The Crohn’s Nation Facebook page, exists to provide useful information to Canadians living with Crohn’s Disease through their families and their friends. I had gotten in touch with Charlene, Mother of Sam a IBD sufferer, to share their story:
Sam was born in 1994 in Calgary,
Sam was a active child he loved the Rockies and learned to ski at age 3! the family also did a lot of camping and hiking.
In 2000 the family moved to New Jersey, they skied throughout the American northeast. Sam started playing America’s game – baseball. He also played soccer on a travel team.
In 2003 they moved to Ontario to be closer to family, and Sam started grade 4. He joined the baseball team there and it became his main sport. Every year they would take a family ski vacation somewhere in Canada or the US. Sam loves western skiing she says.
Grade 5 is when Sam started feeling unwell. He would get stomach aches and have to spend a lot of time in the bathroom. they got a referral to see a pediatrician. Charlene says: “The first time I heard about Crohn’s was from the pediatrician in our initial appointment,” the pediatrician told them “It can’t be Crohn’s because look at him, he’s so healthy”. They spent almost a year getting allergy tests, removing dairy & wheat as Sam got steadily sicker. He lost a lot of weight and the pediatrician sent us to a pediatric GI. the GI only examined Sam for less than 5 minutes and said “I know you have Crohn’s but we’ll do the endoscopy and colonoscopy to make sure”.
October 2005 Sam had the scopes. they saw ulcers all the way down his esophagus and the granulomas & inflammation in the large intestine, plus an abscess. Charlene says: “Looking back I regret that I didn’t push for more tests right away, and that I didn’t do research on Crohn’s as soon as I heard the word. I could have saved Sam a lot of discomfort and possibly some permanent damage.”
By the time of Sam’s diagnosis he was very ill, he was hospitalized for about a week, put on a number of oral and subcutaneous medications. He was hospitalized 2 more times that Fall.
The family thought following a less-processed diet would help Sam’s symptoms. For about a year they cut out dairy, sugars and wheat. “It’s pretty hard to explain the need for a different diet when you’re 11 years old”. Once Sam was stabilized they loosened up with the diet. Sam now knows what his trigger foods are so he can eat a wide range of foods.
A year after Sam was diagnosed the family still didn’t know to much about IBD. “He developed terrible pain in 1 of his ankles” They thought he must have somehow broken it playing baseball, At the hospital they couldn’t see anything broken on the x-ray but Sam was in a lot of pain the doctors decided it was fractured and they put a cast on. A few days later the pain switched to the other ankle. “So we clued in”. That’s when they learned IBD can cause terrible joint pain like rheumatoid arthritis. There were days Sam couldn’t walk. “Between the gut pain and the joint pain, there were times we went to the emergency so he could go on morphine”.
Dec 2006 Sam started the medication that he is still on today it mostly keeps his Crohn’s in check, Sam’s case of Crohn’s is pretty severe therefore he is on the maximum dose, as frequent as is allowed.
Sam is amazingly focussed and persistent. Despite the pain, Sam still played baseball very seriously and travelled with the baseball team.
As Sam went through high school he stepped up and began taking care of his IBD himself , “They (the doctor’s) put it on him to take control of his care.”
Sam decided he wanted to go to UBC. Charlene says: “We worried about that, not just because of the CD but because it’s so far away and we would miss him”. But, Sam is very determined. “He wanted a good school with a great lifestyle”.
“Now Sam’s in 2nd year at UBC. He’s incredibly busy and challenged like never before. He’s managing to do well at school, while enjoying all the hiking and skiing that BC has to offer. Despite being under a lot of stress, his health is better than ever. There’s something about Vancouver that makes him feel better.”
When he was first diagnosed , did you know what IBD was or was it the first time you had ever heard of it?
Had never heard of it
How did you feel when he were diagnosed , Were you scared , relieved , confused ?
Some relief since he finally had a diagnosis and there were treatments. But very scared about what this would mean for the rest of his life since there can be so many complications.
What does his diet consist of? In your opinion, is diet a manger fact with IBD? , on a scale of 1 to 10 (10 being very much so ) where would you rank diet in the importance of IBD management?
I think diet is an 8. How can a disease of the gut not be affected by what we put in our guts? Sam’s doctors dismissed our restrictive diet (specific carbohydrate diet) and thought it didn’t matter. There has been a big increase in IBD in North America at the same time our diets go to more processed foods.
Do you “as a IBD care giving” have someone to turn to? family , friends to vent or were you or did you feel alone?
My husband, my friends and my parents have all been supportive.
Does he have a “pain management routine”? a system of things he do to deal with pain?
Besides curling up in a ball and watching TV? This isn’t as much of an issue now that it’s under control. When he was younger we did a lot of visualization. I’d talk him through a baseball game and try to get his mind off it for a bit.
Are your/his friends/family understanding of his IBD? how do you feel when the are not understanding ?
They are very understanding.
what is the biggest thing that IBD has held you/him back from doing, is there a specific event that stands out?
As a kid, until his disease was under control, he wouldn’t go to sleepovers.
Does he feel guilty when you can not attend events due to his illness? in your case , do you ever feel upset when he can not attend a family event?
Didn’t feel guilty or upset – it was just a fact of life that if he wasn’t well he didn’t go. If it was a family event then one parent and our daughter would go.
How do you deal with the ignorance that surrounds IBD?
It hasn’t been a factor. If somehow it comes up and people ask I tell them about it. Most people think it’s like IBS where it’s a vague undiagnosed disease. So I explain about it being autoimmune and related to psoriasis or rheumatoid arthritis.
Having you or him ever felt like giving up? how do you pull your self out of those feelings?
That’s not an option when it’s your kid. Might have been different if it was me or my husband.
In three words, try to describe your experience with IBD?
Unknown, territory. (sorry only 2 words)
Now three tip you’ed give to a newly diagnosed person:
Write every trip to the doctor, every new medication, your symptoms and days missed from school/work in a diary. Keep pushing your doctor for new treatment until you have something that is working. Our experience is that it takes time, but you can push it into remission. If you have symptoms that affect your quality of life you need to raise those. If you are seeing a GP, get a GI.
Charlene final statement :
Don’t give up! Understand what foods and conditions trigger your flare ups. For Sam sometimes it was heat and lack of sleep. Then manage your diet, your triggers and your healthcare. You can handle this!
I am glad to see a mother so supportive of her son , he is lucky to have you! good luck on you journey Sam , stay strong, stay determined and know , as well as your family, you have the full support of the IBD community backing you all the way!
For an update on the awareness video ” WE Have IBD” please Click here
Contact/follow me at:
Google plus: +MerandaRoben