I was diagnosed over Christmas 2007, emerging from a 7 hr op in ICU, having my bowel in a lab, and would you believe it - a group of Carollers singing away the joys of the season. I would loved to have been with it enough to have thrown something rather unpleasant in their direction. However, I have learned over the past 4 years and two other stoma repair jobs, countless rehyrdration admissions that you have to make the best of a really bad situation. My husband keeps me laughing, even making jokes at the worst possible occasion.
As we had never heard of "Crohns" and thought "Bags" were for really old people, it came as a bit of a surprise to realise that tiny tots (with Hirschprungs) are subject to the same awful situation. I have had a really good life and yet these babes have to put up with both nappy and bag changing, besides being very new to the world.
Life's not fair. We are all agreed on that. So, do something about it! We did. My husband and I researched for 3 years on everything we could find worldwide on crohns and ostomies and wrote a 440 page resource book UNWANTED BAGGAGE, which contained everything we needed to have known when I was lying in the ICU (and some great cartoons). All royalties are being donated to the ostomy charities in the UK.
We then took into consideration those who could not yet read and created a gang of home made ostomy puppets called the gastronauts and we have begun their video adventures on line on our new website, thebowelmovement, - All kids get a free certificate of bravery under surgery and we are producing a series of free e-books for ostomy kids.
Our lives are now filled up with answering emails from fans and hopefully making life a little more amusing than it was before. Despite being bedbound (had a stroke under first surgery and then crohn's joined in and attacked my joints), I can still find something to laugh at every day. My motto is if you see someone without a smile, the least you can do is give them one of yours. I receive weekly chemo (methotrexate) on the cancer ward and know that everyone else wandering around with IV's has it much worse than I do.
Knowing you are not alone helps. Join a local crohn's association and have some fun. I have since learned to do wheelies in my electric wheelchair but broke my husband's foot in landing hard - woops. Fortunately, he saw the funny side and laughed all the way to A&E. However, he has since confiscated my chair's remote control, which has made the hospital a much safer place on my Friday trips for chemo. (By the way, Methotrexate may be a last ditch control for crohn's but it really works. Only some very minor side effects but the relief from pain is so good. I now understand why they use it for Rheumatoid arthritis as well. I have also been able to reduce my morphine intake by 50%. ). bio ends!:ylol:
As we had never heard of "Crohns" and thought "Bags" were for really old people, it came as a bit of a surprise to realise that tiny tots (with Hirschprungs) are subject to the same awful situation. I have had a really good life and yet these babes have to put up with both nappy and bag changing, besides being very new to the world.
Life's not fair. We are all agreed on that. So, do something about it! We did. My husband and I researched for 3 years on everything we could find worldwide on crohns and ostomies and wrote a 440 page resource book UNWANTED BAGGAGE, which contained everything we needed to have known when I was lying in the ICU (and some great cartoons). All royalties are being donated to the ostomy charities in the UK.
We then took into consideration those who could not yet read and created a gang of home made ostomy puppets called the gastronauts and we have begun their video adventures on line on our new website, thebowelmovement, - All kids get a free certificate of bravery under surgery and we are producing a series of free e-books for ostomy kids.
Our lives are now filled up with answering emails from fans and hopefully making life a little more amusing than it was before. Despite being bedbound (had a stroke under first surgery and then crohn's joined in and attacked my joints), I can still find something to laugh at every day. My motto is if you see someone without a smile, the least you can do is give them one of yours. I receive weekly chemo (methotrexate) on the cancer ward and know that everyone else wandering around with IV's has it much worse than I do.
Knowing you are not alone helps. Join a local crohn's association and have some fun. I have since learned to do wheelies in my electric wheelchair but broke my husband's foot in landing hard - woops. Fortunately, he saw the funny side and laughed all the way to A&E. However, he has since confiscated my chair's remote control, which has made the hospital a much safer place on my Friday trips for chemo. (By the way, Methotrexate may be a last ditch control for crohn's but it really works. Only some very minor side effects but the relief from pain is so good. I now understand why they use it for Rheumatoid arthritis as well. I have also been able to reduce my morphine intake by 50%. ). bio ends!:ylol:
