Hell Week – My Experience with J-Pouch Surgery

Two weeks ago I had my ileostomy reversed via J Pouch surgery. It went well, my week in hospital sucked, I don’t know how I feel about any of it. Let’s explore.


Me: why does my back hurt so much?

Them:

I wake up from surgery in my dimly lit hospital room, foggy headed – “I’m alive at least” I think as I try to wrap my head around the situation. I start wailing in pain to my partner and the poor nurse who had been assigned me for the day. Help, help, help, my back. What the fuck, his back? What’s wrong with his back? They move the bed up -WROONG WAAAY. They move it down flat, that doesn’t work either. I resign to the fact that my back is just wrecked and all I can do is whimper in pain until I actually come to a bit more. Oh wait, I have morphine on a button, never mind. This would be my first of many hurdles in the week I spent in hospital – one I’ve lovingly dubbed Hell Week.


My back pain was explained in that they usually wrench you around while you’re under general anaesthetic, it wasn’t until I was given my discharge summary and read the report when I discovered what position they had me in to operate! Things looked okay the day after surgery, I actually felt pretty good, was mobile and had energy. I slowly introduced food – eating a plate of scrambled eggs for breakfast the morning of the AFL Grand Final. This was the turning point for me going downhill, introducing Hell Week. Over the course of the day I start to get sicker and sicker – culminating in me throwing up the eggs during the post match ceremony.

First we thought I was nauseous from the slow release Tapentadol – that was stopped and I threw up again. Okay, maybe it’s all forms of Tapentadol? Nope, still throwing up. I get the most violent hiccups I’ve ever experienced that do not go away. This happened over the course of two whole days. I got no sleep, was taken off food again, had constant hiccups, threw up intermittently, and was unbelievably sore thanks to no longer having any pain relief. At the tail end of the two day ordeal I was finally charted some medication to settle the reflux and hiccups. They worked, twenty minutes later I felt I had recovered incredibly.

“Yeh, so they still want us to tube you”. Great. I had the roughest, most awful nasogastric tube put into me. I sat there like a sick dog wanting to be put down, begging them to take it out. Thirty minutes with that tube was the most horrifically traumatising experience across both of my surgeries, and probably my entire life – that’s how bad it was. Once it was taken out I was determined to make sure I didn’t throw up again, lest I face the wretched tube once more. Between the new drugs and making the effort to go to the toilet more often, I began to finally recover.


Before committing myself to the original ileostomy surgery I had fully researched what reversal looked like and how viable it was for me. A J-Pouch was the plan – some sense of normality to my bodily functions, whilst the stoma was just a three-ish month road block. It wasn’t until I had the stoma for those few months that I came to really love life with it and feel less certain about the reversal. I’ve written about how much my life improved with my stoma, and if I’m honest with myself it really wasn’t a big deal to live with. I actually had a bit of narcissistic joy in having this cool thing happen to my body that differentiated me from most people I meet. The decision to follow on with the J-Pouch was a lot harder than I ever thought it would be, and really came down to one question: what do I stand to gain from this?

That was a difficult question to answer before the surgery, but since being home I’ve started to have a bit of a grasp on what the improvements look like. I’ve gained more freedom – I no longer have to take emergency stoma supplies everywhere I go, I don’t have to worry about ordering supplies from awful people that manage our supply program in WA, I’m not at the whim of Australia Post to deliver important supplies when I desperately need them. I gain normality. Yes, I know I’ve whinged about normality, and I did actually enjoy being different in some cases – but the ability to blend in was dearly missed. I went to Sydney two weeks before my surgery and the nightmare of navigating airports with my stoma really solidified the decision to have this second operation. If people who have (supposedly) received sensitivity training and education on disabilities coming through security are terrible to you, how are others meant to handle it? Once I’m fully healed I’ll no longer have to second guess myself when lifting things, or brace my belly on any sort of physical exertion. I won’t have to be worried about being punched in the stoma anymore by drunk friends with exceptional aim. I get to wear my tighter pants again! I get to move on from this disease.

But do I want to? For better or worse this surgery means moving on, but what about the parts of my identity that have been tied up with it? What about Sunny Guts? It’s glaringly obvious that I write more when I have more to write about, and I have more to write about when things aren’t going well. If the pouch works really well then what do I write about?


Have I lost something that made me special, am I just a normal boring dude now?

These questions rely on two assumptions – firstly that I won’t struggle or have setbacks. That’s a pretty silly assumption, and while I hope for the best I absolutely expect to face some difficulties along this new journey with my new pouch. Secondly, why can’t Sunny Guts exist without my disease as this niche topic? I think I’ve branched into writing more about my mental health lately more than anything, which is a pretty universal topic. The idea of mental wellbeing impacting physical health and fitness is super interesting to me, is something I think is sorely missed in society and health spheres, and is something I’d love to explore and write more about.

So while there’s a good chance we’re nearing the end of my journey with ulcerative colitis and surgery I’ve been through to fix it, the show goes on! There are so many things out there to learn and to experience, and I’m excited to be able to write about them and share it with you here.

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