Thursday, 24 July 2008

Don't worry baby

I fought the urge to use the obvious title to this post... School is, indeed, out though. And what a long, dragging summer term that turned out to be. It felt like it would never end, and I worked right up to the final day (no cop-out videos in my classroom). But, I know better than to moan about my job as I settle into a 6 week holiday. Needless to say as term petered out laziness ensued and a week has appeared between posts.

The school holidays are always an ironic time for the health conscious. I have had enough experience myself, and as many conversations with colleagues, to concur with the idea that no sooner than the holidays start and you're ill. For most people this involves succumbing to the inevitable cold, and is grounded in the theory that during term time we are somehow running on adrenalin, which in turn fights a 24/7 battle against the army of germs that brew up in the hot overpopulated environment of the classroom. On any given winters day, when I have 32 little monsters sat in my room and the school heating is on full blast (there are 2 settings: ON or OFF) the atmosphere is positively tropical. I'm surprised (with my record for illness) I haven't had malaria yet.

On the penultimate day of school I bumped into the Head in the corridor. We did the obligatory "how are you?" conversation (I am still not at ease with her viewpoint on my UC) and then she said "well now term's over, you'll be able to get a break from the stress". And so she raised an interesting point.

Stress, without doubt, has a massive role in the life of the UC sufferer. My first hospitalisation with a flare-up was preceeded by trying to get 60 wonderfully motivated students (!) to complete their coursework on time and to the best of their ability. I can't say for sure that this was the crucial factor, but it definately didn't help matters. In fact in the early years of my teaching life I worked in a very difficult school for 3 years (failed ofsted, special measures, kids from a socio-economically deprived area), and every day was commenced with a 3 floor sprint from my classroom to the staff toilet - at the time I had never heard of UC, but in retrospect I think this may have been a sign of things to come (in sooo many ways...). Since those dark days, and as I have become much more informed and wise about my own condition I have actively sought to reduce stress in my life. Teaching is stressful. So I am a classroom teacher (in a much easier school). No more, no less. The remuneration for taking further resposibilities is not adequately reflective of the extra stress that would be taken on. I see my boss every day, and he constantly walks the precipice between sanity and breakdown. My job is stressful - but so is everybody else's. And to return to the Heads point - is it actually possible to avoid stress even when you are not at work? Some examples:
  • I have been helping some good friends sort out their house before moving to another part of the country. Every inch of this process has caused them stress: sorting through years of accumulated things (what to keep? What to let go?); renting out your home; finding a new suitable home; decorating; actually physically moving...
  • One of my best friends has been trying to fan the embers of his relationship, which has become long distance, meaning weekends of travelling or constant phonecalls...
  • My other best friend is in Jordan with work while his pregnant girlfriend is at home in the UK...
  • My neighbours have just had a premature baby...
  • 6 week summer holiday, 2 kids to entertain!
  • Years ago, before I was a teacher, we never had enough money for anything - but were determined not to go into debt, so each and every day was about scraping by. And now there are thousands of people in that situation...

These are just things off the top of my head. There are too numerous a number of things that make life stressful. And each person has a different factor that causes them more stress. I have ALWAYS had the physiology that means that stress manifests itself straight in my digestive system. Oh yes, I can remember many a pre-job interview rush for the toilet...

So, what's the answer? Well, I can only say that, for me, talking is the key. As hard as it has been sometimes to admit I'm suffering from stress, getting yourself to tell somebody else is vital to dealing with it yourself. Most stressful situations can't be avoided, I find you have to take them on with honesty to yourself and others.

Here's a final thought: If I feel that the UC is starting to flare-up I start to worry about it... anxiety goes straight to my guts... stress is a recognised trigger for UC... so I worry that the UC is flaring and I worry because I'm worried about it... Now, that is stress that's hard to manage.

Wednesday, 16 July 2008

Suicide is painless

When the UC reared its ugly again earlier this year it was the worst it had been for about 3ish years. As this flare-up came on the back of a week in hospital (see here) I decided that I had seen enough of that place for a while - acually the exact moment at which I decided I had seen enough of my delightful local hospital dovetailed neatly with the moment I decided that there was indeed a strong chance I was not going to make it to the next day: feebly laying awake, barely able to move, in the middle of the night, while an extremely surly Balkan 'nurse' made up for the lack of a drip stand by tying my anti-biotic IV drip to the lamp above my bed. I started having hallucinations about being in a combat field hospital... altogether now:

Through early morning fog I see
visions of the things to be
the pains that are withheld for me
I realize and I can see...
that suicide is painless
It brings on many changes
and I can take or leave it if I plea
Where was Radar when I needed him?

Thus when the cramps and poo and blood started again, I decided that I needed to get more proactive and face up to the truth. Initially this lead to my joining the NACC. Now, I had been blithely saying "Oh yeah, definately" to my GP and IBD Nurse every time I saw either of them and they recommended I take this course of action (which they did EVERY time I saw them). So this time I came good on my word and joined. And made a little donation too, which was nice. Joining the NACC was a good move for me - I've read a great deal of interesting research papers for one thing, and been able to get fully knowledged up on the azathioprine in readiness for crossing that bridge. However, it would seem that those fellows at the NACC passed on my name to my local IBD 'group'. I have absolutely no wish to speak negatively about this or any other group. I am utterly convinced they provide wonderful support for all their members and they have my utmost respect. But I wasn't, and remain, unready to join such a group. The idea of meeting up in cafes in town on a regular basis and sharing experiences is not a place I'm at yet. I can't quite even bring myself to open the newsletter they send me every month.

Despite all that (and I know these are issues of my own, rather than others) I did feel the need to exorcise myself of some of the UC demon. And so I came to blogging, and blogging is fantastic. I have discovered many other UC blogs out there (yes, I need to update my blogroll), each and every one brings new perspectives and, possibly more importantly, recognisable situations: EMPATHY. Not only those, but I have taken great heart from those people who have kindly left comments here at the Mercy Seat. Which brings me to my point (finally!)...

Whilst sifting through the assorted information we keep on the kids at school (special needs, medical info etc) earlier this year, I discovered that a boy I teach has UC. He is a frail looking, pasty and rather quiet chap in year 9. He has that pensive look about him that I often feel is fixed on my face. He has a troubled brow and his shoulders seem to bear a weight. I would guess that his UC is active, there have certainly been periods of absence this year. And yet I have not said anything to him. I cannot decide whether it would be the right thing to do. On the one hand I think I might be able to give him something that the blog has given me. On the other hand, I might come across as an interfering bastard. So, what should I do...?

While you decide, I'm going to have a late-evening medicinal cigarette in the garden.

Sunday, 13 July 2008

The Wind cries Mary

Fart, trump, toot, cut-the-mustard, float the air-biscuit, guff, trouser-cough, a real bronx cheer (come on, didn't you have a whoopee cushion?)... whatever you call 'em, those windy-pops have been my tormentor for the last 5 years.

I grewup in a household where a mans windy emissions were his pride and joy. It was expected for them to be delivered with a triumphant fist clenched and a cheek proudly raised. But UC ended this. I will never forget that instant of crest-fallen realistation when an apparent moment of exaltation in front of my awe-struck audience (the kids) ended in a wide-legged dash to the loo. And since then each new fart is greeted as a potential imposter. Yes, I've been caught out but I've also developed one helluva sphincter...

Its sure had a work out this week. After the initial (clearly metally induced) bowel wobble I've settled into this probiotic diet. Just one a day, as they say in the ads. The main thing I've noticed is an increase in bloaty-ness. Which is weird because I'm sure those ads say that the friendly bacteria get rid of that. Maybe thats only the ladies - why are women the main targets for bifidus digestivum et al? Or, maybe, God forbid they're... lying! Anyway, bloaty-ness always sets me on fart-edge, so I've been walking round with a fully clenched sphincer all week. On the whole though, I've beem feeling pretty good (prednisolone effects aside). So much so I lulled myself into a false sense of security and risked a Thai green curry last night. Whoops. Hello toilet, my old friend...

Tuesday, 8 July 2008

No milk today

Today I embarked on my rheumatologist instigated course of Probiotic yoghurts. The first hurdle was to decide which to buy. Do I go for Bifidus Digestivum? Bifidus acti-regularis? L. Casei Imunitass? Lactilus colonactiviatius? OK, I made that last one up. But, you can't help reading these bloody things and thinking they're all made up. They read like the results of a competition at the marketing departments christmas piss-up. Indeed there is a link to an article on lovely old wikipedia deconstructing each of these cod-latin terms here. Not a good place to start though, so if you're thinking of trying them, don't read that.

In the end I plumped for Actimel. Ths is made by Danone (who get a right spanking in the article linked above!). This was the brand suggested by the professor when asked... but I got the distinct impression he named the first one he thought of. He wasn't amused by my query about whether they sponsored him anyway. The final decision making factor was that they contain L. Casei Imunitass, which in my opinion sounds the most likely of those terms.

So, what the hell is it? Well, thats summed up nicely in another wikipedia article here. Its all based on a 'friendly' bacteria called Lactobacillus casei. This exists naturally in the gut and mouth, and when taken as a supplement can lead to the increase in intestinal microflora which on the whole is consider helpful in balancing the responses of the immune system in the bowel. Very nice too.

But does it really work? Well, I've had a little explore on the 'net (thanks google) and most of the research papers I've found (that I could understand) suggest that... no-one really knows! But the finest minds of medical science seem happy to agree that it sort-of-seems-too. Here's some of what I discovered:
  • p414 of this journal '2nd Probiotics, Prebiotics and NewFoods' has a summary paper about the responses of mice with colitis (!!!) to probiotics. Essentially they decided that the probiotics definately had some effect on the intestinal inflammation of the mouseys, but they're not sure exactly what. I have to say there is a definate trend in trying this stuff out on mice. In this particular one they removed the whole intesinal tract of the mice and transported it in dry-ice to the place where they did the testing. But I still can't over the fact they found some mice with colitis.
  • Daisy Jonkers, PhD and Reinhold Stockbrügger, MD, have written paper helpfully entitled 'Probiotics and inflammatory bowel disease'. Daisy and Rheinhold do go on rather a great deal about mucus but in the end reach the conclusion that "Studies on probiotics in animal models of colitis are promising" and "If probiotics do prove to have beneficial effects in IBD, investigation of the mechanisms may well lead to further advances in treatments". So, thats good. I think.
  • Delphine M.A. Saulnier goes one step further by examining the role of 'Synbiotics', although I can't help feeling were moving into the realm of Marvel comics here (Venom anyone?). Unfortunately I was not allowed access to the lovely delphines article, but her conclusions were as follows: "Recent human studies indicate that ingestion of synbiotics modulates the gut microbiota, promoting a healthier composition; it appears that synbiotics can be more efficient than either pro- or prebiotics alone in inducing this effect. Preliminary results have shown beneficial effects on biomarkers of diseases such as ulcerative colitis (UC) and colorectal cancers." So, that also sounds good, though it seems probiotics might work better in conjunction with prebiotics... whatever they are. And whereever you get them.
  • And then, blow me, but I only went and found a video that sums it all up rather nicely here. I only watched up to the part where they start talking surgery, because I'm a wimp. But watch and learn people, watch and learn. (Although, I'm sure the old guy talks about 'good' bacteria like "e-coli" - huh? Doesn't that stuff kill people?)

In the end of course the only true measure of how useful these yoghurts are is my bum. And wouldn't you know it, today has been the worst its been for about 2 weeks. Still, I'm gonna stick it out a bit longer - I'll keep you posted.

Monday, 7 July 2008

Drug store woman

I think I committed a crime today. And struck a small blow against 'The Man'. The system that stops me being able to be fully in control of my illness. I was driven to it though, m'lud. By a particularly unpleasant pharmacist and the kafkaesque nature of the NHS. And 'roid rage.

I took my prednisolone script to the chemist after school. I went to the Boots on my local high street, because I like the pharmacist in there. She once helped me out in the grips of agonising stomach cramps. I reckoned on her help because I had a problem. The old professor of rheumotology had written me a prescription for 150 preds, but he'd only gone and prescribed preds with enteric coating. Now call me deluded if you want, but 'enteric coating' sits in my file marked: NO! I can't remember why, and I realise this just adds to the irrationality, but at some point in the past I had to take preds with enteric coating and they didn't work as well. So, like admiting I'm feeling well and not saluting magpies, they have become anathema to me. Therefore I needed to explain this to my kindly pharmacist and with her help get the right pills that help me mentally too (never ignore the placebo factor). Unfortunately it was a new/different woman. So, I carefully, quietly and patiently explained the situation to her...

"Huh. You're the second one of these we've had today."
"Oh, sorry"
"Well, I can't change it. I can only dispense whats on the script."
"Yeah, but I NEED the non-enteric coated ones... they work better for me"
"Your doctor obviously doesn't think so"
"Yes, he doesn't normally prescribe them for me, I usually get them from my GP"
"You'll have to phone the hospital and get them to fax you a new one"
"But I've run out - I need them today. Can't you just give me the non-enteric coated ones please... please?"
"No. I can't give you a different drug to the one your doctor prescribed for you"
"But its not different - its prednisolone"
"No its not"
"It is! Its just got a coating on it"
"That makes it different - do you expect me to let everyone decide to take home different drugs to the ones their doctor prescribes?
"You'll have to go to your GP"
"But getting an appointment there takes days, sometimes weeks - I don't have it on a repeat prescription"
"Well. You can have enteric coated prednisolone. But I'm not giving you a different drug"

At this point I felt I could no longer hold back the 'roid rage. Fortunately for the pharmacist I had my youngest son with me. So I gripped the counter, counted to 10, took my script and left swallowing profanities. Now, at this point the red mist had descended and my moral compass was askew. I went back into Tesco, to the lottery stand. I used the pen on the stand to change my prescription. Not a high-class, sophisticated piece of fraud, just the simple scribbling out of the words 'enteric coating'. And then the boy and I walked up the road to the other chemist (the one where they dish out the methadone doses: I thought they'd be less perturbed by a shifty looking character...) where they cashed it in without so much as a by-your-leave. So, mwahahahahaha one-nil to me!

Just a final thought: possibly the best UC blog I have read - Number Two's - has come to an end. Reading Number two's gave me the confidence and impetus to start this blog, which in turn has helped me cope with the UC. I am glad that Martin is feeling well and hope that he stays that way. I look forward to seeing the return of such a witty and perceptive writer in a new form soon. Good luck Martin!

Saturday, 5 July 2008

Please please please let me get what I want.

"If music be the food of love, play on..." so spoke Orsino in Twelfth Night. Although he does go on to beg for an excess in the hope that too much will cure him of his need - a metaphor for his unrequited love I believe (but don't quote me, I'm not an English teacher). Without wishing to labour this particular point, it's the first bit of the quote that is relevant to me. Music has been a pillar in my life since my teens. It has been the post upon which I have hang important moments in my life; it has provided the soundtrack to the emotion of my life. We all have a soundtrack to our lives, external, internal and always changing.

That said, for as long as I remember I have had songs that live in my head. Some of these are permanent residents. Burnt into the electronic circuits of my brain. They are ridiculous: the theme tune to the 'Sullivans' for instance (a terrible 80's australian daytime soap). They are great: Danny boy (I love that song). These songs seep into to my consciousness and I find myself whistling them absent-mindedly. They are just there.

But, some are temporary visitors. They dominate my brain for a few days and then disappear back into the record cabinet of my mind. It is these that I often reflect perhaps best represent my inner thoughts. And so it was recently that I found my self repeatedly singing 'Please please please let me get what I want' by the Smiths. I have always been a sucker for a bit of melancholy and I know I can be prone to self-pity, but the sentiment of this song seems to fit an occasional UC state of mind I can get into. Sometimes this damn illness drags on and on. It drains you as you go. And sometimes, when I reach that low point, I do cast a despearte gaze around and bitterly think "Why is this happening to me? Why isn't it happening to that guy, or that guy? Why can't I just be 'normal' and not have to spend every waking hour wondering whats happening in my bowel? See, the life I've had could make a good man bad...". Of course, in clearer moments I can be wonderfully objective, count all my blessings, be humbled by inspirational people who face far greater troubles than mine with dignity and gravitas, and keep everything in proper perspective. But the other day I was down low, it was just me and the Smiths... Still, I always know when I'm really on a bummer, cos then I start listening to 'Exit music (for a film)' by Radiohead...

Don't worry though, because yesterday was a Kings of Leon day - until it got stuck in the CD player in the car and brought on the 'roid rage.

Tuesday, 1 July 2008

I know there's an answer

I went to the Professor armed with questions. Here's what happened:

Firstly I had to have a pretend session with a medical student. I used to hate this - repeating the whole story from the start, watching them hopelessly try to keep up with all the queer anomalies and my own theories on whats happened. Now I feel like I provide a service for the future. The more young doctors that understand the individual nature of UC and all its associated symptoms, the less likely people are to come up against an inflexible old school consultant like my Gastro-doc. I've taken to writing my own 'notes' and this time I also took along photos of my inflammed feet (see 12th June). So I positively bombarded her with information. Eventually she gave up trying to make head or tail of me and went and got the prof.

As usual with Professor Rheumotology, I had a constructive and fulfilling appointment. We made these decisions:

1. My bloods are OK right now. This I managed to ascertain myself because the med student dropped the results from last week and I had a look at the old nitropyhlls and lymphocytes (I can't necessarily spell those though). Both within the 'normal' range. I also was able to assume an air of self-satisfied smugness by answering the profs question to his students (3 in the room with us!) about the purpose of TPMT's - an enzyme count to indicate sensitivity to immunosuppressant. Haha. Well done me.

2. Thus, with bloods OK, the prof suggested there is no need to rush into azathioprine yet. But he did give me another leaflet about it - I'll file that with all the others. He also suggested that azathioprine needn't be the inflexible 5-year course that is oft claimed on the 'net. Rather that it may be carefully monitored and used much more intermittently, when necessary, essentially to reduce reliance on steroids. So, there's a point to raise with old gastro-doc.

3. Seeing as they seem to be working well at the moment, I'll be staying on the prednisolone for a while longer. I did however learn something new here: as we all know steroids have to be tapered down to nothing (if you're lucky enoughto get that far). So, I usually taper by tablet, i.e. 20mgs one week, 15 the next, 10 the next and so on. What this rather dimmly ignores though is that by doing this you reduce your dose by 25%, then 33%, then 50% - in other words far too quickly. No doctor has ever pointed this out to me before. So, my new regime goes: 10mgs a day for another 4 weeks, then alternately 10 one day, 5 the next, then 10, then 5, for 6 weeks (therefore 7.5mgs on average), then down to 5 until I run out. Theoretically within this time I will have had the phantom appointment from Gastroenterology to further discuss azathioprine. The draw back here is the crappy pred side-effects. Unfortunately for a man weighed down by the evil sin of vanity my main side-effect are spots. And they are back in force. Oh, and shouting at people, but I dont mind that so much.

4. He also pretty much insisted that I start drinking probiotic yogurts on a daily basis. Surely 'bifidus digestivum' can't really be real can it? Oh well, I'll give it a go. And his nurse suggested to me I try Acidophollus tablets. Mind you, she whispered this to me as she escorted me out... maybe she shouldn't be trusted... "they keep them in the fridge cabinet of Holland and Barrett".