The Adventures Of Samwise

There's one way to wake up that I absolutely hate. It means I have massive anxieties surrounding sleeping anywhere other than my own bed, and anything other than alone. Because when I'm asleep I can't stop my bag from leaking. I can't know until I've woken up. Every single morning the very first conscious movement I make is to put my hand on and around my stoma bag, to check if it's leaked. I'd say about 5% of the time it has, and that doesn't seem like much, but that's over once a month. It's not always massive pools of poop everywhere, sometimes it's just started to leak and I can rush to the bathroom and sort it out before it's got anywhere. But not always.  So here is a photo that I wished never to show anybody ever, because I'm ashamed of it. But then I reminded myself that I'm not doing it on purpose, it's nothing I can avoid, and at least I'm a-fucking-live.  So this is my mattress. Covered in stains. It's...

Somebody I know messaged me and suggested that I write a post about the symptoms of Crohn's Disease, because if I'd have known them when I was younger then there's every chance I wouldn't have got this ill. And isn't the entire point of this blog to raise awareness anyway? So, here goes. This is every symptom I've ever experienced, what it felt like, how long it lasted, and anything else I can think that might help anybody, at all. I'd like to point out, that my symptoms were massively severe, as I have a really bad case. Not everyone will experience stuff to this degree. So when I was 11, I poo'd like, constantly.   Obviously I didn't just wake up one day and suddenly have to go 30 times. It was a gradual development. Which is what makes you get used to it, think it's more normal than it is. This is going to get descriptive. So it's not just a runny poo. Occasionally it's a runny poo. With blood and mucus in it. But after the 5th one...

As previously mentioned, I had a hospital appointment yesterday to discuss the future of my treatment. So I thought I should write a post about it. I was really anxious about going yesterday as I was meeting with a consultant that I don't know. I've apparently met him before, last year. But I was high on pain meds and quite seriously ill at the time, so I have zero recollection of it. I probably made a tit of myself. But he was lovely.  I had no reason to be nervous, as he's an absolutely lovely doctor. The reason that I was meeting with a new consultant is that my old one wasn't... great. I met her less than five times in the five years I was under her care, all the while I was seriously ill. She would forget to pass on messages, my treatment wasn't prioritised when it needed to be, and in the end one of my surgeons (who fully deserves a massively long post about him at some point) had a bit of a shout at her. So long story short, I have a new consultant. Any...

Now I should most definitely be used to this by now. And to an extent, I am. But now that my steroids have reduced low enough, I'm experiencing a lot of Crohn's symptoms. Enough that I've actually had to phone in sick to work. That might not sound like a big deal, but to me it always has been. I know I have this for life. Which means when I'm ill, I can't just take time off, because it's not going anywhere. But occasionally it does get to the stage where I'd be no use at work anyway. Which sucks. So I've phoned in sick. I'm waiting to see my consultant this week also, in the vague hopes that they'll say "hey actually we have this really good plan of action that isn't invasive and doesn't involve you physically being in hospital and you can probably just get on with your life". That won't happen. So until I see them and know what's going on, I'm kind of in limbo. Back to the symptoms though, because lately I'v...

Frequently Asked Questions.  Over the past five years of having a stoma, I've noticed there's particular things that people always ask, and then there's the odd question that makes me stop and ask them "what the fuck made you think of that". The thing I by far get asked the most is if I can control when my stoma poo's. I can't. I can't even feel it on a good day. Anyone that knows me will have noticed that I touch my left side a lot, because it's the only way I can know if I need to empty my bag. Oh, this also means I can't control when it farts. Part of me thinks that maybe it can control that, because it only ever happens at the most inconvenient times, and not when I'm sat alone in my room. Samwise is a bit of a dick. I once had to give a big presentation at uni in front of everyone, and as soon as I stood up to do it and everyone went quiet, it did the loudest fart I've literally ever heard come from it. Most of the people there w...

So this is the story about how I got diagnosed with Crohn's Disease. Because it wasn't as straight forward as you'd hope a diagnosis would be. Thousands of people every year get told they have some form of IBD, and it's becoming increasingly common for the average age to be early teens, although when I was diagnosed, this was still relatively uncommon. More so, as a teenage girl, I feel that potentially I wasn't taken as seriously as I should have been. So when I was 11 years old, I started to lose weight. Drastically. I went down to a size 2 (which doesn't really exist, I'd kind of have to find the very rare size 4 clothing and a belt). Weight loss of this extreme comes with all manor of side effects, things like your hair falling out, your skin turning grey, obvious fatigue, lack of concentration, issues with how you view yourself and your body, and one of the ones I personally found the worst - not being able to sit down without bruising my spine becaus...

Currently I look like this 🌝 because I'm on a six week course of a steroid medication called Prednisolone. Hands down all Crohn's patients worst enemy and best friend simultaneously. On the one hand I look like the moon, I can't stop eating , I have the widest variety of mood swings in the shortest spaces of time, I can't sleep and I sweat 24/7. Then on the other hand I have so much energy ( I've cleaned the house at 7am every day this week and then been mildly disappointed when I've finished and have to sit down), I'm not in pain, and probably again the energy thing. Even when you're in remission with Crohn's Disease, fatigue is an everyday part of life that just does not go away, so steroids are a welcome relief from that. I love being able to actually stand up for an hour without thinking my legs are going to give out. It's little things like that which are probably the most annoying to cope with, as they're the things people don't ...