Today is World IBD Day, and so I wanted to share my story. If you’ve been to my site before, you’ve probably already read this, but if not, then read about it here.
The IBD Questions Tag
I decided to do an “IBD Questions” tag on YouTube but I’ll also post it here too. And seeing as you’re reading this, I tag YOU to answer them on your own blog or vlog! (Of course, it helps to answer these questions if you actually have some form of IBD…)
1. What type of IBD do you have?
I have Crohn’s Disease.
2. How old were you when you first started seeing symptoms?
I think most of my symptoms began when I was in my second year of university, so around 19/20 years old. Saying that, I remember being really nervous when meeting Chris’ parents for the first time when I was 16 and I was in and out of the toilet all day. Thinking back, that might have been the first hint.
3. What were your first thoughts when you started getting symptoms?
“Oh, it’ll go away, I’ll just ignore it and I’m sure my body will sort itself out.” Spoiler alert: it didn’t sort itself out.
4. What treatment have you gone through for your IBD?
At first, I was put on a LOAD of steroids called Prednisolone (known as Prednisone in the US) and some immunosuppressants called Azathioprine. I was also given something called Modulen which was disgusting. None of these really fixed the problem, so surgery was the only alternative. Especially after my bowel perforated…
5. Have you had any surgery relating to your IBD?
Yep. I had a partial colectomy (removed part of the colon), drained the Psoas abscess which had formed from the perforation, and they created an ileostomy (for faeces) and a colostomy (for mucus).
6. Before your diagnosis, did you know what IBD was? How did you learn about it?
Not really. Leading up to and during my illness, I had an American boyfriend (long distance and all that) and he had Crohn’s disease, but I had no idea what it was. All I knew was that it must have been bad because I saw photos of him as a kid when he was flaring and he was dead skinny. I remember my Mum saying “oh, that’s a horrific disease” and me thinking “oh dear, that sounds terrible.” Then a few months later I was diagnosed. I swear, he sent it to me in an email…
7. What has been the biggest challenge you have faced during your battle with IBD?
Surprisingly, getting my head around having a stoma wasn’t as bad as the actual recovery from the laparotomy. That was because my recovery was terrible, and the laparotomy had reopened so it took AGES to heal and it was just gross. The first night home was the worst because my ostomy bag leaked INTO the wound. Yep. That was a pretty terrible night. But the worst had happened, all on the first night home. It could only get better from that point on.
8. What has been the most positive moment during your battle with IBD?
The moment when I started gaining weight was pretty positive. Or the first time I managed to walk to the toilet and back after surgery was a big one for me. But more recently, it’s been getting amazing feedback from people who watch my videos. Just yesterday I had a wonderful message on Facebook from someone who was telling me that my videos about living with IBD and an ostomy has helped them come to terms with it themselves. It’s hearing stuff like that which makes it all worthwhile.
9. Are you in remission or do you still have frequent flare ups?
Ever since my surgery I’ve been in remission.
10. What piece of advice would you give someone who is suffering with the symptoms of IBD?
Don’t suffer in silence. Go to your doctor, and DON’T be embarrassed – it’s their job. They want to fix you, or at least make you feel a lot better. Besides, they’ve seen a lot worse. Specifically, they’ve seen the likes of me, and mine was pretty shocking. So try to go sooner rather than later, and don’t think it’ll go away on it’s on because, if you ignore it, chances are that it’ll get worse and worse. Be proactive. 🙂
Some useful IBD links:
Crohn’s and Colitis UK:
Crohn’s Disease Forum:
CCFA: Crohn’s | Colitis | IBD
Crohn’s Disease Support:
Make a Difference, Get Your Belly Out!
Until next time reader, hope you’re having an awesome day! <3