Crohnie new to here

[Digits]

Hi all..Im darci, and im from Alaska. I was diagnosed when i was 8, and im about to celebrate my 20th birthday in april.

My diagnosis was a difficult one, i was living in a little town called Valdez here in Alaska, and the nearest hospital was 350 miles away in Anchorage. I was finally diagnosed after falling into a coma like state and my father finally decided to get me medical help.

Needless to say, my mother (who was seperated from him) took over the parenting, and i lived with her and she moved the whole family to anchorage a few years later to be close to my pediatric GI (the only one in alaska)

Ive been through a lot of it.
Medicine Wise, ive exhausted the steroids, the sulfasalzines, antibiotics, anti depressants, and the new biological treatments (remicade and humira)

Surgery wise, Ive had an illeostomy (and then removed) bowel resections, no mor ecolon, no more rectum, i have become very friendly with my so un reliable J-pouch (lol) a few fistulectomys, Groshong Central Lines for TPN

I have never been in remission, and my current doctor is messing around with some weird medicine combinations to try to get me back to "calm"

current regimine is as follows:

mercaptopurine (6-mp)
Prograf
Effexor
nexium
flagyl
remicade (back to it, after a year of Humira)
Proctofoam
IV Iron

Currently i am battling a flare up, which has brought out Symptomatic Anemia, my Juvenile RA, and the good old friend Incontence.

Living in alaska, i havent met many with IBD or the likes, and the few i have have never stayed in touch. i smiled when i found this forum, and i went to sign up and realized i had been a member since 2006 but had never posted! wow.

well my email is [email protected] feel free to add me, and get used to seeing a lot of me around, im on a work leave! got a lot of free time on my hands.

thanks for reading.

 

[BWS1982]

Wow

You've been through a lot with this disease, and you have the best of spirits. I wish I could be so positive. You handle it so well, I'm happy for you. I'm new here, nice to meet you, I though unlike you, am newer to the disease in comparison (only 18 months with it, 4.5 in remission, I couldn't imagine no remission for 12 years like that). And you were diagnosed so young.

Seems this is a very supportive and collective environment, I think it's good to have a group of individuals I (we all) can vent and talk to, and being online means it's 24/7 accessible. I had a hard time building myself up to join any sort of support system, I've had an even harder time accepting this disease, hoping this place will help. I have a lot of anger about the whole thing still.

btw, gotta love that incontinence, that's the worst symptom for me at the time, and it's not just physical. It's an emotional symptom too, not having control to the degree that you can't even accomplish something that you mastered at only the toddler stage in life.

I just started Remicade a month ago, and am hoping its the one for me.

Nice to meet you Darci.

PS: I went to AK during my remission last summer (we landed in Anchorage and set sail on a Princess cruise from Seward); it was the most scenic place I've been in my life, the ocean, glaciers, forests, mountains, animals etc... it was gorgeous. I'm glad I got about 600 pictures from it.

 

[butt-eze]

I hope that you find everything that you're looking for. What I have liked most about this forum is that people actually talk about their symptoms and seem genuine. I feel like I get valid opinions and great advice. It's nice to know people who can relate to what you're going through.
One of my favorite things to do is poll people to see if I can find any patterns or answers to what I'm looking for.

Welcome!

 

[Migratorybird]

Any Anchorage Crohn's specialists?

I'm going to be up in Anchorage visiting your lovely city for two months and was wondering if anyone can recomment a GI doc? I've had Crohn's for 25 yrs and I've been on Remicade for 3 years and want to continue. Thanks! Remicade junkie