5.45am – dem dry bones
With all of these hospital treatments and effervescent tablets churning up my insides like a cement mixer, it’s really hard to get a decent night’s sleep. I woke at midnight, 2am, 4am and then dozed until now.
Alongside the frequent trips to the bathroom, I have been getting joint ache in my knees and ankles; alongside some less-than-welcome period pain. I am somewhat relieved that the the rheumatologist who examined me yesterday said she wasn’t worried about bone inflammation. She even referred me for physio to keep things mobile while I try to get into remission.
T and Jules thought it was hilarious when they saw me hobbling around like a grandma today. They even gave my mobilisation exercises a soundtrack of slow jamz music. I think that the funniest thing is how chub-chub I’ve got thanks to the steroids.
I’ve not had a dose of steroids now for about 16 hours and I am yet to see any of the swelling go down. My joints actually feel worse today than they did yesterday. So I am going to try and get about and move more today. I know that I should go for a walk around the hospital but I really don’t want to face up to the reality of the other sick people around me – it reminds me too much of my own mortality. I’d rather just isolate myself in quiet hermitude in my room.
So I decide to do my best to potter around here today (‘here’ being this 3x3metre room) and do my mobilisation exercises without fear of ridicule from others! Part of me thinks Jules has already recorded last night’s performance and when I’m out of here I’ll find it’s gone viral in Japan or something. No, she wouldn’t… would she? I’ll kill her! (With words).
Today I’m due to see the Scandi doctor in his ward rounds today. Not a lot has changed since yesterday but I think I need to check with him a few things:
- Do I continue with the Asacol enema? (Please god, no).
- The glycerin enema hurts like hell when I use the toilet afterwards. WTF?
- Is it still necessary to have the blood-thinner injections?
- Oral Asacol: do I still need this too?
- Has the tuberculosis test been done on my bloods and am I all clear to start Infliximab?
- Can he give me a doctor’s note for work? What would my disability status be under the Equality Act. Would the school have to make reasonable adjustments?
Encouragingly, there was a lower volume of blood in my poo yesterday. However, I think I should also ask the doctor why would we bother to continue with the non-infliximab route if I am taking all these stool softeners, yet I’m still bleeding? I mean, is there any kind of bleeding that they would consider an acceptable amount before they agree to fund expensive biologic treatment? This is important to me because whatever is happening at the moment doesn’t feel like getting me into remission; just ‘managing’ my flare-up. I’m concerned that my symptoms will get worse again, so what is the long-term plan?
Behold! Another flow-chart (this is my understanding of my current treatment plan):
11.50pm – not your typical case
Just saw the Scandi doctor on his ward round. He complimented me on my flowchart, obviously.
I have had to Google the word ‘epiphenomenon‘: the word which he banded around quite frequently during our discussion. Wikipedia says this:
In medicine, an epiphenomenon is a secondary symptom seemingly unrelated to the ongoing disease or disorder.
In my case, he is referring to the bleeding. He says that I have not got a typical case of ulcerative colitis; in that there isn’t deep ulceration of tissue and that the mucous lining is quite consistent (albeit very bloody). The trouble is that they don’t know whether the bleeding is a primary or secondary result of the disease, so treating it is going to be a case of ruling things out one-by-one.
There’s not a lot left to do now other than sit tight and ride out a weekend of bowel movements in the comfort of my private room. Here’s hoping that there’s a significant improvement…