I've been very inactive on the blog recently and I have my reasons, which is what this blog post is all about. If you read back over some of my posts, you'll see I mentioned I was ill but never really said what was wrong with me. Two years ago, I was diagnosed with Inflammatory Bowel Disease (IBD) and recently I've been flaring quite badly with it to the point that I was admitted into hospital sixteen days ago. After trying to calm the flare with a high dosage of steroids, which didn't work, the doctors decided to take my colon out. So last week I underwent ileostomy surgery and now have a stoma and a mucas fistula.
If you're wondering what ileostomy surgery is...they remove your colon (large bowel) and leave you with an ileostomy bag which is a bag for your poo basically. I know it probably sounds disgusting but my colon was not in a good way and was making me really ill, so I'll take the bag! Under the bag is my Stoma which is a bit of the small bowel which is on my tummy. I still find it really weird to look at and the fact that that everything feels so different at the moment but I guess it's just a new normal!
I had a few days to get my head around the idea of having a bag (okay, so two days) and in those days I met with my local securicare stoma nurses (who are amazing) who talked me through everything from different types of bags to living with a stoma and all the random questions which I had going through my head from will I be able to eat normally to can I go swimming to will I look weird...the list goes on and on (and I think I'll do a blog post just on them!)
not the nicest photo but this is me exactly a week ago as I was waking up from surgery |
When I woke up, I also found that I had something called a mucas fistula which is like a flat stoma on the right side of tummy. This freaked me out quite a bit because even though the surgeon had mentioned I might have one, I'd not really thought about it. The mucas fistula is the very last but of my bowel to my rectum which is still inflamed so they've brought it to the surface so it can't harm me and they can still put medicine in it to try and calm the inflammation down. They left it there so it could be treated, with the inflammation gone, there could be an opportunity to have my stoma reversed and an internal pouch created. Now, whilst I'm a way off that yet and there is the chance I may not be able to have it, at least have the options in 6 months time or so. Otherwise, I'll have it put back inside me and I'll just be left with my stoma.
Me having cake for the first time after surgery! I was so excited, it was quite funny |
Whilst this has all been terrifying and emotionally draining, I wanted to turn this into a positive in my life which is why I've decided to blog about my experience and be able to offer help to other young people in similar situations and raise awareness for this disease.
I'm pleased to say that I'm at home now and starting to get my head around everything, which is another reason why I'm going to blog about this - because this is a lifestyle blog and this is my life now and I hope you can all join me on this journey and help raise awareness!
Katie xo
you are very inspiring to me. I just got my ileostomy emergency surgery in July.
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