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Newb to Crohn's, sick of combing the internet

Hi,
I'm a 23 year old from Sydney, Australia. Found out over the weekend I have "mild" Crohn's - had a gastroscopy and colonoscopy which found two small ulcers at the end of my small intestine/beginning of my large intestine.

My mum, dad and sister all have/had ulcerative colitis - my sister's was so severe, having been on prednisone since a teen (now 25) it came to a head last year when she was hospitalised. She opted to have her whole large intestine removed over a series of 3 surgeries because she was pretty much at risk of death. She's blissfully UC free now, aside from some surgical complications with her detached rectum she has some snazzy scars and a new lease on life.

i guess my family always thought that i would be the IBD free survivor, but about a month ago i had rectal bleeding - no diarrhoea or any other typical symptoms. given the fam history I headed straight on over to the doc to check it out.

i'm trying to think of what to ask my doctor in my follow-up appointment - I guess I'm mainly wondering now, given that it's a chronic illness is Crohn's likely to progress in severity over time? Up until now it has not affected my quality of living. I'm also quite worried as there are bigger implications that don't come with UC, like fistulas, blockages - not much of an option of intestine-removal surgery. i also want to avoid steroid use as much as possible, given what it put my sister through she was at risk of bowel cancer by the end. i'm also here because my family isn't handling it too well - they largely haven't acknowledged it or offered much comfort - i guess they're as shocked as I am.

if anyone has any suggestions about getting through the initial diagnosis, and how to not let a chronic illness diagnosis get you down i welcome your words :)
 
Welcome to the forum from a fellow Aussie!!
With a significant family history, it's certainly sensible to check things out thoroughly.. And on some level I can understand your family wanting to adopt an "ostrich" approach to your recent diagnosis (tho I understand that doesn't help or support you much!!)
Are all your family under the care of a particular GI or hospital unit?
Sounds as though things are fairly mild at the moment. Most important thing is to find a GI who you like, and feel comfortable having a thorough discussion with.
Hope all goes well... :)



HD
 
hello! i've found a guy in Bondi Junction who is supposedly amazing. it's hard taking time out of a new job to go to specialist appointments - but i work in a pretty teeny office so i'm hopeful my boss will be understanding!
i guess it's just a matter of figuring out how to not let this get any worse? my gastroenterologist (who also performed the procedure) said on a scale of 10 i'm about a 0.8, but it was enough to make me start panicking/ go into a google black hole spiral.
I guess my family is living evidence of IBD being genetic :) i guess i'll have to think about managing stress and trying to bring back some control to my body when the going gets tough.
 
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