(Un)screw You, Infection

All the screws in this scan were removed, except one of the screws (don’t ask me which) and the cage, which is that block in the middle.

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.

My front scar is getting longer and longer. It’s super weird because my belly button is no longer in the middle because they took some of the tissue on the left for my muscle flap. Also that red circle on my right is where my mucus fistula was, which they left open because it will just close on its own now that my small bowel is not poking through it.

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.

Sexy sexy muscle flap. (Apparently it will not look so nasty and will actually look like the rest of my back in the end).

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.

My precious.

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.

Two days post op I was sitting on the edge of the bed. This was shortly before I had the serious pain that led to the scan that showed up all my other medical issues.

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!?

Waiting for the transfer to The Royal Free was not made any easier by the food selection at Stanmore. This is a photo of one of the pictures of “food” on the menu. It is hard to deduce whether it is a bowl of soup or just a red filled auto shape oval.

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 Royal Free, although they were amazing in every other way, did the worst every PICC dressing. Definitely not supposed to be that much blood!

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!

Me today with the physio, walking outside with crutches. Getting a bit of fresh air every so often during a long admission, or even just in a short admission, makes the world of difference to your mental health.

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!

Me saying good bye to Scouters.

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.

Me, looking like the thumb man, face timing Scout. (Actually was my dad who put Scout on the camera. Just wanted to make it clear I’m not a mad dog lady… not yet anyway).

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.

Me with my beautiful dozen of Krispy kremes. I was lucky enough to get some lovely get well soon cards from some very kind friends, including three beautiful homemade cards from the amazing Acker family.

 

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19 Comments

Allison Semikin

Beth, yet again you have overcome another shedload of pain and problems.
Your dignity during everything is admirable and I cannot stress to you how proud I am of you.
How you keep smiling, remain polite and grateful during all your medical care is something to behold.
I love you Baby Beth to the moon and back and all the way around and back again.
My Stargirl ❤️❤️❤️

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Lisa

Dear Beth, I’ve followed your posts for a while now but have not commented yet. Your mum worked at the school my children went to. I wanted to say you have an army of people behind you, me included, all wishing you the very best, all admiring you for the way you are dealing with everything life throws at you. I hope you’re out of pain soon and healing well ready to get home to be a crazy dog lady!

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Laura Krick

OMG! Beth, I am constantly amazed at how you persevere through these painful and tortuous complications. You are more than a saint! And seriously, after that opening, I think I would have said, “Um, don’t know who you think you are, but I can assure you, today, you are not as great as you think you are, because you have lost my respect when it comes to bedside care.” And OH, the blood in that dressing… and where is your SecurAcath? Oh sweetie! I hope it gets better faster and if there is anything I can do, anything at all (oreo cookies or hershey bars) just let me know!

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Pat Harmon

Beth, you are a totally badass warrior. Lordy, lord, girl! What a mess of stuff and complications you’ve been through! Unbelievable! Nothing wants to be simple, does it?? I’m so sorry that nothing about this has been simple and straightforward, and that your pain level has been off the charts. But I’m thrilled to learn you are up and walking and blogging and most of all smiling again. You’ve got this, girl. Onward and upward, and may it be nothing but improvement and healing from here. You’re a girl with an ab in her back, so nothing is impossible for you, you amazing wonder woman, you.
(Oh, yes, and a boot up the butt for that boneheaded doctor! Sheesh! What a self-important, obtuse, arrogant jerk! Can I come over and kick him in the shins on your behalf? I can get away with it because I’m a rude American!)
But for you, lovey, may your days be full of hugs, friends, and chocolate, and may your nights be full of sweet test and happy dreams. And may both be empty of pain!
Much love from tiny Rhode Island!
Pat Harmon

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Demara

I’m glad you are feeling better! I understand about getting every complication possible. I’m like dont’ tell me anymore! I feel like you are challenging my body to get that <1% complication. I hope you are home soon.

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Pamela Gardener

Well, THAT’S an amazing story. And I’m totally convinced you will soon be 100% well. I don’t know how such a tiny little woman can be the powerhouse you are, but there you have it. A flipping POWERHOUSE. But here’s is the 2nd most amazing thing about your story—YOU HAVE KRISPY KREME STORES IN ENGLAND!!! Who knew? Seriously, I’m just so happy you’re getting better. Much love and wishes being sent to GET BETTER — not SOON—PLEASE GET BETTER RIGHT NOW!

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Pamela Gardener

Well, THAT’S an amazing story. And I’m totally convinced you will soon be 100% well. I don’t know how such a tiny little woman can be the powerhouse you are, but there you have it. A flipping POWERHOUSE. But here’s is the 2nd most amazing thing about your story—YOU HAVE KRISPY KREME STORES IN ENGLAND!!! Who knew? Seriously, I’m just so happy you’re getting better. Much love and wishes being sent to GET BETTER — not SOON—PLEASE GET BETTER RIGHT NOW!

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Emily

Beth,
You are just amazing. In the face of all you have been through, your wit; makes me smile despite the horrific experience you are describing.
I have seen many skin grafts, from start to finish and can reassure you how normal it will all look in a few months time… And you never know back abs might be a thing one day!! Continued love and prayers
Emily x

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Mandie

Simply incredible Beth. You are flipping super human and once again you leave me aghast and astounded by your bravery and wonderful black humour. Big hugs my darling girl. Xx

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Michele

So glad to hear that you are so positive.
You are ABS olutely (sorry couldn’t resist) !
Fantastic! It’s great to see you have been walking and Scout looks soooo scrummy.
Thanks for posting , been looking out to see how you are doing xx

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Sue Cunningham

Oh Beth, so good to hear that the op was in most parts such a success. We’ve been holding our breath with fingers crossed to hear some good news at last. You’ve certainly been through hell, but hopefully the future will be full of good things! You deserve some sunshine 😁 much love 💕 looking forward to seeing you soon. Xxx

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Sophi

Ohh Beth,I am so glad you are recovering so well. It so good to see you smiling, get well soon princess

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Marie

Beth, we are sending you our very best wishes for a full recovery from this surgery with no further complications. We are so glad that you can still find a sense of humour despite all you have been through. Amazing that you have been up on your feet already. It is true that a little bit of fresh air helps. All the best, Marie and Ziggy xx

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Rhyetta Musser

You have been through a TON of crap and you are keeping your positive attitude like a champ! It is amazing what doctors and hospitals can do! I love your dont-take-any-crap attitude. It’s awesome!! Much love from Missouri!

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Judith

Another brilliant piece Beth. Sending best wishes for your recovery. You are tough cookie and I am in awe of your sense of humour through all this. Go girl!

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Tracey

Hey Beth – so glad to hear you are up and on the recovery post op, we’ve been thinking about you, a lot, hoping all would go well for you. You are a remarkable young lady, amazing in every way and your blogs are just awesome! Take good care and we hope you get home very soon. Tracey, Joan, Josh & Jade xxxx

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Jayne

What a lovely picture of you and you look so beautiful. Keep smiling and writing your brilliant blogs as you are such a skillful writer. Lots of love Beth xxxx

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Rachel Johnson

Omg Beth u are one ballsy young lady,even after all the s..t u have been through, your blog is so wonderful, u are looking well eating your donuts!amazing inspiring Beth continue on your road to recovery 💖keep kicking it’s arse xx

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Bernadette Redmond

Hi Beth, we hope you are recovering well, fair play to you for that wonderful sense of humour, your a brilliant lady. Enjoy your new bed and big cuddles with Scout when you get home. We are dog mad people and totally in love with our new baby Maurice (9 months now) who we adopted in May. We took him to France and Spain with us and he was brilliant in the caravan. He has transformed our lives as we were very sad when our last dog Lucy died in February aged 13 so Maurice has worked wonders for us. Beth I still light the candle every week at Mass for you and know all prayers will be answered and you will soon be home and feeling well again. Love Terry/Bernie/Maurice XXX

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