Sunday, 9 October 2016

Not entirely to plan...

Update time! 
The good news is the little hole in my tummy wound which had opened up, is slowly healing. It's being covered with dressings and looking more filled in than it did before so fingers crossed that's on its way to healing properly. The bad news is, as is apparently common & I knew might happen, the bottom/tail end wound has opened up. Initially the nurses thought the opening was 2cm X 1cm and about 0.5cm in depth. After seeing a member of my surgical team, it turns out it's actually 4cm X 1cm and more like 3cm deep. It's basically where the wound hasn't sealed together, and come apart. It sounds awful but luckily feels more uncomfortable and sore rather than actual pain. Then again, I have a high pain threshold and have experienced a lot, lot worse in the past few weeks, so I think I'm just used to it.

It was Mum who first noticed it and once the nurse took a look and confirmed, she packed it with a special dressing. When she arrived she didn't quite know what she was walking in to and so didn't have all of the right stuff. This meant that for the first 48 hours it didn't have the right dressing on. On Wednesday, a different nurse came back to the house armed with all of the right bits and packed the wound. Packing basically means filling the wound (space) with special sterile dressings that are soaked in things which help the wound heal. As I'm sure you can imagine having dressings packed into an open wound isn't the most comfortable thing to experience. To stop them falling out, I've also had a big plaster like dressing stuck over the top and then tapped in place. It feels very weird and not all that great. The packing only lasts about 24hours before all the fluid the wound is producing leaks through, and that is as pleasant as it sounds. 

I contacted my surgeon at the first sign of things going wrong and the reaction from his whole team was amazing. I had a response within 24hours and was organised to see a member of his team for the following morning. This meant that Mum & I headed up to my hospital for 8:30am on Thursday morning. It wasn't an official outpatients appointment which meant I had to meet him on the ward I stayed in after the op. Going back felt bizarre and I got really paranoid that they were going to decide I would need to stay in & I wouldn't be able to leave. Whilst Mum and I were waiting, the bottom wound leaked through the dressing followed five minutes later by Margaret leaking. I felt like some kind of gross liquid was coming out at all angles, definitely not my most attractive moment. Leaks with Margaret are normally really, really rare, it's just because she's had a face lift and is new & improved that she's taking a while to settle down. I managed to do a quick patch up with some tape to get through the appointment before having to change the bag after it. I didn't have a lot of bits with me to change it nicely but the ward has a Stoma Nurse office in it so there was a cupboard full for me to pick from. I guess if you're going to have a leak, the best place to have one is 5 meters from an office of experts and all the ostomy supplies I could dream of. Having to change it also meant one of the stoma nurses could have a quick look, make sure everything was alright and help me re cut a new template for my bag. Silver lining to every leak eh! 

The Dr I saw was brilliant, he's someone I saw the week before my surgery, the morning of the op and pretty much every day in the hospital following it. He was also in the operating theatre assisting/observing my main surgeon. He knows my case really well which is reassuring and I trust him. The first thing he did was let me know the results of all the tests on my removed bowel. I 100% have Crohn's Disease. It sounds ridiculous, nearly 9 years after my first diagnosis, but I do know of people who only find out after having their bowel removed that it's actually Ulcerative Colitis they've had all along. He also confirmed there was no sign or cancer or any other nasties, not that that was ever a concern but it is still reassuring to hear! 

He then thoroughly checked out the wound and a nurse re-packed it for me, noting down everything she used so the district nurses coming in to the house could use the same 'materials'. Luckily the surrounding skin looks really healthy and clean and so he doesn't think there's any sign of infection, although it has been swabbed to make 100% sure. It's been decided that the wound will need packing/dressing every day to try and get it to heal. This means having the district nurses come to the house every day to sort it out for me. The healing time is the depressing part, I'm looking at months not weeks. It can potentially take a really, really long time. I asked if he thought 3-4 months and he said he couldn't really say, it's different for everyone. If this packing method doesn't work there are more drastic wound management things they can use, such as a wound pump, which kind of vacuum packs the wound. Then there's further surgical options which right now I'm not thinking about. The nurses will be keeping an eye on it every day and I'll have regular appointments with my surgeon until it's sorted. 

It is something I always knew might happen, in fact it was more likely to happen, than not. My surgeon warned me from the very start that it is a common issue and that healing the bottom end can be really tricky. Even as I left hospital he reminded me that just because it looks great now doesn't mean in 3-4 weeks time it will be. Sure enough, 3 weeks later, the wound has broken down. The man's a psychic. 
There is always the hope that it won't effect you but the awful state the Crohn's was in that area doesn't make healing easy. I've done everything they've told me to and followed all of the advice, but I guess it's just one of those things that is 100% outside of my control, which I really struggle with. Although I knew it could happen and the Drs at the moment don't seem overly concerned it still feels like a set back. It's sore and makes walking harder, let alone the incredibly irritating dressing stuck in between my bum cheeks. Although it could be worse, the thought of having a dressing there every day for a while is a little daunting. There is also, always the risk that is could get worse, rather than better but  I'm determined to try and stay positive and keep doing the little things I can do to keep healthy; eating well, resting & building up my exercise as much as I can. 

I also had my 25th birthday this week! Mum and Dad had had to go back to work after taking time off when I was in hospital and when I really needed help after getting discharged. I obviously can't really get out the house so spent the day watching TV box sets and good films. Dad had decorated the lounge with banners and balloons which made it a nicer place to sit in all day. A lovely lady I've known since I was in primary school came round and did my nails, which was so, so relaxing, I felt really pampered. One of my neighbours has also been popping in every day, which is lovely of her. Once Mum & Dad were home I opened my gifts, ate cake and got a takeaway Italian, as I still can't sit down so couldn't go out for dinner or anything. It was a very chilled, un-eventful birthday but was still a nice day & I plan on celebrating a bit more once I'm feeling better. One of my gifts was a Fitbit, something I've wanted for a while. I think it's going to be a great motivator whilst recovering and once I'm able to start exercising again will help me track how my fitness improves. At the moment my goal is to do just 1,000 steps a day which so far I have managed to do. In fact today, despite the annoying dressings I managed my longest walk yet!

We'll see what the next week brings...
XXX 

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