How do I hate something that has saved my life?

No, seriously, how?

Maybe the question should be ‘CAN I hate something that has saved my life?” or even “Can I hate something that has CHANGED my life?

Because, I can hate the fact that my disease was so bad, they had no other option than to remove my colon and give me my ileostomy. I can hate that fact until the cows come home, it still doesn’t change what happened. Does hating my ostomy make it easier to accept? Does this just make me negative and unable to live with it? I have no choice but to live with it, because I can’t go back in time and this surgical option did not come with a reversal. This is how my body and digestive system will be until I die. And saying that, even typing, fills me with panic. Why? Because there is so many years ahead of me before I die *fingers crossed, knocks on wood* and never not being without my ostomy bag feels so weird. Even though in this short space of time I have already gotten used to it, it’s just part of me now; knowing this is how I will be and look for many many many years to come, is hard. Hard to accept. But accept it I must. Feeling constantly like ‘I am different’ is always going to be rolling around my head too.

But I don’t feel disappointed it came to this. I am thankful I am no longer living in pain and I am getting back the control over my body and my life that Crohn’s disease was eating away at this year. Despite my first surgery, I realise now I was still suffering in a very bad way. I don’t feel let down by my medical team or even my surgeon; I was always well looked after and well informed with all their clinical decisions and what I was ‘expected’ to happen. But in a way that I’ve always felt, I feel let down. By me. Because my body is so shit to begin with, that it decided its only option was to attack my colon so much, destroy it so much before I had had enough that it had to come out. I feel like I’ve let my IBD team down. Because I shouldn’t be such a problem child to them. I am and have been thoroughly dependent on them and their specialised expertise. It is an utterly frustrating situation and I couldn’t help but keep saying “I’m sorry I keep needing to come back.”

Is that fair? Unfortunately, I’ve learnt over the years, not much is fair in having a chronic illness. It keeps stealing parts of you, just when you’ve gotten use to the current set of circumstances and challenges. It’s like it want to keep you on your toes, to not let you get too comfortable, to always be planning something awful to happen, just to test you.

So, I can’t hate the one thing that has been able to give me a good, hard chance to take back everything my illness has stolen from me. Slowly but surely, I will get them back.

But I can hate how unpredictable it can be and how unpredictable it can make me feel.

I can hate it when it leaks and undoes all my hard work over the last six weeks or so, making me paranoid and angry.

I can hate it when it makes the most awfully long fart noises when it is quiet.

I can hate it when it gurgles and keeps me awake.

I can hate it when I can’t figure out why its acting up.

I can hate it. I can hate it. I just need to not let my hate take over everything else, to not let it cloud all the other sunshine in my life.

***

Each time I have one of the situations above happen to me; I have to seriously and calmly consider my life without my little buddy, my stoma.

I have to consciously count to five, very slowly and carefully, breathing deeply and remember the pure agony I was in. Remember the PICC line. Remember them placing my fucking NG tube. Remember how I begged to be admitted.

Like when women go through childbirth and don’t ever want to go through that pain again but forget this when they consider having another; I would always forget my pain and just carry on. I think a lot of IBD patients experience this; getting use to the persistent pains and agony we endure in order to function. It’s hard to decide when it’s time to call it quits. It took me weeks and weeks in the summer, of pure agony to even consider asking my IBD nurses for help; to just get me admitted and I would deal with what was to come when it came. It was a solid plan and whilst it happened, I was a trooper and did everything asked of me. I knew I would get sicker, I would endure horrible procedures, probably even another surgery; but it had to be better than what I was already going through? Of course, it would be.

So, I have to consider that every time something ‘goes wrong’ with my stoma or ostomy bag.

I have to take myself back to the worse parts of the summer, I have to relive that when things are bad. It’s my safety net (?) That’s why I have photos, videos and notes of my hospital admissions, to give me strength. I see my own strength in my lowest moments. It keeps me moving forward. Not that I have any other direction to go, but it’s reassures me that despite feeling like my body is out of control, I actually do have control now. And I need to fight for that. I need to accept my current conditions but live them in my terms. I won’t let my shitty disease get the better of me (again) and I won’t let it win.

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2 comments

  1. I feel so much of this. I struggle with this internally every day, every hour. I could really use a friend who understands if you’d be interested in talking sometime.
    Amy

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