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Wednesday, May 19, 2010

World IBD Day

May 19th marks World IBD Day, and as a person who lives with IBD I thought I would share a few of my thoughts...maybe more for myself than anyone else.

It has been sixteen years since I was diagnosed, but I know I have lived with Crohn's Disease for most of my life. Now, while I am remission I feel that I can live with this disease, but, when I am in the midst of a flare up I don't know how I can go on. On several occasions I have been hospitalized and spent weeks at a time away from my children and family. Many times I have begged my doctors to give me a colostomy just to end the cycle.

All three of my children were considered high risk pregnancies. For each child I spent a chunk of the pregnancy taking oral steroids, which scared me with each and every pill what I was doing to my unborn child.

Crohn's Disease is more than just the physical effects on your colon, I have suffered two doubts of erythema nedosum (which is a painful bruise-type sores which you get on your lower legs). Each time I was unable to get around for weeks due to the pain.

Because of Crohn's Disease I have taken so many steroids, that my bones are weakened. When I had my third child I suffered a broken bone in my back which needs to be fused, however, doctors won't do it because of the risk of my whole spine crumbling.

While, I try every day to accept the things I can't change. I think the biggest effect of IBD is the fear I live in watching my children every day. Each time one of my kids become sick with flu like symptoms, or if they get diarrhea my mind races with the fear that they may become ill with IBD. This fear seems to rule my life and I continuously ask my kids to tell me if they get cramps.

Please join me in pledging your support for a brighter future for people suffering from IBD. For greater understanding of what it means to live with IBD day in and day out.

I have hope for a bright future with more acceptance and understanding for Canadians with IBD.


Sweet Tea said...

What an ordeal(s) you have lived with. So glad there are meds to treat it but wishing they could find a cure for this. Thanks for the information and may God bless you with continued remission.

sweetjeanette said...

oh goodness Pam! I had no idea you had Crohn's disease! I know that can be very painful. Thank goodness you're in remission now.
btw, I've been missing you around my blog - I love it when you visit and comment! Thanks for commenting today!

jeanette from www.sweetjeanette.com

Randi Troxell said...

my goodness .. i had no idea either.. and am so sorry you have had to go through this.. BUT.. reading this, i think you've been brave and kept your head up when some others of us would have faltered...

about to follow your link.. and know, that now that i know this.. you'll be in my thoughts...

Katy said...

Pam, I'm a newer reader and thank you so much for your honest post about IBD. I too have Chron's Disease and understand the pain and ordeals the disease can bring to patients and their families.

I'm so happy your children are healthy and that you're in remission!

I, like you, was diagnosed at a young age and still sometimes struggle with acceptance of what it really means to live with a chronic illness.

Thanks for the pledge link and for telling your story! Much love!

Cascia said...

That is a scary disease and you must be very strong for going through all of that. Congratulations for being in remission! My sister-in-law's mother also has Chron's Disease. Until reading this I didn't realize how it can really effect your life.

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Jane In The Jungle said...

Oh Pam. I know a number of people who are affected with Crohn's, my heart goes out to you!!

Nancy said...

sounds horrible! have you ever tried changing your diet to help with symptoms? i have a friend who was diagnosed with both of these things who is gluten intolerant and once she eliminated this she became asymptomatic. I thought if that helped her think of how much it would help me? Pam, its like night and day. Worth a shot anyway.