It’s hard believe it’s just a little over 3 weeks since my ileostomy. The time in hospital was a fairly negative experience for me, but fortunately only fragments are memorable for me, the rest having gone by in fits of restless sleep and a morphine haze.

The first week after hospital was a bit of a blur, though I felt surprisingly well. I benefited greatly from coming back home initially, where I was more comfortable, more at ease, and actually able to sleep. I could get some fresh air (the hospital was very stuffy) and breathe properly, and some peaceful hours of sleep here in there (with no interruptions) and with no tubes I could move about a bit more easily. I had energy, and for someone with chronic exhaustion, I actually felt pretty good!

It was quite disappointing, therefore, when this seemed to wear off after the first couple of days. I noticed myself growing more and more tired, physically and emotionally. In these first 3 weeks, I’ve had a couple of leaks, but nothing too extreme. The first was at night, and wasn’t that bad in all honesty. Nonetheless, when I woke up and noticed I was absolutely mortified. It was made worse knowing I would have to tell my mother, who’s helping me out after surgery and is an absolute God send, because I knew I needed her help with washing and changing bedclothes, what with the restrictions of lifting and doing anything reasonably strenuous. She wasn’t at all bothered by the leak; it was me that was bothered, me that felt embarrassed and disgusted and disappointed. I’ve had another one or two since, but I think on the whole I’ve been quite lucky thus far.

But these experiences have at least served some purpose: they’ve taught me a bit about what can cause problems with bags, so I now know, for instance, not to have to bag too tight around the stoma so that it doesn’t stick properly to the skin, nor too wide. It’s also taught me that leaks can and will happen, that they’re not the end of the world, and that I can deal with them and move on.

I’ve had a decent bit of skin irritation, which my stoma nurse has been very helpful with. I’ve now got barrier wipes to use when changing the pouch, and I’m trialling out both a barrier ring and a convex bag to see which works best. Turns out my smaller frame makes things a little more tricky for the bag to fit flush against my skin, and the stoma opens to the side, so I need something to almost push this upwards, to keep output going up and down into the bag rather than sideways.

My mood has been erratic, with a couple of good moments and flickers of hope where I think about a better future hopefully without the same problems, pain and difficulties that I had before the stoma. But the stoma brings with it its own difficulties, and when I came out of the hospital initially I felt like a monster. I felt horrible, angry, ugly, scared. I knew the instant I returned home and felt overwhelmed by all of these things that I couldn’t let myself think too much about how I felt or be too negative; I feared that by considering my emotional state and feelings on the situation, I’d drown in it, that I’d get so down that I’d struggle to get back up. I then focused on the practicalities, of getting a bit of structure, of setting tiny goals, on getting rest and being productive when possible in small ways. It’s not a tactic I would heartily recommend, but a bit of denial and distraction can be helpful when feeling overwhelmed.

Like with standing on a hose pipe, however, there’s only so long before that tactic can be your undoing.

Last night. Bedroom floor. Me: snot monster. I felt myself getting agitated for a couple of hours, it gradually building up, and then somehow I ended up bawling my eyes out on the floor. Through closed doors and a ceiling, my mother said she heard a ‘mewling’ like a cat being strangled and came to investigate. That was me. Turns out I’m a loud crier, not just a snotty one.

GoslingSnotty

I felt pretty negative before my surgery, having spent just over 8 years with various problems and feeling as if my 20s have pretty much been a waste. These feelings and thoughts don’t magically go away, nor are they instantly diffused once you get a stoma and a chance at a fresh start. Instead, they can be magnified, because now you’re adding on the prospect of living your life, of taking this fresh start, with a bag and all that it entails, when you likely never imagined that would be the case. It’s a lot to get your head around, but starting to actually face your thoughts and experience your feelings is a good start.

Feeling what you’re feeling, really experiencing it and facing it, can be cathartic. It’s scary and unpleasant, but when it’s been building for some time actually getting those thoughts and feelings out can be quite cathartic. I feel a bit better today. But I know I’ll have another wobble, or countless wobbles, as time goes on. And that’s okay. It doesn’t make you week, self-absorbed or selfish. Quite the opposite. It means you’re actually facing what’s going on rather than avoiding, ignoring or delaying. Everyone will cope differently and whatever you’re dealing with, you do so in your own time, in your own way. Just know that it’s okay to have ups and downs, and instead of seeing the downs as failures or setbacks, see them as simply part of the journey.

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