12 May 2017

UPDATE: I’VE NAMED MY STOMA!

She’s called Sally. So if I ever talk about Sally, that’s what I mean. I still see her as a slimey red penis that sticks out my tummy and poos on me on an almost daily basis, but giving her a name means I can talk about things when I’m out for lunch of coffee with Mum and not get weird looks for talking about poo.


IMG_8567My holiday is getting closer each day and thinking about it, part of me would love to do another season abroad. I think one of the main reasons I didn’t enjoy it last year was because I knew it was killing my relationship and there was nothing I could do to save it. And the fact that it was slowly killing me… However at the time I didn’t know it was killing me. But I knew something was seriously wrong, but I was too scared to tell my team manager and go to the doctors which I think is something I’ll regret for the rest of my life. I can’t help but think “what if they’d diagnosed my in Turkey, would I still have needed an emergency colectomy?” But I’ll never know the answer to that, and I have to focus on the future, however that is easier said than done… 

Back to repping though… I want to save for a house, learn to drive, have a family and so much more. They’re all things I just feel like I couldn’t do on a reps wage. So for now, I’ll just stick to holidays! That and the fact that I’ve now got stoma supplies to think about… My doctors can’t seem to get the right prescription delivered to me when I live just down the road so they sure as hell wouldn’t be any help if I was in a different country!learner280

I’ve had an absolute mare trying to get my latest prescription. Up till now, the nurses have sorted everything out for me. However this was the first month I needed to get them myself, however good ol’ Ambrose has royally messed them up.

In February, when I saw the nurses they gave me samples of other bags to try because I didn’t like the basic brown ones I’d been using since just after surgery. They’re big and dig into the upper part of my thigh, along my bikini line where my body is short. But they’re also see through… As soon as Sally starts to do her thing, you can see my output through them, they’re that see through. They also don’t stick very well. So I’ve opted to use SenSura Mio bags instead. These are designed by none other than Ted Baker. So in theory, you can say I’ve got dozens of designer bags, because I do. But I just poo in them rather than put my purse and stuff in them!

sensura mioThe SenSura Mio bags are so much nicer than the standard Coloplast bags. They come in three different sizes, mini, midi and I think the others are just called standard, I’m not really sure. But they’re grey and only go slightly see through when they’re wet which is a massive bonus! The bags themselves stick to me a lot better so I’m less worried about leaks and not having to change them every day also saves the skin on my stomach.

Having a bag is like having a permanent plaster. You have to take it off and change it to keep the wound (stoma) clean, but each time you rip that plaster off, you take away the top layer of skin and cause a bit of irritation. However due to the nature of the wound, you can’t be without the plaster. I’m sure most of you know, but if you don’t, you don’t have any control over the movement in your intestines. So Sally poos, when Sally wants to poo and I have no control over that. For that reason, I cannot go without a bag being stuck to me, because I would literally leave a trail of poo wherever I go. It doesn’t look pretty and it certainly doesn’t smell pretty either!

So I prefer the grey bags, however, they are more expensive. Having a stoma entitles people to free prescriptions so we don’t have to worry about buying our supplies because they aren’t cheap. A box of basic 30 bags can be anything from £50 upwards, and then you’ve got the cloths and disposable bags on top. So what my GP seems to have done is disregard the fact that I’ve requested the grey bags, and just ordered me the brown ones. I am fuming. If I wanted the brown ones, I would order the brown ones. I’ve been on the phone to my nurses and they’ve put together an “emergency holiday” pack for me to pick up from the hospital tomorrow to make sure I have enough supplies to go away with and they’ve said they’ll call my GP and have a word with them. Just seems to be one thing after another…


I’ve been having a bit of trouble with Sally recently… My appetite was slowly starting to come back, but it seems to have disappeared again. I’m eating because I know I have to, but not because I actually want to. The actual act of eating seems like so much effort, and that’s not right. Eating and nourishing my body shouldn’t feel like a chore, but for some reason it is right now…

I’ve been off of my B12 tablets for just over two weeks now and boy have I noticed a difference in how I’m feeling! Aside from the lack of partial blockages, I’d love to say that in general I feel better but that’s far from the case. I somehow still manage to get out of bed each day and go to work, but even something as little as getting out of bed is a chore most days.

My joints are so stiff, and the only thing I can think that it could possibly be is that I’ve stopped taking my B12 tablets, along with the fact Im now back at work more than 35 hours a week. It’s crazy to think that six months ago, my body was ready to shut down. It was shutting down and I had a number of doctors fighting to save my life, when in all honesty, I was ready to give up that battle. And now I’m (almost) back to being me again. So although I have a bag full of poo, and achey joints, it’s nothing compared to what I’ve been through and how I was feeling six months ago. I just need to reminding myself that every day.

 

 

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