May 19, 2013
Crohn's and Colitis Awareness Month
You may not know that May is Crohn's and Colitis Awareness Month. Specifically today, May 19, it is World IBD Day. That's Inflammatory Bowel Disease.
Up until last August, I didn't know anything about Crohn's Disease. I had three healthy children, or so I thought, and I supported charities such as the Muscular Dystrophy Association and SANDS which I still do because I have a personal connection to them.
When my little boy was diagnosed with Crohn's Disease last year, he was 9 years old. A simple blood test to check his iron levels led to four trips to Brisbane and lots of procedures and tests at the Royal Childrens's Hospital. Questions, uncertainty, fear and sadness took over as we realised that our child was sick. Where the hell did this come from?
I mothered my kids the same, fed them the same foods, nurtured them all exactly the same, yet my middle child had this thing called Crohn's Disease? An inflammatory bowel disease. Not a boutique disease that people are happy to talk about, rather something that is spoken in hushed tones because it is to do with digestion, intestines, poo, blood, weight loss, cramps and dodgy toilet habits.
And my reference above to boutique diseases, is written with the utmost of respect, what I am saying is that Inflammatory Bowel Disease is not one that has a high media presence.......therefore this month is so important to spread Awareness and understanding about Crohn's Disease and Ulcerative Colitis.
There is no cure. They are chronic, inflammatory conditions that are characterised by periods of good health (remission) and flare ups, and can differ from person to person - there are so many variables.
So how are we doing? After the initial shock, I decided to find out as much as I could about what we were dealing with, and to work towards the goal of keeping my son as healthy as possible. There are still so many unanswered questions and I suppose with time, they will be answered. I worry all the time.....about the medication I am giving him....what it is actually doing to him besides keeping the inflammation away from his little body.
I worry that he is not growing, that he is pale, that his body aches and he complains about his joints being sore...his legs, behind his knees, his wrists. I worry that he gets sunburnt easily and gets headaches because of the medication. I think about his immune system that is now compromised, and I try to keep him away from coughs and germs, but it's not easy. I look at him sometimes and wonder was it anything I did (no)...
If he is tired or takes too long in the toilet, I worry.....it's a constant thing. It's called being a Mother.
However, there are some things that I do know......
* my son is the strongest, bravest kid who just accepts this situation
* Crohn's Disease does not define him. He is a footballer, an ace Lego builder and is quite handy on the Ipod (minecraft and Star Wars are his thing)
* his family adore him
* he has tonnes of friends
* he's hilarious and cracks me up
* knowledge is power
* things could be worse
* support is precious
* we all have good days and bad
* a good, balanced diet is a given
* medication is a necessary evil
* I cry easily and often
I'm looking into alternative remedies to help keep my little guy healthy, and to ensure the best chance of a prolonged remission. It doesn't take away the need for medication, but rather work side by side..it can't hurt can it?
And the best, most valuable thing of all that I have discovered is the support and kindness from the IBD community. From this forum to a couple of Facebook groups who helped me today to some special people who are living with Crohn's Disease or Ulcerative Colitis whether it be themselves or their child...Jake, Stacey, Annie, Karen and Stephanie.