Day 9 post pouch: When things don't go to plan

When I originally started this blog, I had a pretty naive view of what this operation would actually be like. I thought, "My last one was an emergency. It can't get tougher than that, can it?" I imagined this time would be a bit of a breeze - all planned, all to schedule, posting cheery updates every day or so with happy selfies about having my first meal, dealing with the new loop stoma, and pretty much sailing around the hospital ward over the moon that I was a step closer to the J pouch I'm aiming for.

I was wrong. Like, really wrong. This surgery has not only ended up tougher than the last, but my experience with it has been really quite scary. I'm in pain, I've got no energy and the meals I thought I'd be wolfing down I'm eating in tiny, bloating bites as my bowels wake up and slowly get moving again. I've been in hospital for nearly a week more than expected. I've not even felt ready to talk about what's happened with family, let alone blog it.

It's probably important to note here that I'm no longer an example of a 'smooth' J poucher. That's totally okay, but please bear in mind that's what happened here is very rare. People don't get this a lot. Please don't let this put you off. This operation still has a 95% satisfaction rate, and a 90% success rate. Surgeons are extremely highly trained and know what they're doing - you're in brilliant hands.

So what happened?

My actual surgery, Tuesday 9th, went brilliantly. It was short, uncomplicated and all done keyhole thanks to my awesome surgeon. The next day I was buzzing. My post op selfie was surprisingly on point.

The next few days were good. Friends came to visit. Everyone was really happy. My pain levels were pretty low, and I'd even started eating. So when I got a bit more tired towards the weekend, I put it down to needing better sleep and taking it more easy. There was talk of sending me home by the Saturday.

Then by Saturday evening, the bloating started. I'd passed a bit of blood but nothing too major. That's kinda normal anyway. It was only in the early hours of Sunday morning when I woke up with crippling pains and a sense of pressure in my stomach that things began to go wrong. I stumbled out to the loo, and passed out in the cubicle, pulling the call bell. I was bleeding heavily from my bum and new Stoma bag.

The next day was a blur. I was out of it, while examinations and CT scans confirmed an internal stitch had broken, causing massive bleeding. I received several blood transfusions and was pumped full of clotting agents. The scan also found that all the bleeding was coming from between the distal stoma end (between Stoma and bottom) and my bum, and the upper part of my bowel was healthy. This was an important distinction, because had this been different, I may have been looking at pouch removal and a permanent Ileostomy in the next few days.

According to med journals online, this sort of complication happens to 3 in 100 lucky people.

Over the next few days, I was put on complete bowel rest with an NG tube. My catheter was reinserted along with a rectal drain. I had oxygen, saline, wires going pretty much everywhere. These were some pretty bad days.

Since then, I've gradually improved, losing drains and wires one by one. Yesterday I started eating again, although my bowel is still waking up, so my bag is super fluid and I've got a lot of gas pain. My incisions don't really hurt much anymore though, which is a huge plus. My new Stoma is a little tricky to get to grips with due to its much flatter shape - but it's definitely easier than learning from scratch. 

My surgeon and his team have been absolutely amazing and totally dedicated to my care. I owe my life to them this week. Their quick decisions and good judgement meant Ive not only recovered, but I'm bouncing back. I'm now looking at Friday to maybe get home, and I'm being kept in observationally to check that the internal bleeding has well and truly stopped. I'm still passing old blood, but that's just stuff in there that needs to come out, it's nothing fresh. I'm absolutely exhausted and knocked for six, and spent today watching Disney and sleeping.

My lovely post surgery 'beak' aka NG tube

This experience has taught me lots of things. First off, while I'd love the chance at a pouch, if it all goes wrong and I end up with a Stoma for life, I really do not care. Genuinely. Having a Stoma is not a huge deal, and I've lived a perfectly normal life with one. When I was at my weakest, all I wanted was them to save me, bag or no bag. At that point my end goal changed. Sure, I want this pouch. It better bloomin work after all this trouble, but I've accepted that there's a slightly higher chance that it won't after my complications. That's okay. I'm here. Whatever is out there I'm happy, as long as it's living to the full.

And while I'm still going to be the same positive person, I'm stepping down off my soap box a bit. This surgery isn't the be all and end all. Some people would prefer permanent bags - a concept I found weird before, but totally understand now. Some people do not want to take this journey. That is perfectly okay. And while I'm still looking forward to the journey ahead, I know that while I'm strong, I'm not invincible. Sometimes things won't be all smooth and easy - sometimes this journey will be damned hard. But I came here to be honest, and honest I will be! This blog isn't a 'go out there and get a pouch now' blog, it's an honest reflection on pouch surgery, the good AND the bad.

Me and the boyfriend!

Big experiences change us. This has changed me. But this disease will still never beat me. It might try and kill me several times, but I'll be right back there kicking when it does. 

Today, my boyfriend took me in a wheelchair down to the hospital Costa. We got shakes, and sat in the sun in the hospital car park. It was a really small outing, yes. But I loved it. I'm appreciating every moment right now. Here's to many more.

My first outing - to the hospital car park