That’s Pants!!

What do you think of when I say the word ‘pants’?

If you’re Canadian, you probably think of this -

If you’re British, you probably think of this -
Or you think of ‘pants’ as a negative exclamation, ie: “That’s pants, that is.”, or “What utter pants!”

But if you are British, have Crohn’s Disease and are on a biologic drug such as Adalimumab (Humira) or Infliximab (Remicade), you are probably enrolled on the “PANTS” study.

I can never decide if that name is just an IBD joke, or if someone quite seriously named it that, only to have all of the patients and hospital staff involved with it across the UK giggling childishly every time we mention it. Either way, it stands for "Personalised Anti-TNF Study". How they got PANTS out of that, I have no idea.

As I’ve stated in several previous posts, biologic drugs are still new-ish, and there are a lot of things that doctors don’t really understand about them. Humira and Remicade are a type of biologic drug known as an “anti-TNF” therapy. TNF (Tumour Necrosis Factor), or more specially, TNFa (a for alpha), is a component of the immune system implicated in auto-immune disorders like Crohn’s Disease and Rheumatoid Arthritis. And like everything in the immune system, there is more that we don’t know that what we do know.

What we do know about anti-TNF therapy is that when it works for a patient, it works really well. It gets the inflammation down, lets the inflamed area heal (guts in the case of IBD, joints in the case of RA) and seriously reduces the need for surgery and steroid treatments.

What we also know about it is that it is bloody expensive. I currently have £2000 of medication in my fridge if that gives you any indication as to what we are talking about.

What we also know is that, like all medications, they can have serious side-effects.

And what we also know is that it works really well in about 70% of patients. And it doesn’t work at all in 30%. And no one really understands why.

Hence the study. What they are trying to understand is what is it about the 70% and what is it about the 30%. And they are also trying to see if there is a way to “personalise” the treatment to be sure that it will work and will continue to work. It builds on a lot of previous work on genetics in IBD and they are trying to figure if there are particular genetic factors or biomarkers that make it work or not work. Needless to say, with my family history of IBD (father, paternal aunt, paternal cousin, and we suspect my paternal grandfather and great-grandfather), the hospital were very anxious to get me on board with it.

I don’t have to much to be in the study. Every three months or so when I am at the clinic, I add the research nurse to the list of professionals I see. The research nurse is lovely, but, um, well this probably sums her up best -

She always forgets something. She gets me to fill out a survey, weighs me (again!!!), gets one of the consultants to poke my tummy, adds another four vials to my blood work regime and packs me off with equipment for a, ahem, sample, which I have to post off to the research sponsors in Exeter.

Yes, I said post. As in, by Royal Mail. I feel so sorry for the postal workers (rest assured, it’s send sealed inside several different containers and bags, rather like a Russian doll). But that’s all I have to do. That’s my big contribution to science.

If you want to read more about the PANTS (snigger) study, you can read more here - https://pantsdb.co.uk/about 

Blood and Politics

In my 10 ½ month “relationship” with the IBD clinic, I have had so much blood sucked drawn that I’ve gotten to know most of the regular phlebotomists. I know which ones are less likely to bruise and generally have a nice manner. I’m particularly fond on one fellow who has a very gentle and calming nature about him while also being quick and speedy at getting the needle in and the blood out with minimal discomfort.  Today, I wasn’t lucky enough to have him. Today, I had “The Temp”.

I was at the clinic for my once every three months appointment with the research nurse. I will do another post about the research study I’m enrolled on, but generally my involvement involves nothing more than having a bunch of additional blood work done and filling out some surveys. So after my brief appointment with the nurse, off to the blood lab I go, vials and paperwork in hand.

Today is also “the morning after the night before” of the Scottish Independence Referendum, so needless to that was a topic of discussion for most people.

“The Temp” who does my blood sucking work starts the conversation about the referendum result and quickly wanders into a big complaint about Prime Minister David Cameron and his policies. Now I won’t disagree about that, believe me, in my line of work, I have more than enough to say professionally about his coalition-of-convenience government, never mind what I have to say about him personally. She complains about the changes to Old Age Pension and the impending removal of the fuel subsidies for seniors and the end of free bus passes for over 60s. I completely agree. But then the conversation went like this:

The Temp: “I mean, I’m an OAP and I’m still working 16 hours a week, and all these immigrants . . . “
Me (interrupting): “Um, I’m an immigrant.”
The Temp: “ . . .All these immigrants come in here collecting all of these benefits leaving nothing for us . ..”
Me (interrupting): “I'm an immigrant.”
The Temp: “Well, no, you’re . ..”
Me (interrupting again): “Yes I am. Can’t you tell by the accent?”
The Temp: “Well, that’s different with you, I mean... um... you’re working . ..” (The only reason she knows this is because I’m wearing my work ID badge)
Me: “No, it’s not, I’m an immigrant. And you have no idea what immigrants have to go through to get into this country or that we are usually not entitled to benefits.”
The Temp: “Well, no, I mean, I don’t mean that. I mean, I’m not racist or anything, but . . .”
Me: “I’m sorry, but anyone who says those exact words has just proved themselves otherwise”

I have lost count of the number of times in my almost 8 years of living in the UK that I have had conversations with (almost always White) Brits that go like that. More than once I have had to call out people’s racist bullshit by pointing out that they are only saying those things to me because I happen to be White like them. And it truly and utterly pisses me off.

I have no patience for racism at the best of times, and I have even less for people who clearly hold racist views and then try to excuse themselves by saying “I’m not racist, but ...”.

However, I seriously have no patience for this from someone from within the NHS. There is absolutely no excuse for this in a publicly funded hospital that serves one of the most multicultural cities in the country. And seriously, has she not taken a look around at her colleagues? AT LEAST HALF THE STAFF IN THAT HOSPITAL ARE IMMIGRANTS, INCLUDING MOST OF THE DOCTORS!!!

Bloody hell woman, you are in the wrong job if you hold views like that. And I would also say that you are in the wrong job for doing this to my arm this morning.



So not only are you a racist cow, you’re also pretty shit at taking blood. Cheers for that.

And as much as I want you take those racist views and shove them somewhere unpleasant, I think the more fitting IBD thing to say would be that I want you to take those racist views and drink them down in a big glass of Moviprep. Hopefully the literal shit storm that will create will teach you to keep your racist views to yourself.

Asking Too Much

I’m kind of losing it. I am yet again facing another night of no sleep thanks to dreadful insomnia. Again. And no sleep does not help my already poor mental health.

I’ve never been a good sleeper. Neither is my mother, so I come by this naturally. But as anyone with chronic illness will tell you, sleep is an integral part of keeping well. Unfortunately, despite my best attempts, I am just not that lucky.

The problem is multi-fold. I struggle with getting to sleep, staying asleep and waking up too early. Often all three at once. It is made worse by perimenopausal night sweats which require multiple changes of PJs and sometimes even the sheets. Ongoing back and hip problems can make it difficult to find a comfortable position, even with a good mattress. Sometimes my body is tired, but my brain isn’t. Sometimes it’s the other way around. Sometimes my eyes are tired, but neither my brain nor my body are. Then there is the Crohnie curse of being awakened by your own stomach noises.

And everything is made much worse when the Brain Weasels and “Late Night What-Ifs” http://esl.fis.edu/learners/fis/current/english/poetry/whatif.htm come to roost.

Four months on Pred meant four months of drug induced sleep deprivation. And six months since coming off Pred, things haven’t gotten much better.

And believe me, I have tried just about everything to help me sleep. ‘Have a dark environment.’ Apparently black out blinds, no street lighting on my cul-de-sac and a sleep mask are not enough. ‘Try using white noise’. I’ve tried the following forms - fans, humidifiers, air purifiers, low-level radio static, classical music, leaving the window open for road noise - none of them work.

‘Have some hot milk’ - doesn’t work for me and I don’t like the taste. ‘Have a drink!” While too much alcohol can make me sleepy, I end up with fitful, restless sleep rather than a sleep worth having. ‘Have a relaxing bath’ - just wakes me up. ‘Do more exercise’ - wakes me up. ‘Do gentle exercise’ - as someone who has done Tai Chi for years, I can say also doesn’t help me sleep.

‘Read!’ - I do loads of reading - mindless stuff, children’s books, young adult fiction, books I can’t get into, 800 page tombs of political or social history, academic papers, case law, policy and procedures manuals, legislation - I have tried it all. Doesn’t work.

‘Take some herbal remedies’ - two points on this - a) which herbal remedy, there are thousands; and b) when you have the number of allergies I have, taking untested herbal remedies is not necessarily a good idea. ‘Ask you GP for sleeping tablets’. I know this works well for some, but they leave me zombified and still unable to sleep, and frankly, the last thing I need with the state of my mental health is a one way ticket down the road of benzo dependency.

So here I am, wide awake at 4am with 2 ½ hours to go until my alarm goes off. Again. I’m past being fed up with this shit. Is it too much to ask for a few good night’s sleep? Yes, apparently it is. As is asking life to cut me a break for a change. That, apparently, is asking far too much.