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'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 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.

Thank you.


fromsophiesview said...

You have reached one person already ~~ me! I knew your son wasn't well last year and honestly thought things were much better. I know what stomach upset and bowel problems are all about ~~ there I said it! I've had stomach and bowel issues all my life I think it was inherited from Mom and Grandma! I won't blame anyone because they aren't here to defend themselves. I eat the best I can now since I turned 50 ~~ 13 years ago. I will spread the word for you, your son and family without hesitation!


Anonymous said...

Great post!!! Understand and empathise with every word (as you know)! Blessings to you and yours, love Annie xxoo

Farmers Wifey said...

Thank you Miss Sophie and your dads for caring, yes spread the word xo

@ Annie thinking of you and THANK YOU for being there for ME xo

♥.Trish.♥ Drumboys said...

Thinking of you and your brave boy.
Any chronic illness is hard to deal with , let alone when you are 9yrs old. As a mum we worry so much but you are doing an awesome job to search for the best treatment and management.

Mimsie said...

I remember the anguish you suffered last year when the diagnosis was made. You are a wonderful and caring mother and anything you can do to ease the lad's problem you will do. Thinking of all of you and sending positive vibes your way. xx

Farmers Wifey said...

Thanks Trish, it certainly is an ongoing thing, I have to look out for him as his mum x

Farmers Wifey said...

Mimsie, yes it was a hard time wasn't it, all so very new. Thank you for thinking of me, I do so appreciate it xo

LisaW said...

Thank you for writing this post Michelle. Aside from what I've heard from you, I really know nothing about Crohn's. Don't ever doubt that you're an amazing mum...your son is getting the best of care thanks to you.

Farmers Wifey said...

Thanks Lisa, that's the thing, getting it out there, awareness, understanding xo

Norlin said...

I know absolutely nothing about Crohn's disease Michelle, and it sounds like something that is hard as an adult to cope with let alone a child. Thanks for sharing this. And you're so strong to go through this hurdle with your boy. xx

Farmers Wifey said...

Thank you Norlin x hopefully it will become more of a focus for sufferers and their families x

Denyse Whelan. said...

I remember the time of his diagnosis... Such a huge shift in your family's world in the lead up to moving into the money pit. Michelle, I love how to do all it takes to make it as right as it can be for your son. As you do for all your family. But no-one expects their child to be diagnosed with a chronic & life long condition. You have made marvellous connections to find your way to best help your son. Thank you for again making more of your community know about IBD.
Denyse x

jeanie said...

Sorry to hear that your son got this diagnosis, FW - but great that you do have the knowledge and know his strengths and are doing all you can for him.

Farmers Wifey said...

@ Denyse, love your support, thanks lovely friend xo

@ Jeanie, it was a shock, but we are moving forward, very blessed with what we have xo

Unknown said...

Hi, I clicked over from the BlogHer group. I didn't realize that Crohn's disease could affect children, so I'm glad to have a better understanding of the disease. I was tested for it when I was younger, but only years later did I find out I have coeliac disease, which is treatable only by diet.

Your little guy is brave.