After waiting on the plastic surgery ward for almost 11 hours, I was finally called down to surgery at about 5 pm. I was so relieved that something was finally going to be done about the ridiculously large open wound I’d been living with for a few weeks now. But unfortunately, things didn’t quite go to plan, yet again. As I was waking up from the anaesthetic, I knew immediately something was wrong. Usually you come to in the recovery bay, but I was still in theatre and looking up at one of my surgeons. I’m not going to lie, initially I panicked a little that I was experiencing one of those “anaesthesia awareness” episodes mid-surgery like Hayden Christianson in Awake. Luckily, this wasn’t the case at all, they just woke me up earlier as they could not perform the surgery as planned. It turned out that the infection that I’d had since February (it was now December 6th) was STILL wreaking havoc in that general area and killing all my healthy tissue. That was probably the reason why the initial stitches after my pan proctocolectomy had just disintegrated. All they could do was essentially make the wound even bigger by removing all the damaged tissue and cleaning it up before re-attempting the planned surgery in a few more days.
Given all this drama, my ward bed was lost, so I had to stay in recovery until about 3 am the next morning. This was all very unusual as patients are typically only there for an hour or two and are immobile after their procedures. I, on the other hand, had already woken up in theatre and needed to get about to use the toilet and brush my teeth; this proved challenging as there actually isn’t a toilet in the recovery bay given that people don’t generally need to use one, so I had to trek to the staff area instead. The recovery bay also doesn’t have a food round, so all they could order for me that day was some stale toast. Ew. I was eventually moved however to a singular side room (yay!) on the gastro ward and was given antibiotic injections to stem the infection before they tried the surgery again. This “between surgery limbo” wasn’t overly pleasant given the now even more gaping hole in me, and the fact that I wasn’t prescribed any pain relief other than paracetamol! But what can I say, I am used to pain- plus I’d had some terrible experiences after stoma surgery with opioids!
Four days after the initial try, I went back down to theatre for attempt number two. Luckily, this time was successful, and I had what is broadly known as SGAP surgery- or more precisely, VJ advancement- right sided superior gluteal artery perforator flap. If you haven’t read my last post explaining the general procedure technique, it involves moving living tissue from a donor site to a recipient site while maintaining blood supply. A similar flap technique is sometimes used after a mastectomy to reconstruct the breasts. In my surgery, the tissue was lifted from my left butt cheek and rotated to fill my perineal wound. I had the usual set-up upon waking up: a urine catheter, two surgical drains (one near my right hip and one near my lower back), several cannulas etc, and I was lying in the position that I would become very accustomed to: on my left leg.
In the first few days after surgery I was told that I could request tramadol if I wanted it. I was obviously very sceptical about this given my previous withdrawal symptoms, but I thought I’d try just once because I was in a lot of pain now. And not just general I’ve-got-a-huge-open-wound pain, but also my-left-leg-is-being-perpetually-crushed-by-my-entire-body-weight-and-I-can’t-move-at-all-to-appease-it pain. This immobility and unequally distributed pressure coupled with my arthritis was one of the biggest struggles of this hospital stay. But even after just one small dose of tramadol, I turned shivery, sweaty, boiling hot and weak, so I quickly aborted. Meanwhile, the plastics team, who were incredibly diligent I might add, were visiting me every 4-6 hours to check for any discoloration on the flap which may suggest that it had been rejected by the new site. The surgeons had also left a small unstitched gap at the very top of the flap to allow it to change in size and adjust to fit the new location, so they also had to check that this wasn’t getting infected.
For the next couple of days these checks continued and I went on (like I champ if I do say so myself) without any pain relief whatsoever trying to distract myself from the obvious, as well as my dying left leg, by playing (or should I say winning) scrabble against my parents at an incredibly awkward angle on my bedside table. Every time a nurse was assigned to take care of me they’d ask why my drug chart was blank and I’d explain all the issues I’d had with morphine, tramadol, fentanyl, codeine and oxycodone (i.e. they don’t work, they make me feel like I’m dying and/or they break me out in weird rashes/ make me lose my mind). They’d promptly leave me be and say that there wasn’t anything else I could try and that if I didn’t want those drugs, I would have to do without any. That was until Friday 13th December when one particular nurse was beyond shocked and annoyed on my behalf about my lack of pain relief; I believe her exact words were: “If I’d just had half my body carved up and put back together again and someone offered me PARACETAMOL, I would tell them to **** off!” After I explained my complicated relationship to opioids, we decided that the best thing to do was to re-try oral oxycodone every 4-6 hours alongside some anti-sickness (I only took oxycodone once after stoma surgery and seemingly it did absolutely nothing, so I figured it wouldn’t do as much harm as the other drugs).
The following day one of plastic surgeons came as promised to stitch up the one/ two-inch gap at the top of the flap. Originally I had been told that this was usually done in theatre, but given my inability to move, they could do it in my room under local anaesthetic. But when my surgeon arrived, he then revealed that because of the flap’s awkward location, the anaesthetic injection may not be effective, and it might even hurt more than the stitches. He said if I really thought I could, that he would prefer to do it without any anaesthetic at all. Easy for him to say! But in the end I just went for it because I knew it needed to be done. And boy did it hurt! They weren’t just normal surface stitches either, they were deep tissue stitches to hold that section of the flap in place. I think there were about 10 loops in total and I was definitely flinching and clutching the bed the entire time. The nurse who was supervising said how impressed she was that I managed to get through that without any anaesthetic and when I told the nurse several weeks later who took the stitches out in a plastic’s clinic, she looked like she’d seen a ghost and asked: “WHAT?! Why on earth would you do that!?” But I did and it was done, pain aside. My surgeon also removed one of my drains as it had been several days since the surgery and it had stopped leaking- that was another unpleasant experience akin to the drain removals after my pan proctocolectomy i.e. a lot of strong air pressure building up and then suddenly being sucked out at full force from inside your flesh. Lovely.
Despite my general post-surgery pain and my dying leg, I was coping far better than after my stoma surgery. Unfortunately however, residing in my private room didn’t last long. I was moved on the 15th to a bay. NOOOOOO. As you’re probably already aware if you’ve read my previous posts, I HATE being on a bay- as everyone in their right mind should. As it was, the side rooms weren’t exactly “quiet”; a couple of nights before I’d heard a loud mid-night riot caused by a patient’s family member who was furious that the patient in question was being moved to another ward. Security had to be called as he started verbally abusing the ward nurses and threatening a fist fight. Ah, there’s never a dull moment on a ward is there? But now all the usual culprits were keeping me awake: the nebulisers, the phones, the printer, the laughing/ shouting/ singing nurses, the confused old people screaming etc.
It was unfortunate timing as well; I really could have done with the sleep as I was supposed to be mobilising on the 16th after almost an entire week of being in bed. Now, mobilising after stoma surgery seemed more difficult in theory given that I’d been in bed for 2 weeks. But in fact, I was able to move my legs slightly and I was lying on my back which meant that the pressure was evenly distributed- plus my epidural numbed my legs completely, so I couldn’t feel them even if they hurt! This time, though it had only been a week, I had been lying on one leg without moving at all for the entire stay and I could definitely feel it! But because of my stubbornness, I rejected the offer for a physio to assist me given that last time she was there more for encouragement than actual physical aid. I also told the nurse who offered me an OAP walker that I wouldn’t be needing it. How hard could walking after only a week of lying in bed be? Apparently, very. After having one of my cannulas and my urine catheter removed, my mum and I prepared to make it to the toilet- as now I would have to brave a sitting action as well. Getting up was actually far more difficult than I’d imagined. I mean, naturally you shift onto your bottom and then just stand up, right? Except I wasn’t allowed to put any pressure on my bottom at all! So, I had to do an awkward side-wards slide with the bed as close to the ground as it could go and sort of roll off the edge and stand up whilst also holding onto my remaining drain bottle/ tubing.
After I managed this, I did admittedly get a little cocky and after walking on the spot for a few minutes, I thought I was ready to walk towards the loo with my mum’s shoulders for support. In reality, I only made it about 2 steps before being overcome with so much dizziness and weakness in my left leg that I thought I was going to collapse. Naturally, we very abruptly turned tail and quickly (but carefully) placed me back into bed to recover. I had a bit of a reality check at that moment: perhaps walking was going to be more of a challenge this time. After another 10 minutes, I tried again. And very slowly, and with a lot of assistance, I managed to make it to the toilet. Although it was hard work and I was a bit unsteady still, I cannot express the relief I felt to finally take my body weight off my left leg and hip! And I did successfully manage to bend enough to reach the loo without stretching the flap too much. I experimented a bit more that day and was glad to finally be able to independently go the loo- I just needed some help getting back into bed.
The next day, December 17th, was my last day in hospital. I had my final drain removed and my surgeons essentially forced me to have a shower, despite my worries about the flap getting wet. I think they knew how badly I wanted to have one as I hadn’t been able to since the wound split about a month before; I’d had to clean myself in the sink standing up and my mum had had to wash my hair with a precarious set up at the base of our shower using my bed wedge and some Inco sheets! It was certainly resourceful! In the end I did manage to have a wash in the ward shower, and it was amazing! (Not the actual shower- it is in a hospital after all, but the experience of having one after so long was lovely!) By this point I’d also stopped taking oxycodone, which I’d been having on and off for the last few days. So that morning I was given the all clear to go home. Annoyingly, the transport that they had called for at 10:30 am took until past midnight to arrive! I believe this was because I needed a proper ambulance with a stretcher to lie down on. But it was more comfortable than being sprawled out on the back seat of a car nonetheless, despite the terrible suspension!
I was just so glad to be going home before Christmas. It was certainly an interesting experience spending Christmas day on a bunch of duvets on our living room floor as opposed to at the dining table with everyone else, but I still dressed up and made myself a nice Bolognese for lunch (I cannot stomach a Christmas dinner!) My dog kept me company (though I have a sneaky suspicion that he was just after my garlic bread…) and I was just happy to be there and not still stuck on the ward for the holidays! I was also grateful that, in spite of the initially failed procedure, the plastic’s team had taken such good care of me and had done everything they’d promised to do in record time. Now it was down to me to be careful with the flap for the next few months and not put any pressure on it (I either had to lie on my left leg or stand up- no sitting or lying on my back/ rolling over at night) to ensure that their hard work would pay off.
Me and My Crohn's 