I’m still in hospital from last week, which you can catch up on here
At middle of the night obs time, I got told I wasn’t allowed any water for the special endocrine blood tests as well as having to fast. This is even more tricky for me since I have diabetes insipidus, which affects the way I process water. So I feel permanently thirsty and need the toilet every 9 seconds.
Then, on top of not being able to eat or drink, I got told that I wasn’t allowed my hydrocortisone until after the tests. Which would have been fine if they’d done the test first thing like they were supposed to, but they didn’t. I kept pushing my buzzer and saying I needed them to take my blood because I needed my HC but the healthcare kept getting stroppy with me and telling me that people were busy. When it got to 2 hours late and I was feeling seriously ill and having to fight to keep myself conscious, I eventually cracked and cried and repeated my ‘you know I can die if you give me my drugs late and it’s 2 hours late now’ line. It’s amazing (and annoying) how quickly people take you seriously when you cry. The doctor came and did it straight away then! Why did I bother being polite and calm before then? Oh wait, because I have an illness where stress and confrontation can kill me… particularly if you’re withholding my drugs!
The doctor then struggled to get blood out of me because when I do fasting tests and haven’t had my HC, my veins clamp down. Which is another reason why it’s a good idea to do my tests at the right time!
Once I’d had the blood test, I was allowed to eat, drink and felt a lot more merry once I’d had my hydrocortisone. The endo I’d argued with on Friday came to see me briefly while I was eating my breakfast and said how he was ‘glad he’d revised his plan considering I’d felt ill over the weekend’. Which isn’t strictly true. More his plan wasn’t a great one in the first place and mine made more sense. But he said he was happy for me to be discharged from an endo point of view.
Then the gastro reg came to see me. She knew about AI, but kept focusing on the fact that my record says I have it from taking steroids for my asthma rather than it saying ‘secondary adrenal insufficiency’. Which isn’t that big a problem except for the fact that you can interpret it, like she had, to mean that there may be a chance of recovering some adrenal function. But there isn’t in my case. So it took a while to clear that up because not taking steroids isn’t an option. She said she doubted that I had a gastro problem like colitis because all my tests had come back fine and the ones that hadn’t she was fairly sure wouldn’t show anything. But she wanted a full colonoscopy as an outpatient just to make sure. I explained that I need to be admitted to hospital overnight to do the bowel prep because of having AI and the risks having diarrhoea brings and she said she’d sort it. She was also happy for me to be discharged.
So everyone had signed off on me and I was allowed to go home! Except things work slowly for discharge so I knew I’d probably be there until at least tea time even though it wasn’t even lunchtime yet. The doctor has to do his discharge summary and get that approved. Then the pharmacy has to sort your prescriptions and they have to come back. The more you have, the longer it takes. The nursing staff have to do their paperwork and need to take any cannula out and then finally you’re allowed to leave.
Except my nurse came back and said I needed to provide (what a word) one more stool sample before leaving and I couldn’t leave until I had. Seriously? I’d literally spent an entire week trying to stop needing the toilet every hour and now that I’d finally stopped I was being pressured into pooing for a sample?! Fortunately for me, having a shower always gives me an upset stomach because of the energy involved, even if I sit down. So I had a shower and lo and behold…!
They were serving dinner as I left. It was a bit odd putting shoes on for the first time in a week!
My phone rang with ‘no caller ID’, which I don’t tend to answer, but hospitals often ring you like that, so I kind of had to. It turned out to be the endoscopy department ringing to schedule the colonoscopy for the next week, which I thought was pretty speedy. Originally she said it would be Monday, but then I asked her if she knew I had to be admitted overnight and she said she didn’t. She said she’d ring back and when she did she said it had been scheduled for the Thursday and I had to report to the endocrine ward the day before at 10am to do the prep. I asked if I’d get a letter or anything and she said the endo ward should contact me but if they didn’t just turn up.
I got an appointment letter through for my next endo appointment but it was with a different doctor (who I’ve had before) in the chronic fatigue clinic. What I guessed had happened is that they were struggling to find me an appointment within the normal clinic so had put me in a different clinic but still seeing an endo. But I thought I’d better ring next week and double check anyway.
I definitely hadn’t heard from the endo department so googled ‘colonoscopy bowel prep’ and found a patient leaflet online from another hospital which told me I had to stop taking some medications and eat a low fibre diet in the days leading up to my colonoscopy. I wasn’t entirely sure if the guidelines were the same everywhere but some kind of patient leaflet is better than none!