I am very excited to tell you all that I have hit over 30,000 views! Fellow Crohn's sufferer and amazing magician Dynamo re-tweeted my blog which I am sure helped. It is great to hear of high profile and successful IBD sufferers, it just proves that there is no reason it should stop you doing anything.
To celebrate getting the word out to so many more people about IBD and ostomies I invited one of my favourite fellow bloggers to write a guest post for me. Imagine Being Different was one of the first blogs I read the day I was told I would be meeting Margaret; it helped me to see that it really wouldn't be so bad.
A big thank you to Gabi for letting me ramble on her awesome blog. As Gabi has recently had surgery for an ileostomy, I think it’s only fitting that I tell you about when I had my own.
At the end of May 2010, I had to have an emergency operation because my Ulcerative Colitis was flaring so badly.
I had been told about surgery since being diagnosed with UC, which was back in 2008, but I never for one second really thought that it would happen to me so all the information completely bounced over my head.
I had been in hospital for two weeks because of a virus in my bowel which wasn’t allowing the Colitis to settle. I had been pumped with so many drugs and had so many blood tests that my arms were black with bruises. Surgery had been thrown around and I said that I was tired of being sick so maybe surgery was best, I had so many things I wanted to do with my life and though I tried to never let Colitis truly stop me, he was such a party pooper sometimes and he inevitably did stop me from doing the things that I wanted to do.
The first time I saw the stoma nurse, she marked my tummy with a black marker for where the stoma would sit and showed me some leaflets. I really don’t know what I expected the stoma to look like, but I do know that when I saw one for the first time I was like “What the…” and after she had left, I burst into tears.
How was I meant to live my life with my intestine popping out of me? It was like right there!!! In all its pink glory, gleeful that it had been given a taste of the outside world.
I didn’t really have time to get used to the idea, and maybe that was a good thing. Knowing me, I would have researched all the stories, freaked myself out and become super stressed about it.
As I’m writing this, 3 years on, it’s only now that I see how unbelievably sick I was. Before I had my surgery I nearly passed out in the hospital shop and there were times in my recovery that I had to get a nurse to help me get out of bed so that I could go to the toilet.
I think people with IBD are the strongest people I have ever known. We battle through so much because we don’t want to miss out on life. We try to enjoy life as much as possible despite our shortcomings and the majority of the time people don’t even realise how sick we are. To be honest, I don’t even think we realise how sick we are! We’re so used to battling through the bad days it’s only with time and perspective that we realise that perhaps our stubborn nature of pushing through and not letting IBD win, can hinder us.
The reason why I say this is because during my recovery process after my first operation I wanted to be out and about doing things. I pushed myself daily to recover but what I didn’t give myself was time. I saw the operation as something that would make me better and I was sick and tired of being sick and tired so I expected to have the operation and be back to normal pretty quickly.
But what I didn’t think was that I had just had a major operation and not only that, I was extremely sick before the op. My body was trying hard to fight being so poorly and them BAM it had its large intestine removed, and was in massive shock and yet there I was, two weeks later trying to have a beer, watching the football in the pub. I put epic stress on myself to return to normality that mentally I struggled and wondered why it wasn’t happening quickly enough.
Of course, hindsight is a beautiful thing and I’m sure those of you who have had the operation are sick of being told to give it time. I can only tell you of my experience and I’m sure, that like myself, you will find your own way.
I named my Stoma Tin Tin and used to talk to him all the time. By the way, I do not recommend talking to your stoma in public, if you are a girl, you will look like you’re pregnant and if you’re a boy, you’ll most probably look a little strange.
I found it easier to deal with, especially if he was acting up. I remember once trying to change him and he was spurting this weird, thick green goo and I couldn’t get the bag over him so I’d shout at him to quit p*ssing about. It never worked, but it made me feel better. What did work though was either changing the bag in the morning before I had eaten. Or Jelly babies. Those bad boys would stop any output long enough for me to clean and pop a fresh bag on.
As time goes on, dare I say it, you and your stoma may even become friends. This is most probably going to sound a little gross but sometimes I’d just watch Tin Tin. I’d lie down and stare at his movements and listen to all the weird little noises he made. I wouldn’t go as far to say that I miss him now I have a J-pouch but I do think fondly of him from time to time, and I think that’s also because I was lucky that I did have a very well behaved stoma. Sure, he did things occasionally like leak whilst I was on my first holiday abroad or explode in bed, but generally, he wasn’t too bad.
So I guess what I’m trying to say through this ramble is, let your body heal at its own pace, try not to get too frustrated with the ‘one step forward, two steps back’ routine, love yourself, and most importantly love your stoma. Chances are that little guy saved your life.
You can find me over at www.imaginebeingdifferent.co.uk or @Super_Steph23 for more of my ramblings :)
Lots of love
Lots of love