Here we go...

Replies
7
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721
Franicaa
Jun 22, 2010 11:08 pm
So I'm new here, and I've already met a few lovely people! Just thought I would share my story how I got here and what I plan do to in the future. Any advice is welcomed lovingly!!
When I was 15 I was misdiagnosed with coeliacs disease, bowel infections and common sickness bugs, only after an endoscopy, colonoscopy and being rushed into hospital did they actually find out that I had Ulcerative Colitis! I was in hospital for over a week on different strengths and types of steriods, not being able to keep any food in my body I had a chocolate milkshake a day and lost 2 stone. When they finally realised the steroids weren't working they pumped a load of immunosuppressant drugs into me which just made me worse to be honest! July 10th 2009 I was told I would be having surgery and getting an ileostomy, I didn't actually know what it was until I woke up in intensive care on the 11th. I remember having to walk the day after my surgery even though I was on a morphine drip and in agony! After that the ne t 3 days were a blur. It's almost been a year now and I'm considering getting the Pelvic/J-Pouch, there's pros and cons but I honestly don't know what I want anymore! On one hand I like my bag because it's easy to deal with and no one cares when I tell them, but on the other hand I'm young, I want to be able to go to the beach and wear a bikini without people staring at my bag all the time!
It's a long one for my first blog but I hope it gets people talking :)
JohnNotKen
Jun 22, 2010 11:21 pm
sorry i havnt readyour blog i just wanted to say quicklybegore you log off i recieved your coments and if you want to talk im in the main chat now. il be there till 1am.
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Franicaa
Jun 22, 2010 11:23 pm
I'm logging off now as I'm on my iPod and I can't get on the main chat room but I usually am on here during the day :)
JohnNotKen
Jun 22, 2010 11:25 pm
yeah sounds like a similar story of incompitance although my problem is slightly diferent to yours. if you dont log in for 1am il be in the main chat tomorow sometime. JNK
lottagelady
Jun 23, 2010 11:21 am
Hi Franicaa, welcome ... lots of us have ended up here due to misdiagnosis or slips of the knife so you are definitely amongst friends... Rach xx
 

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Franicaa
Jun 23, 2010 2:06 pm
Thankyou :) it's great to meet people who understand exactly how I'm feeling, even it is only a cyber friendship!
Scott Chance
Jun 28, 2010 10:41 am
Hi Franciaa,

Firstly, thanks very much for your reply on my thread about Coloplast bags.

Your story is remarkably similar to mine in terms of misdiagnosis at an early stage, steroids and immunosuppressants not working, the only difference seems to be mine happened a little later in life (I'm 31 now and had the surgery 9 weeks back).

The only thing I would say is that a few medical people have told me that even when medication "cures" Severe Ulcerative Collitis it can often re-emerge a few years later - I don't know about you, but constantly looking over your shoulder doesn't sound like a fun way to spend your life to me, so perhaps the Illeostomy was the best outcome for the both of us.

I'm currently at home recovering from the surgery so it would be nice to meet in the chat room if you're free during the day sometime?

Take care,

SC
Franicaa
Jul 02, 2010 11:24 am
Hi Scott.
Yeah I'm usually always in the chat room but because I don't have full membership I can only reply to emails sent to me.
Yeah, the other problem with UC and Crohns really, is with the J-Pouch, Pouchitis can be contracted, but antibiotics sort it out more often than not. Thanks for your comment.