So I'm new here, and I've already met a few lovely people! Just thought I would share my story about how I got here and what I plan to do in the future. Any advice is welcomed lovingly!!
When I was 15, I was misdiagnosed with celiac disease, bowel infections, and common sickness bugs. Only after an endoscopy, colonoscopy, and being rushed into the hospital did they actually find out that I had Ulcerative Colitis! I was in the hospital for over a week on different strengths and types of steroids, not being able to keep any food in my body. I had a chocolate milkshake a day and lost 2 stone. When they finally realized the steroids weren't working, they pumped a load of immunosuppressant drugs into me, which just made me worse, to be honest! On 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 next 3 days were a blur. It's almost been a year now, and I'm considering getting the Pelvic/J-Pouch. There are 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 :)
Sorry, I haven't read your blog. I just wanted to say quickly before you log off, I received your comments and if you want to talk, I'm in the main chat now. I'll be there till 1 AM.
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Yeah, sounds like a similar story of incompetence, although my problem is slightly different from yours. If you don't log in by 1 a.m., I'll be in the main chat tomorrow sometime. JNK
Hi Franicaa, welcome ... Lots of us have ended up here due to misdiagnosis or slips of the knife, so you are definitely among friends... Rach xx
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Thank you :) It's great to meet people who understand exactly how I'm feeling, even if it is only a cyber friendship!
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
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 Crohn's, really, is with the J-Pouch, Pouchitis can be contracted, but antibiotics sort it out more often than not. Thanks for your comment.