So, on my last 'end stoma post', I thought I'd go a la Buzzfeed and do one of these thinga-me-jigs. Happy reading!
12 thoughts on having a stoma
1. I've got to have a WHAT?!
Whether your operation is planned beforehand or done in an emergency, and even if you've known for some time that you'll need a stoma, your first reaction is probably going to be one of shock. And seriously, who can blame you? You've just had someone sit you down and tell you that despite all your life spent pooping from your backside, it's now going to be coming out of a hole in your tummy instead. Whether the thought of a stoma upsets you or not, the concept of having a bag and what that actually means is a big thing to get your head round. 'Scuse me?
2. This is the worst thing that's ever happened to me.
For a lot of people, the thought of having a stoma seems like the worst thing in the world. Fears that will turn out to be untrue - but which are perfectly understandable when facing the unknown - might fill your head - 'I'm going to smell horrible', 'It's going to make me ugly', 'It's going to stop me living the life I want to lead', 'It's going to be disgusting', 'People will judge me and/or avoid me'. I can tell you categorically that in a year's time these will all have been shown to be false - but if you're at this stage right now, it's not going to make any difference even if I was the oracle of truth - you still might not believe that things will be okay. And that's okay. You're perfectly entitled to feel rubbish about this.
3. This is the best thing that's ever happened to me.
However, particularly if you've had IBD for a long time, you might feel like now is the right time to have a stoma. For someone who's suffered for years, enduring multiple medications and humiliating accidents (not to mention constantly feeling like you've been hit by a train), having your traitor bowel removed might actually seem like a blessing in disguise.
4. I'm so tired now, I don't care.
When you first get out of surgery, you'll probably feel so drained and exhausted that your stoma will actually be the last thing on your mind. I actually found that this lasted for a few weeks. Getting better, not my stoma, was priority number one. In hospital and at home, I had help from nurses with changing my bag and sorting everything out, so apart from getting used to the feel and look of the bag, I was more focussed on taking my painkillers on time, the pain that happened if I ever forgot, and sleeping in every spare moment I had (when I wasn't wide eyed at 3am on steroids)
5. Wow - I actually feel a bit better now.
Even in the first few weeks, it's amazing how much better you'll feel without the stress of a rubbish colon to deal with. Your tiredness has already improved, your pain is disappearing, and your life has actually begun to belong to you, not the toilet. At this point you'll probably drift through the hours wondering how on earth you can lose a major organ and actually feel better as a result. Bodies are weird.
6. But my colon's gone, and I have to wear this bag, and LIFE'S NOT FLIPPIN FAIR
Of course, that's not to say that every day will be sunny. It's common and completely normal to feel a whole range of negative emotions after stoma surgery. These will probably be made worse by the fact that you're tired, in pain, and fed up of being stuck in bed. You might feel angry, like this isn't fair, 'why me?', or simply feel down at such a huge change in your body image. It is even possible to 'grieve' for the colon you've lost - with thoughts that you're different from everyone else, that your body will never be the same. It's important to remember that this is expected after any major surgery, let alone such a life changing one. If you feel like you can't cope, it may help to talk to a loved one, join a support group or talk to your GP. Whatever you do, don't beat yourself up for feeling this way - give yourself a bit of slack after you've gone through such a big ordeal.
7. But maybe there's some pros to having this stoma?
On your good days, you'll begin to realise that having a stoma isn't the hellhole you expected it to be. It's challenging, but nothing you can't handle. You might actually dare to hope that this operation has improved your life, not ruined it. As you gradually get back to normality - whether that's starting back at work or school, getting off your painkillers, going on small trips out - you start to understand that having a stoma doesn't stop you doing these things. In fact, you're back in control, and might actually be able to have a trip out of the house without searching high and low for a toilet.
8. I'm up and down so much, it confuses me
But there's still some bad days, and that's totally fine. Even months down the line when you feel like you're okay with everything, after a tough day at work or feeling generally down for whatever reason, those negative emotions surrounding your stoma may return. It might feel like you've fallen right back to square one again, and by this stage you might think you're being stupid, or should have got used to it all by now. Other days, you'll be super positive and happy, but this isn't one of them. Take a deep breath, sleep on it, and wake up the next day stronger than before, ready to move on.
9. Hmm. I could get used to this bag life.
After all, caring for your stoma is becoming easier by the day. It’s no longer a big deal to change your bag, but another part of the daily routine, like eating breakfast or brushing your teeth. You’ve got used to your new plumbing and how it works, and you’re actually pretty happy. You’re getting back into all the things you used to enjoy, and realising that this stoma hasn’t prevented that, but made life a hell of a lot easier.
10. After all, my stoma did save my life. It's pretty awesome, actually.
In fact, this little bag saved your life! It’s the reason
you’re here right now, spending time with your family, enjoying your hobbies,
and living on past IBD. For people who were extremely ill when they had their
stoma (as most people are), you might finally start to really appreciate the
benefits that stoma life can bring. Things could have turned out so much worse,
but thanks to this little bag, they didn’t. That’s a very small price to pay.
11. I don't care what you think.
If you’ve had any negative reactions before now (and if you
have, fyi they are an a**hole – despite the fact that you no longer use yours),
after months down the line you’ll begin to care a lot less about what people
think of your stoma. That doesn’t mean you have to share it with everyone –
some people prefer to tell only their close circle about their bag – but you’ll
start feeling comfortable in your own skin. You have a problem with how my poop
smells? How about you sit for a few minutes with the smell of yours? You have a
problem that I had to have this life-saving operation and now wear a bag,
without which I wouldn’t be here? So the sh*t might come out of my stomach, but
at least it’s not coming out of my mouth as well. I didn't get this bag for your approval. Touché.
12. My stoma? Oh yeah, I forgot about that.
As time goes by, although it seemed like such a big thing at
the time, memories of your stoma operation will begin to fade. After a year or
more, you’ll have achieved so much that this surgery will just be another thing
in your past. Something you’ve moved on from, and beaten once and for all. If
complications arise, it will be hard – but for a person who is well with a
stoma, life really does go on as normal, and it’s miles better than before.
When I go about my day, I genuinely forget about my stoma. Even when I go to
the toilet, it’s not some big event – emptying my bag is easy and super quick,
and changing it is routine. By this stage, you’ll probably be looking back and wishing
you-then could see you-now. You’ve got this far, and life’s good!
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