You can catch up with part 1 here
Today was the day of my scheduled outpatient colonoscopy. Except I had to be admitted for IV steroids because of my adrenal insufficiency, so I had an elective admission to the endocrine ward. I was super pleased that my night nurse (she was amazing) brought me my IV HC 5 minutes early. This never happens! I was so excited I text my husband and my friend and then showed my nurse how happy I was, which both made her happy and horrified that this is something we were all excited about!
Then it went downhill from there. It turned out that the day nurses from Wednesday had given me the bowel prep (laxatives) wrong. You’re supposed to have about a litre of water with the sachets mixed in, but they’d literally given me it in 100ml. No wonder nothing happened! Which meant that whereas this prep was supposed to clear out the last remains of my bowel, it had to basically clear out the entire lot. It would be pretty unpleasant for a healthy person, but that amount of diarrhoea that quickly is really not very good for someone with adrenal insufficiency.
Unfortunately, my amazing nurse had gone off shift and I was left with a newly qualified nurse who wasn’t very confident in his own nursing abilities anyway, but definitely not specialising in endocrinology. I told him a few times I felt I needed a stat dose of IV HC but he didn’t really get why I wanted it and kept telling me he’d spoken to his supervisor (he hadn’t) and they’d said I didn’t need it. In any case, a person with AI is supposed to have 100mg IV at onset of bowel prep, and I’d only had 50mg first thing, so I was already ‘behind’ even if I didn’t think I needed it.
In the end, I got desperate so walked into the nurse and doctor huddle and interrupted them and said I needed IV HC fast. Then the matron tried to tell me off for not asking my nurse, so I had to say that I had, many times and he wasn’t getting it and that if I was at home I’d be ringing 999 and asking for blue lights. Thankfully one of the nurses I’d had before recognised me and said ‘she’s actually an endocrine patient’ and one of the doctors stepped in, listened to what I said about my normal baseline and the colonoscopy protocol and charted what I needed. But it was pretty stressful having to do that, especially because there was about 15 people with various medical degrees looking at me.
When it got to my 11.30 dose, the nurse wasn’t keen to give it to me because I’d already had some a few hours ago. Which I appreciated completely, but I couldn’t get across to him that the stat dose was in addition to my baseline, not instead of. I got frustrated because my bay mates seemed to understand what I was saying but he didn’t!
I wasn’t expecting a doctor review because I was just waiting for my colonoscopy. But I got an endo review with a really good consultant at around 2pm. I liked him because he really knew what he was on about and had clearly read my file so knew I wasn’t a ‘normal’ AI case. I said I was worried about what would happen with my steroids because of the fact that I was due some at 15.30 anyway but also could be having my colonoscopy around then so didn’t want to be over or under replaced. He got the reg to ring the endoscopy unit and they said any time between 2-3pm, so we decided I should have the 100mg now and that should cover me.
Then it got even worse. My nurse brought me the injection promptly, but I didn’t actually get taken down for the procedure for another 3 hours. So I’d been given a massive dose of the stress hormone which my body didn’t need that second, but it geared itself up as though it did which left me a massive, hormonal, anxious mess. And the longer it took for them to come and get me, the less I’d have in my system to actually cope with the colonoscopy, which was the point of the dose.
So I had a meltdown. I hadn’t really been told what was happening, I didn’t trust anyone with my steroids because no one seemed to get it (except the good endo, who’d gone), I didn’t want a colonoscopy anyway but without any info I hadn’t even been able to mentally prepare, they’d done my bowel prep wrong so I was feeling particularly ill and I hadn’t eaten for 24 hours. And I had a lot of stress hormone flying around my system! I insisted they find the endo (I trusted him) and he came back and apologised a lot, rang the endoscopy unit and asked what was going on and managed to get some porters up pretty speedily. I told the reg I was worried I’d have to argue with the on call doctor if I needed more IV HC because they’d delayed the colonoscopy and he said he’d write me up a stat dose to ask for if I needed it. This made me feel better because I was allowed to decide myself rather than having to beg for it.
The porters kept saying ‘yeah but the doctor doesn’t know how we work, he shouldn’t have given you your meds’ when they came to get me. The impression I got was that they didn’t know about my AI and the fact that I should have been in an earlier slot, and they’d decided that as I was admitted, I could do the recovery time on the ward rather than in the unit like the outpatients, and they could finish on time.
The nurse in the endoscopy unit didn’t know about my AI either, which did not help my stress levels. I was stressing because no one was getting that I can die without steroids, half the people weren’t following any protocol and the other half didn’t even know I had AI in the first place. Then when I told the nurse I’d already had the 100mg, she assumed it was prednisone (good grief, that’s even more potent!). She was more worried about my hypos. It wasn’t until she went to check my hospital bracelet that she noticed my medical ID on the same wrist and went to check with the doctor as to whether I could have sedation or gas and air. It turned out I wasn’t allowed gas and air because of my bronchiectasis (which I forgot I had until I read it on the form as a ‘complicating factor’) and I was only allowed a bit of sedation because of my AI.
Doing a colonoscopy without sedation is not fun. Before I let the doctor near me, I made sure he knew about my AI, and told him about me being backwards in that my blood pressure goes up when I’m ill, rather than down. I was pretty forceful with this because he kept referring to my Addison’s disease, which I technically don’t have but it’s close enough. But in those cases, your pressure drops (most of the time).
Once it was over, I got taken back to the ward and was allowed to eat again! And my nice night nurse came back on shift so I told her about my horrendous day for about 45 minutes. Which might have seemed like a waste of time to other people, but I’d been really stressed all day, I was genuinely worried that I might die on a couple of occasions and it had been one massive communication nightmare from the word go. So I needed someone to listen to me, tell me it wasn’t my fault and reassure me that someone was going to look after me properly so I could go to sleep. That nurse made a huge difference even though she didn’t do much medically for me that might. I trusted her so I actually got some decent rest. She even checked my blood sugar without waking me up!
I just wanted to go home by this stage. I was back on oral meds now so there wasn’t a lot of reason for me to be there. I also had the same nurse as yesterday, but he was being very closely supervised by another nurse this time. And all my doses were given to me on time, so at least he learnt.
I was feeling gross after the colonoscopy but hadn’t been able to shower because of my IV fluids so I went to shower after they detached me. Usually when I shower, I do it in stages and don’t get dressed straight away. But I can’t spend an hour in the shower in a shared bathroom, so I did it a bit quick and got really dizzy and my BP and heart rate shot up. My bay mate got the nurse for me and I asked him to get the doctor. The endo (the one I fell out with before but I actually quite like him now) said my bp was fine until I told him about how I’m backwards, then he said I had to lie down for a bit and if I still felt weird I could have a 5mg stat dose. I was fine after lying down for an hour though.
My bed was needed so I got kicked out to sit in the day room, where lunch was in full swing. It was actually the most ridiculous system I’ve seen for catering, so I’ll write another post on that 😉
My husband came to pick me up but couldn’t find a wheelchair. In the end, he found a porter with a wheelchair who said there was a wheelchair shortage so I could only use it if he took me on it. Of all places to have a wheelchair shortage… in a hospital…! Apparently nurses hide them in wards because they’re so scarce.
I managed to make my escape though and was free!