Hello all! It’s been a weird couple of weeks with some painful and very unexpected twists and turns, but I finally am beginning to hope the worst is behind me.
The surgery itself went well and was a success. They managed to remove the infected metalwork and the bit of bowel that has been causing all of my problems over the past year or so. There were a couple of weird plot twists though, which I guess really shouldn’t have been a surprise considering my ability to get every single complication possible (and sometimes even not possible) from even the simplest procedure.
They opened me up from the front and back again, for old time’s sake and also for some other reasons which I will go into in a bit. From the back they removed all my metalwork, bar a couple of pieces. The first piece we knew about, and is called the cage, which sounds like an ITV evening programme hosted by Philip Schofield but is just a bit of metal that’s supporting my spine so I can move around (hence the keenness to keep it). The second piece, a screw, they didn’t remove because it was so well and truly stuck into my bone they literally couldn’t unscrew it. The idea of having some metalwork left in there stresses me out considering the entire point of the op was to remove it all, bar the cage, however I have been assured that the screw is not infected because infected metalwork always becomes loose. Apparently all the other screws were super wobbly and already coming out on their own, whereas the tight screw was so stuck in that the head broke off before it loosened. Turns out I literally had a screw loose
They also got rid of the bit of redundant bowel that has been causing all my problems, which also means I have no hole in my stomach any more (at least I won’t once it’s healed up) and no hole in my back. I finally have the correct number of holes, all correctly located. Yay.
The final bit of the op is a bit of a weird one and involved the plastics team getting involved. Where I had chronic infection around my fistula, with infected mucus or blood coming out of it, for such a long time, the skin and tissue had been eroded to the extent that they were concerned about the skin being able to come together and heal on my back. So they did what anyone would logically do in that situation: they cut out one of my abs, sucked it through to my back, turned it inside out so the skin was on the outside, and sewed it there. I now have a five pack on my front and a one pack on my back, and it’s called a muscle flap. Yes, it’s amazing they can do shit like that and I’m so glad I have such a talented team who can. Yes, it is fucking weird and it grosses me out a little that I have an ab on my back. Right now it’s still swollen and so it does bulge out like a muscle, or a bulbous chicken fillet, but apparently over time it will settle and just look like the rest of my back – or at least, that’s the plan. The only thing that confuses me is why, if I poke it, it doesn’t feel like I’m poking myself in the stomach.
So the surgery went all lovely and smoothly, apart from one bit when they removed a screw and I started bleeding, a lot, but they managed to stop that pretty quickly so no one was worried. Two days post op I was sitting on the edge of my bed in intensive care – quite the contrast to my hemi sacrectomy, after which I had to lie completely flat for five days. Things were all looking good.
However, a day or so later I was sat on the commode and I shifted my weight slightly from my right onto my left hip and Oh. My. God. The pain! I was writhing around screaming, trying to get into a position that eased the pain but nothing was helping. My left hip literally felt like it was dislocating and all I could do was try desperately to get into a position where it would pop back in. I would finally get in a position on my back, however due to the muscle flap I was not allowed to lie on my back, and so I would have to go through the entire process of trying to lie on my side and then my hip popping, me screaming and so on. Finally, the pain team prescribed Entonox, which I can tell you has been my best friend over the past couple weeks. It genuinely has made, coupled with copious amount of oxycodone, the past couple of weeks bearable, because I can tell you it has been a fucking painful sixteen days and something was needed to take the edge off.
Anyway, a day or so after getting this terrible pain and it getting, if anything, worse, I was sent for a CT scan. My surgeon had told me they expected I had irritated my left sciatic nerve, and it was that that was causing the sensation of my hip dislocating – apparently hips don’t just dislocate that easily. They weren’t worried about anything alarming or dangerous, but they still wanted to confirm it was the trapped nerve. It’s weird being told your medical team aren’t worried about anything ominous when you get serious pain. It’s bittersweet because although you’re glad it’s not an issue that’s going to make you sick or kill you, equally you know it means they’re not going to be as desperate to resolve it, when in your head even major intervention like surgery would be worth it because you’re in so much pain.
So the day after the scan my surgeon’s registrar came in to break the news, and boy did he do it like a grade A douche. He came in whilst I was on my own with a nurse, looking all pleased, not a care in the world, and told me the official report of the scan had come back. “Even though I looked at it last night, I couldn’t tell you before,” he said, “because the radiologists hadn’t officially reported it. I managed to see everything they did though apart from a couple things, so I’m feeling pretty pleased with myself.” Obviously this seems quite an upbeat opening, so I’m obliviously sat there pleased there’s nothing too serious. After all, how self involved would you have to be to come in to tell me bad news and open with a self congratulatory brag about your scan interpreting skills?!
And so he continues, lightheartedly ticking off his fingers each of the health issues the scan showed up:
1) Trapped nerve between left hip and pelvis that is causing the pain – “not much we can really do about that.”
2) A small pocket of fluid, could be blood or pus, most likely infected, in my pelvis.
3) Discitis, which is when the mortar holding the discs together in your spine begins to crumble because of long term infection.
4) An enlarged right kidney.
5) A pseudo-aneurysm in my right iliac artery.
Obviously that was quite a lot for me take in because whatever I expected to show up on that scan (and I know how weird and wonderful my body is) the last two or three on that list were, without a doubt, not included. But yeah, well done to him for spotting an aneurysm. Ass.
And it was extra disappointing coming from him because we had shared poop accident stories; turns out telling someone about shitting oneself in public does not necessarily guarantee their empathy. Who knew!?
So after that, the pseudo aneurysm became a major priority. I needed to be transferred to The Royal Free so I could have it sorted in their vascular department, which took a few days to get organised. And I’m not going to lie, I was tearing my hair out. It’s ridiculously hard to keep motivated when you’re recovering from major surgery when you’re told you’re not allowed to walk or do any physiotherapy, to minimise any risk of the aneurysm popping, and that any other issues are being put to bed until the aneurysm is sorted. I wasn’t progressing at all, and I was actually being told I wasn’t allowed to progress. I felt as though I was just stewing away in bed, powerless, whilst the hospitals were faffing around finding me a bed.
Finally, after what felt like a lifetime but was actually only a few days, we were blue lighted over to The Royal Free, my home away from home. The next day I had a couple of stents put in, accessed through my groin area under x ray. It took around five hours and I was awake for it, or more accurately I was awake for brief spells in between the sedations I needed when it became too painful to lie on my back because of the previous surgery. I guess it’s the only procedure I’ve had where I have needed a little help to get off to sleep, rather than me relying on my sheer laziness and love of napping to send me off. The team were really great though, making sure I was sedated when I needed to be and constantly keeping on top of any pain I was in.
The team thought the aneurysm was most likely caused by irritation to the artery during the surgery, specifically when there was that heavy bleeding as they took a screw out. Whatever it was, I’m glad it is sorted. The only disconcerting thing is that the team told me there’s around a 50% chance the stents will become infected, meaning I will need the stents removed and the arteries properly patched up with another operation. They’re scanning again in a couple of months to see what things look like, so fingers crossed when that day comes, it’s all clear of infection.
Once that was done and dusted, the other issues began to get sorted. The kidney is a watch and wait type thing, where they’re just going to scan in a couple of months to see if there’s any change. I had an enlarged right kidney previously on a scan last year, so maybe it’s just the way I’m made. I don’t know if it’s a thing for people to have one heftier kidney!
The discitus thing can be treated with a long course of antibiotics (which I’m hardly new to) and Mr Lordan (my lovely abdominal surgeon who is one of the best people on this earth) said he’s not worried about the small pocket of fluid. Although the trapped nerve can’t be treated so to speak, only managed with neuropathic medication and pain killers, the pain is getting much better, and by stretching out each day I’m finding that I can move more and more without experiencing severe pain, and that my range of movement is greatly increasing. So that’s all nice and encouraging.
On Friday I was brought back to Stanmore from The Royal Free and put straight on the ward, as opposed to intensive care/high dependency, where I had been before. Today I also walked for the first time since the op, which for me, and I guess it would be to anyone really, is a massive deal. I don’t feel like I’m acutely post op anymore, I feel more as though I’m in a rehabilitation stage. Although I’m still on a hell of a lot of pain killers, racing around on my lightning speed zimmer frame and going just outside the ward so I could get a breath of fresh air has motivated me massively to get on, get up and get out of hospital so I can go home, hopefully for good!
I’m trying not to think too much of home because mentally I feel quite well in this hospital stay, and I don’t want to get myself down pining for home, Scout, sleeps where I don’t need my blood pressure measured every four hours, televisions with remote controls and my new, beautiful double bed that I bought just before I came into hospital and am yet to try out as it was delivered the day I was admitted. I think I might actually cry with happiness when I see it. I will also feel super grown up because I bought myself a bed. Coupled with the fact I’ve also bought shelves, a vase and a clock in the past year, I don’t know whether to feel mature or like an old woman. Whichever it is I’m not really bothered, because I can lie in my double bed, wondering at my vase and being absolutely 100% sure of the time, like a beautiful princess with an ab on her back.
For now, I’m just going to take things as they come and listen to my body. I’m someone who wants to push themselves as soon as I’m told the word ‘go’, but I know this time how much overdoing it can set me back if I were to irritate a nerve or something similar.
Hopefully I’ll get out next week, I don’t think that is too unreasonable to aim for. I’ll hopefully update again soon because I know for sure we’ve got some funny anecdotes to tell. Thanks for everyone’s ongoing support. It really does mean the world to us.