- Joined
- Jun 19, 2010
- Messages
- 15
G'day! I'm new here and thought I'd introduce myself.
35 year old lass diagnosed after a year of illness at the age of 18, funilly enough, during Crohns awareness week in Australia! And even wierder, I find out that the head office of the Crohn's and Colitis association of Australia is just down the road from my house!
Anyway, as a young girl in the last 2 years of highschool, I experienced severe weightloss, severe stomach pain, diarrhea, vomiting and not able to eat food. This resulted in accusations by boh doctors and senior staff at the school, regarding the state of my mental health. They suggested it was all in my head, that I was bulemic and anorexic!
Then came the abcesses and fistulas, which thankfully lead to a colonoscopy which lea to a diagnosis... If it wasnt for the abcess, I don't know how long it would have taken them to decide to perform a colonoscopy!
Then there is the information overload. First, I'm so thankfull that I really aren't crazy, that they found something, and now I can work toward getting well (or so I thought)... then coming to terms with my "dis-ease" with the word disease! Then swimming through all of the information that comes with a new diagnosis... while trying to study for my end of year exams!!!
******Edited section****
I forgot to mention I had a terminal ileum resection when I was 20 and the crohns came back immediately. But not all was lost, I managed to begin Uni off campus for that year, then on campus for the rest, and even with shitty flare ups for the entire duration, I managed to get my degree! whoop whoop!
*********************
It turns out, I educated myself on Crohn's disease so much so, that my doctor was unaware of many of the treatments and even clinical trials that were available. At one point I was going to fly to the States to get a medication that wasn't available in Australia yet. My doctor was perplexed. He coulndt understand why an 18 year old girl, with a massive moon face from Corticosteriods would go to such lengths for better quality of life! That's when the penny dropped.
I had to get a new doctor.
It turns out I ended up moving to the USA, finding a stellar Crohns specialist, found out that I acually have UC Crohns, had a new action plan for medication (and several back up plans). And I've been pretty well ever since. (the past 7 years - woohoo to that).
There are still daily ups and downs but they are completely manageable. If I get a cold or flu, my Crohns plays up, if its the monthly cycle, my crohns plays up etc.
Also, after so many years of vomiting, my teeth are literally flaking away so I'm undergoing a lot of dental surgery right now, and the recovery from that too affects my crohns.
So thats where I am and if I've learnt anything, put yourself first, schedule rest days, dont over do it, eat healthy foods (when you can eat), and put yourself first. Find a great doctor - dont settle for average or your health will not have a chance, and to educate yourself constantly on new developments concenring your disease.
Anyway, glad to be here, to find some "bum buddies" and to find a place where discussions about bodily functions of any kind are not embarrassing!! So G'day everyone! Looking forward to chatting with you!
35 year old lass diagnosed after a year of illness at the age of 18, funilly enough, during Crohns awareness week in Australia! And even wierder, I find out that the head office of the Crohn's and Colitis association of Australia is just down the road from my house!
Anyway, as a young girl in the last 2 years of highschool, I experienced severe weightloss, severe stomach pain, diarrhea, vomiting and not able to eat food. This resulted in accusations by boh doctors and senior staff at the school, regarding the state of my mental health. They suggested it was all in my head, that I was bulemic and anorexic!
Then came the abcesses and fistulas, which thankfully lead to a colonoscopy which lea to a diagnosis... If it wasnt for the abcess, I don't know how long it would have taken them to decide to perform a colonoscopy!
Then there is the information overload. First, I'm so thankfull that I really aren't crazy, that they found something, and now I can work toward getting well (or so I thought)... then coming to terms with my "dis-ease" with the word disease! Then swimming through all of the information that comes with a new diagnosis... while trying to study for my end of year exams!!!
******Edited section****
I forgot to mention I had a terminal ileum resection when I was 20 and the crohns came back immediately. But not all was lost, I managed to begin Uni off campus for that year, then on campus for the rest, and even with shitty flare ups for the entire duration, I managed to get my degree! whoop whoop!
*********************
It turns out, I educated myself on Crohn's disease so much so, that my doctor was unaware of many of the treatments and even clinical trials that were available. At one point I was going to fly to the States to get a medication that wasn't available in Australia yet. My doctor was perplexed. He coulndt understand why an 18 year old girl, with a massive moon face from Corticosteriods would go to such lengths for better quality of life! That's when the penny dropped.
I had to get a new doctor.
It turns out I ended up moving to the USA, finding a stellar Crohns specialist, found out that I acually have UC Crohns, had a new action plan for medication (and several back up plans). And I've been pretty well ever since. (the past 7 years - woohoo to that).
There are still daily ups and downs but they are completely manageable. If I get a cold or flu, my Crohns plays up, if its the monthly cycle, my crohns plays up etc.
Also, after so many years of vomiting, my teeth are literally flaking away so I'm undergoing a lot of dental surgery right now, and the recovery from that too affects my crohns.
So thats where I am and if I've learnt anything, put yourself first, schedule rest days, dont over do it, eat healthy foods (when you can eat), and put yourself first. Find a great doctor - dont settle for average or your health will not have a chance, and to educate yourself constantly on new developments concenring your disease.
Anyway, glad to be here, to find some "bum buddies" and to find a place where discussions about bodily functions of any kind are not embarrassing!! So G'day everyone! Looking forward to chatting with you!
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Hope to see you around the forum..it's a great supportive place!
