Hellooo, how’s everyone doing? Firstly, my apologies for disappearing off the face of the earth suddenly for a while there. I tried to post the odd updates on Facebook and Instagram, but for those who don’t follow on those, I basically had a few problems. Thought it was the usual stoma shenanigans, but ended up in A&E and having emergency surgery. Got home yesterday and I’m utterly exhausted. Week from hell sums it up fairly well. It may sound completely melodramatic, but honestly, in my opinion, it has been utterly traumatic from start to finish.
Needless to say, I’ve fallen behind on absolutely everything; hundreds of emails I’m yet to open, numerous appointments I’ve had to cancel, my room looks like it’s been ransacked, washing has piled up, I’ve got oodles of hospital supplies thrown over the floor when I literally just landed back home, and I’ve been able to do nada on the blogging front.
Note – I drafted this in the middle of the night when I couldn’t sleep & my brain is mush so apologies in advance for any errors on this occasion.
I’d been feeling ‘off’ and worse than my usual baseline for about 2 weeks, and started wondering whether it was another virus of some description. I didn’t know whether or not it was related but then on Saturday night I had stoma problems again. Didn’t sleep all night and pain was getting ridiculous so I figured it was the normal thing of my insides twisting. They do like to do the Twist and the jive from time to time, even though I tell them there’s no dancing allowed in there. Sunday morning, off to A&E in agony.
My stoma had totally stopped working, I was on IV morphine and had various tests done because they said things seemed a little different this time. Worse, but they couldn’t pinpoint the exact location of the issue and they couldn’t even get the camera scope in there.
The problem with A&E is that you have ward rounds in the morning with the surgical consultants on duty, which can vary from day to day. The first day I got a good one; the next two days, I did not. The first surgeon (well known, positively regarded by others on the ward) says ‘it’s likely another twist but maybe also one higher up, and surgery would probably be needed, it was just a case of whether it would be a big open surgery, a revision of the stoma, or having to re-site it elsewhere.’
The next surgeon I saw, I didn’t trust in the slightest (nobody knew who she was either, my best guess is she wandered in off the street). Maybe it was gut instinct, or the way she was talking about things. Maybe it was how she came across to me as being too dumb to be a surgeon when she ends the consult by turning back to me and saying, ‘you have a stoma, yes?’. I voiced my concern the first day to a lovely doctor consultant chap there, though I wasn’t 100% sure of his his actual role/title. He listened, said he’d be there the next day and it would be okay.
The next day, the same dubious surgeon returns. I tried to give her a stern look, but with my morphine face (scrunched in pain, snotty and teary) I’m not sure I managed it. She couldn’t answer a single question I had. Her response to the tests was to ignore the first that showed a twist and that because she couldn’t see exactly what the other problem it meant there was probably no problem, just lie flat and go home later and see how you get on.
I was rolling around, hysterical, and losing my shit. I’d reached breaking point and it was a dark place.
But, I tried to challenge this with all I could muster. Going back through what the first surgeon had said, what’s happened before, the problems I have with a small bowel that dances the Twist, the symptoms now. She shrugged her shoulders. I said she was leaving me there to die. And she left.
A few hours later, the lovely consultant chap returns. He says don’t worry, I can see what might be going on with the test results and I know she’s completely wrong. He said he went out on a limb to contact the first surgeon, and he reappears a short while later.
If they didn’t act to operate, I would die. What the first surgeon was suggesting, that it was nothing and to do nothing, would have killed me.
Spoiler alert – This bit is rather grim so don’t read if feeling queasy or you’re if you’re eating! My small bowel had twisted, totally obstructed, part of it would be diseased now with no oxygen and would need to be removed, too. I was already throwing up (too much information to look away if you’re feeling queasy – vomit from my insides, not just my empty stomach, which is just about as disgusting as things get). I had to have an NG tube in as the vomiting wouldn’t stop. The pain was ridiculous so I was off on IV morphine almost constantly.
The surgeon came back that evening despite it being his night off to do the surgery. All seemed to go okay, done laparoscopically, and without the stoma having to be moved. The bowel had twisted twice, wrapped around itself higher up; the diseased part of bowel was removed and the stoma was refashioned.
Nightmare Hospital Stay
All I can say about the hospital experience this time really was that it was a week from hell. Nightmare nurses who I’d had countless arguments with. Nurses that simply never returned. Cannulas in collapsed veins but they don’t believe you so it seeps into the tissues in your arm and leaves you with a big lump. Asking for the nurse to temporary pause trying to shove the NG tube up my nose only for her to hold my head and continue shoving it down my throat as I choked. Not being told what was going on, not being given medications correctly when I was told I couldn’t go home because my phosphate and potassium levels were dangerously low. Ringing the buzzer for an hour before anyone turned up, even though you could hear three of them in the hall right outside eating biscuits and chatting. That’s just a small snapshot.
This is all the shit, from the nightmare nurses to idiotic doctors and surgeons, that patients simply don’t need. We have to advocate for ourselves, find someone to fight in our corner, and stand our ground, but damn, they make it hard.
A Little Light & Gratitude
I am utterly grateful for the priceless nurses who were compassionate and kind and helpful, even though they were very few and far between this time. I am truly grateful to the consultant who listened to me and went beyond the lethal female surgeon to get the help I needed. I am grateful for the dedication of the surgeon who then carefully undertook my surgery.
I won’t go into the emotional side of things here. I’ve been very up and down and around about life in general, having had a lot of time to think and honestly feeling, before the surgery, that I wouldn’t make it home. Needless to say, it may take me some time to catch up. I do feel awful I haven’t been able to read blogs or reply to comments and emails. I’ll do what I can. Please know that I care and that I hope everyone is as well as possible.
For now, I’m grateful to be home. I’ve got a wee catheter for two weeks, then eventually a surgical follow-up and no driving for quite some time (hallelujah for online shopping!) too. I’ve scrubbed my skin raw trying to get the hospital out of my pores, I’m in a whack load of pain, I’ve not slept for 48 hours straight despite minimal sleep all week, and nothing tastes right, not even a beloved cuppa tea yet.
I’m utterly, bone-achingly exhausted. It’ll be another long recovery for a totally unplanned spanner in the works, but hey, I’ll eek out a lesson or two to learn from it all I’m sure 😉