Hey guys, it’s been a while hasn’t it, but I thought it time to update on the big operation!
So I got a call on 5th January saying there had been a cancellation and asking if I could come in for surgery on the 6th. It was a big shock, but I agreed and headed in for 7am to the Northern General in Sheffield for my Jpouch removal and permenant ileostomy surgery.
I checked into the pre op ward, saw my surgeon and anaesthetist and was taken down to surgery at around 9am. I was having an epidural inserted for post op pain relief and unfortunately, it took a while, 7 attempts in total! The anaesthetist was great, very friendly and warm, he chatted and apologised for the complications. He’d actually been my anaesthetist for the last big surgery and we’d had no issues previously. I’d had plenty of local anaesthetic though so it was not painful at all. These things just happen sometimes!
So once that was in, I laid back and they began putting me under, I literally don’t remember a single thing! No counting down, just bang and out.
I awoke several hours later in recovery, I had zero pain and was just very, very tired. I ended up staying in recovery for a good few hours as my blood pressure was at 80/50 and there were concerns that it was too low. The nurses were lovely, I was just really dozy and sleepy and so I’m sure it was more worrying for others than me as I was snoozing!
I was taken up onto the ward and Timm was there waiting for me, I was totally out of it but pain free and happy. I don’t really remember much of his visit apart from being happy he was there. Apparently he took photos though!
The first couple of days went on a blur, I had an epidural for pain relief plus IV paracetamol, antibiotics and fluids to bring up my blood pressure. I was a mass of tubes with three IVs in two canulas, oxygen into my nose, a catheter, a drain from my stomach and the epidural tube. I had two big dressings on my tummy and my brand new Stoma. To be honest, it was all a bit much to take in.
Whilst I had the epidural in, I had no pain at all. But on day 3, the epidural came out and things all got a bit trickier. It was very painful but I had all manner of oral pain meds and it started to get under control. Mr Brown came to see me and said the op had been a success, that it had taken a long time and had been complex but he’d expected that. He was happy with the outcome and now I just need to recover from the op.
So what did they do?
My Jpouch, which was a bag formed from my small intestine and connected to my rectum, was removed completely. They then took out my rectum and sewed up my anus. I’m now the proud owner of a Barbie Butt! I have no bum hole!!!
He then formed an end ileostomy, this Stoma is on my right side and is permenant. So now I have my bag for life. The recovery has been hard going, I came home after 5 days and have been recouping in my own bed, which is so much better than being in hospital.
I have a few wounds to be dealing with so its quite tough. I have the wound in my bottom which feels like I’ve been kicked in the undercarriage (high five for using the word undercarriage), my wound in my stomach is 17cm long and goes from the top of my belly button straight down into my groin. This is painful and when I stand, it feels like everything is going to fall out! The top inch has opened up and so it’s being packed and dressed by the district nurse twice a week. Then there is a 1.5 cm wound in my stomach where the drain was, this needs to heal from the inside out and so is open and slowly drying out.
Then there’s the new Stoma.
I am struggling. Mentally and physically.
Physically, I know what I’m doing and how to change bags and so that part is ok, but the stoma has come away from the skin on one side and has left a big hole into my abdomen. This is painful and makes it hard for the bags to stick. The Stoma nurse says it happens sometimes, not to worry about it and that it needs to heal on its own. I can’t help but be concerned that it’s getting poo in it and will get infected but she says it will be fine.
This, in turn, has made my skin around the Stoma very raw, like an open sore. It hurts a lot and makes bags not stick so I then leak. The leaks are soul destroying. There’s nothing more dismaying than being covered in your own shit. It makes me cry and feel desolate.
I had a massive leak and couldn’t deal with it alone, I needed help to get my clothes off, I had to shower and I needed Timm’s help, though I didn’t want it. I cried as he sat me down and peeled off my soiled clothes, begging him to leave me to it, even though I know I needed the support. He was calm and loving and wiped away my tears, telling me everything would be OK.
I’m kind of surprised by my struggle. I thought that because I’ve had a Stoma before, that I’d be fine with it. I’m not.
I don’t feel ready. I change my bag but I hate seeing it, looking at it, touching it. I wish I could ignore it completely. I know this isn’t my usual happy and positive stance but it’s important that I’m honest. And honestly, I feel sad, angry and frustrated.
It’s the knowledge that this is forever that hurts. That now there’s no going back and that till the day I die, I’ll have this bag. I want to scream that it’s not fucking fair. I’m angry that this is the hand I was dealt, pissed off that I can’t have a normal, healthy body.
It’s early days though. I’ll learn to accept this and adapt to my new life. You know why? Because I don’t have a choice. I don’t want to feel this sad forever and so I’m going to have to learn how to be happy with this change.
After a week at home recovering, we got some news that has shook everything. My grandpa passed away this week. It was unexpected and is a huge blow to us all. I visited my mum, nannan and family, though it was physically tough, I was in a lot of pain and had a terrible leak on the way home but I’m glad I did as it felt right to be in their home and surrounded by family.
So I am home and recovering. I am an impatient patient, I just want to be back up on my feet and doing everything, but I know that I need to listen to my body, rest and heal. It is so good to be back in my own bed rather than hospital, I have had so many lovely visits from friends and family. Timm and the kids have been brilliant, and whilst Timm was at work last week, my awesome friend Caroline came over and looked after me for two days and then my mum came for four days. They’ve cooked, cleaned, looked after the kids, cared for me and just been fantastic. I couldn’t thank them more, they are both brilliant.
You don’t know just how lucky you are to have friends and family till you are broken and in need, we have both been blown away by the love that has been showered on us all as a family since the op. We had three friends come over to the house when I was due out of hospital and cleaned up for us, changing bed sheets, hoovering and leaving my bedroom welcoming with flowers and candles. We’ve had meals delivered to us, movies sent, chocolates, cards and flowers as well as people just coming to visit and sit with me. Honestly, I am humbled, thank you to every one of you.
I have also had so many emails, messages, texts and phone calls from friends, family and readers of this blog, thank you so much, it means so much.
And so now I am just at the stage of resting, recovering, nurse visits and healing. I still have quite a bit of pain and I’m on painkillers but it’s not so bad, I am still sleeping a lot and being upright and walking is hard work, I am sitting on donut cushions and have a million pillows in my bed to prop me up and surround me in order to get comfortable. It is flustrating (my new word garnered from watching two whole series of Hell’s Kitchen, a mix between flustered and frustrated!) to be unable to just get up and do all the things I want to. We are due to move house and so I really need to be packing, but I am instead pointing and things and asking others to pack for me.
But I will get there, I am sorry for my lack of blogging, this surgery was so big and scary and the recovery so tough, that I needed a little time off. During the last operations and recovery, blogging had felt like therapy for me, this time I needed a bit more head space, but I am now back and will be writing about my recovery and life as So Bad Ass with a vengeance!