at all times – but the sheer mind-numbing, crushing, constantness of it.
When Crohn’s has you in its grip, particularly before diagnosis and during those first few bewildering months after, there is no let up.
It is never-ending, the pain simply doesn’t go away and I know personally, during that very dark time, I often prayed for it, all of it, to end.
It is indefensible that any child should have to go through that. Is this what our country has come to? That tiny children, sick children, are left to languish for 18 months before getting access to a simple 20 minute test? A test that could get to the root of their problem and give them their life back?
For a country that only last week showed off the brightest and best that Ireland has to offer, on a world stage, this serious shortfall and backlog in our health system is shameful.
It must be addressed as soon as possible. It may make no difference but I will be writing to my TDs and political representatives and perhaps, if you feel as angry as I do, you might too.
A final note – I do not wish to scaremonger. Nor would I wish someone recently diagnosed with Crohn’s to come upon this post and be scared silly by what I have written. Once I was diagnosed and found a medication to suit me I started to get better. Much better. I have received, and continue to receive, excellent care in the public health system, despite the waiting lists, and currently I am well and happy. I have a normal, full, wonderful life. Crohn’s is very treatable, it is not a life sentence and medication and treatment continues to come on in leaps and bounds. What I wanted to do with this post was to give a glimpse of the harsh reality of being ill and being on a waiting list. As I said, it is no picnic