Panprocto and life after

Hi all, following on from my last (and first!) blog I’m going to write about my surgery and life after said surgery.

I think it’s time to finally be open to everyone about the surgery I had. My operation was a panproctocolectomy – try saying that one right on the first go, props to anyone who does! This involves removal of the whole of the colon and rectum, therefore, resulting in an ileostomy  (formation of the small bowel coming through the stomach) and a ‘barbie butt’ (the passage where the rectum/anal canal would exist results in being sewn up). Throughout this blog and the rest, I’ll be referring to my ileostomy as either a stoma or Squishy (the name I gave it).

So, after waking up from surgery I went straight up to ICU (Intensive Care Unit). I had to stay there over the weekend due to the intense amount of trauma my body had just gone through (bearing in mind I was only 28kg)! Doctors and surgeons were worried about how my weight would impact my recovery so I needed a close eye kept on me at all times. I must admit I was tiny compared to the bed frame, I never realised at the time but looking back I can definitely see it. I had 8 tubes and lines in total. A central line which went into my neck – this had three ports, one for TPN, one for my medication and one for blood. A blood pressure line in my wrist, two cannulas, two lines in my stomach pumping local anaesthetic to my surgery area, an NG tube and a catheter (obviously). My family had come from London to wait with my mum whilst I was in theatre. They came in to see me once I was in my room in ICU. Ibriefly remember seeing them and a lot of tears were shed. After they left, I had two nurses who washed me and got me comfortable – this whole time I was in a daze due to the anaesthetic. My mum was staying with me overnight as in my eyes I was still so young and because I had just been through something major, everyone was okay with it.

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ICU was pretty much a blur for the first day and a half. The day after surgery I could definitely feel the pain a lot more since the anaesthetic started to wear off. The morphine button was my best friend, literally every 5 minutes as soon as the light in the button went green I pressed it. It took a while for the painkiller to work and after a whole day, I was able to be as comfortable as possible. However, after a visit from the surgeon I was allowed to sip on nutrition drinks, in this case it was Fortisip.

After the weekend I got moved to another wardthat specialised in colorectal care. The move had me feeling very uncomfortable and in a lot of pain. Despite being on paracetamol, codeine and oxycodone nothing seemed to help. Again it took a couple of days for the drugs to work. On my second day on ward L42, the nurses got me moving a bit more which would help my recovery. Of course, my new barbie butt was still so sore so I couldn’t lay or sit on my back. Despite this, with a lot of support from the nurse and assistant, I managed to roll out of bed and sit in the chair for a few minutes whilst my bedding was changed. I was drained but happy that I managed to do this bearing in mind I was still hooked up to many wires and machines. I still needed assistance whenever I wanted to switch which side I was laying on – the pain from the surgery was still very intense.  On this day my stoma also started working. This is something I wasn’t prepared for. So 4 days post op and I had my first visit from the stoma nurse. She came and dropped off some supplies which included stoma bags, adhesive spray, dry wipes, scissors and a stoma measure. She also spoke to me about what to expect now I have a bag for the rest of my life and talked me through how to change it. She was kind enough to say she’d be there to help me with anything for as long as I need it. That made me feel some kind of relief to a degree. So here came my first ever bag change. I held it together until the bag came off and squishy was there in his flesh. Reality hit me and I realised that I’ve just been through a massive change and now I have this thing for life. Although I managed to start emptying Squishy after a week, the first few bag changes I didn’t interact with, actually I ended up crying every time I saw him. It took me just over a week to come to terms with changing Squishy, I did it still with the help of the stoma nurse. After a handful of more visits from her, I was able to change my stoma independently, again another some sort of relief came over me as I made this achievement. The fact my stoma is small and kind of cute in a way helps.

I was in less pain now, the IV painkillers had been stopped and I was on oral medication and from day 5 post op I was able to eat anything I wanted. My surgeon – Mr Saunders said I needed to be eating enough orally in order for my central line to be taken out and I needed to be more mobile in order to remove the catheter.  10 days post op I got the go-ahead to have my stitches removed from my bum, ouch! Again, this was something I was not looking forward to, in fact, I can still remember that pain to this day. My surgeon was very impressed with how quickly and well it was healing, it was the same with my stomach and Squishy. Even I was impressed! After a long day of having my stitches removed the next job was to have my central line taken out, blood pressure line in my wrist and catheter. They allowed my blood pressure line to come out the same day from what I remember. Soon after I built up my appetite slowly but surely and had my catheter and central line removed.  So finally I was pretty much tube free – I had a cannula in my hand still which stayed in case it was ever needed. I still wasn’t able to sit directly on my bum but I was aware that could take a very long time. As days went on I became abler, I was starting to sit up on my own, get out or more roll out of bed and take a short walk with little assistance though I couldn’t stand fully upright just yet.

Day 14 and I was discharged, finally. It was great to be finally let home at the same time it was really daunting. Obviously, I wasn’t fully healed at this point, I’d been told it could take anywhere from 3 – 6 months for me to be completely healed.  Being at home was great, I was still off work but my manager kept in touch with me on a weekly basis to see how I was doing which was good because it would reassure me that my job was safe.

I’d never looked at my surgery site at my bum before, this was something I really struggled to come to terms with. The first time I did again, I ended up in tears. This time, it was from shock too. My wound had opened! That night my mum took me to A&E where I was referred to SAU (the Surgical Assessment Unit). A consultant inspected the site and as the wound wasn’t deeply open he decided to pack and dress it and let me go home. Since I had daily visits from the district nurses for my injections (Tinzaparin which is a blood thinner) they were able to keep an eye on my wound and repack and redress it every day. The district nurses visited for two weeks, unfortunately, my wound hadn’t healed by then. From then on I had to visit my practise nurse at my GP surgery every day.

So I had my surgery in January and it wasn’t until August my wounds had fully healed. It had been a long battle but I finally got there in the end.

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Love and light,
Guts, Giggles & More x

 

 

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