meeting Paramore
in Belfast, UK
Introduction:
My name is Jamie, I was diagnosed with UC on the 6th of September 2011.
currently in full remission for the last 4 months and couldn’t be better!
My Symptoms:
symptom free completely up to 7 weeks after remicade.
My Story:
Felt like I needed to do a post here because it’s exactly 1 year today since I left the hospital, since I knew my whole life was about to change in ways i couldn’t even have imagined. And really, right now where I’m at is a pretty good place to be :)
In this year, I’ve made AMAZING life long friends, from all over! including 2 amazing girls from Sweden, who I finally got to meet for the first time last month!
I thought this disease was going to end my social life, if anything I have more of a social life now than i did before, I’m an 18 year old guy who doesn’t like being stuck inside! what else can I say? :P
I have many things I regret not being able to do because of this disease, like having to drop out of school is my main one, I really wish my flare hadn’t been that bad and I didn’t have to leave :/ it killed me to say goodbye, but I’ve found ways around it, i’m still working towards my goals!
Also, another great thing was when the kitchen staff in the hospital that I was in, one of them had crohn’s disease, talking to her made me feel so at ease knowing that someone else knew what I was going through, along with this page, the short conversation I had with her made me feel like I was gonna be okay, she’s out and working, even if it’s not a dream job. and it took away a lot of anxiety I had about IBD.
I feel like a transformed person in this year, I don’t think I’ve changed much personally, just wised up and changed physically. like, gained a lot of weight! (from 98 pounds to 135) and the battle has taken it’s tole on me, I do look a lot physically older too, I no longer have the baby face I once had, but oh well!! at least I can go to shop and get served alcohol without my ID! :P
This has been the toughest year of my life, but I wouldn’t change a single thing. this is gods plan in my mind, and I’m just going along for the ride to see where it takes me!
Where I’d like to be in 1 year:
finished my foundation degree in councilling and psychotherapy and studying psychology in college.
Colitis Medications:
Remicade is a god send! if you’re worried about trying it, don’t be!
written by Jaime
submitted in the colitis venting area
I’m From Dublin, Ireland
Back in November 2010, I noticed some changes to my bowel habits.
Before this, my bowel motions were pretty much once a day, normal motions, but on November 5th I started to get looser motions, which became more frequent, at the start I thought this was absolutely nothing to worry about, and within 2 weeks it sort of returned to normal.
:-) Great to hear of your continued remission…awesome!
Best and continued good health, Shelly
Thanks, Shelly! :)
Hope colitis is treating you well too and that you’re either in remission or chasing it down! :)
Hi JamielsLame,
Fab that remicade traeted you so well! That is truly great news. I#m am over the moon for you, my friend!
What could be better than remission, right!!
Cheers:)
Thanks Bev!
Quite glad it’s worked so well too! wasn’t expecting it, quietly dreading the worst before I started it! never imagined i’d be in remission for this long! especially since the last full remission I had before this only lasted 2 weeks!
Hope you’re doing well too ! :)
Hi
Happy to hear you are in remission. That is great! Also so happy to hear about remicade. I have been in a flare for a year. I suffered for awhile, being stubborn about medicine. Finally gave in and went on azathioprine but started to get pancreatitis so I had to bee taken off of it. Finally started remicade. My first infusion was Sept. 17th. All the nurses at the infusion clinic were awesome and totally put my mind at ease. I can’t wait until I feel better. I miss having a life so much. Awesome to read that remicade is a godsend for you. I hope it will be for me too. All the best to you :)
Hey Tracy!
I’ve never been on azathioprine, but I’ve never heard good things about it! it’s not FDA approved for IBD, and really shouldn’t be given for IBD especially when there’s stronger, better targeted immunosupression which not only has a better chance of working, but will harm your immune system far less than an overall supressant. it’s like using targeted painkillers instead of just taking some ibprofen (which we can’t take with IBD…)
Remicade has worked absolutley amazingly for me with no side effects at all, apart from a headache for about a week after the first infusion, that was it! you’re in early days, after 2 weeks I felt a bit better, then I got another infusion and felt a tonne better, by the 3rd I was almost blood free and returning to a normal bowel function!
sometimes, it works slower than for others, but I have great confidence in this medication, absolutely every nurse in the infusion ward of Beaumont hospital (the hospital in Dublin where I attend) has told me that their patients say it’s the greatest thing to happen to their lives, I was a skeptic, now I’m a true believer!
I really hope it works as well for you as it did for me, nobody deserves a life where they’re struggling to get off the toilet, and I know as much as you do how horrible it is!
Keep us updated! I’d love to see how you’re getting on through the colitis venting area!
– Jamie
PS, Adam, if you read this and Tracy does post a story, can you email it to me please in case I miss it? thanks!
Jamie- Thanks so much for your post. I am starting my Remicade within the next two weeks and success stories like yours have given me amazing hope. I hope that you are able to get back to school and finish out that degree. Thanks again
I am excited to get off the predisone. I am a teacher and the moon face has my kids questioning if I am not a brother of their former teacher : )
Keeping you in my prayers!
Kyle