18 years of living with Crohn's disease.
14 years where I have thought about her.
14 years of pain with which I had learned to live.
14 years of unremitting back pain and the toilet.
14 years of body shape and weight below average.
14 years of slow and insidious progress of the disease
It's amazing what one can endure when we hide our face.
But then, 2005 was the year that changed my life, where my landmarks changed.
The disease has engulfed my large intestine and has contaminated nearby organs in contact.
Then I got to know the operating times 1 ... 2 ... 3 times ... times 4 times
I thought she would win but no!
I decided to wring its neck.
I asked the surgeon to remove all the sick parts... My entire colon has been the victim.
Ileostomy 2 years with I love you a little, a lot, not at all!
4 years since my gut has pointed the tip of its nose on my belly.
4 years since I "ileostomy or pocket ... Yuck! Even the name is scary.
4 years lifting the inside of a particular kind, gave me a smile.
Of course, I cried a lot, I had to adapt to my new body.
But I am stronger today.
I learned to live and not just survive.
The family dynamic has been disrupted but it has resisted. I would say it has increased!
I saw with the other, present and hope and with myself.
Should we talk about this disability and why?
The difference is scary, it puts us face to face with our own inner terrors.
I am a nurse in a hospital and yet I am faced with incomprehension.
One would have thought that here more than everyone was clear about disability and well not quite. There is a way to go.
However, perhaps this is the price of invisibility. It is difficult to admit to others that one can be both a caregiver and effective while being a person. It's my gut that was removed, not my skills!
The ileostomy is a part of me then?
The world really turns upside down!
This world tour will, I hope, finally throw some ideas.
To show that it is still possible to achieve great challenges.
To show that a person with a stoma is more than a pocket.
Show a positive image of this crippling disease.
To get people to move forward and leave their homes.
Restore their taste for adventure and dreams in each of us,
To share a special family adventure through the world.
You will have a new life, that is much better than never moving far from the nearest toilet. If you are otherwise healthy, your bag can never stop you from doing whatever you want.
There are restrictions, I find that communal showering is embarrassing, but I always wear shorts and change with a towel around me, just like on the beach.
It does dent your body image a little, but the pluses outweigh the minuses if you have had long periods of illness that devastate your life.
I had UC from age 20-28, and have had a bag for 35 years.
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