Thursday, 16 October 2008
1st half performance in Minsk: England are malfunctioning in midfield again, the ball is passed around with some aplomb at the back and then hoofed forward at Heskey, circumnavigating midfield, in the hope that he can hold it up for Rooney to produce the preferred outcome. Meantime Walcot tears up and down the right channel with pace, but is messy in his final delivery. A brief lead is undone by more fragility in the middle as Belarus slip the ball neatly through.
Wednesday morning: following, by now, a near 48 hour gap between toilet visits, all early hubris is undone at 9am. During a, thankfully, free period I have to undertake that hilariously familar run to the toilet - hilarious because I can only imagine what it must look like to the casual observer as I run and desperately clench my buttcheeks at the same time. What better place to indulge in this weird stiff legged run than in a school, where nobody is on the lookout for reasons to undermine you... Upon reaching said toilet something approaching a heinous McDonalds thick shake is delivered in the nick of time.
2nd half in Minsk: a little Italian jiggery-pokery at half-time sees Gerrard push forward in midfield and suddenly Belarus are on the back foot. England still regularly lose possesion, but there's menace in their attacks - even Heskey is taking on and running at defenders. Rooneys game suddenly comes alive, slick passing ensues, then goals. The last 15 minutes are a cakewalk.
Thursday morning: the toilet beckons at about 10.45. But there is no urgency or cramps. Rather that, I hesitate to say this but, 'pleasant' full colon feeling that tends to preceed a proper log. What arrives is probably best described as initially log-like and then stodgy. A hugely improved outcome.
Like I said, inconsistency. Weird.
Maybe, as I sleep, Fabio comes and talks to my bottom.
Tuesday, 14 October 2008
Wednesday, 8 October 2008
Such was the start of a post I almost put up yesterday. Then I thought better of it. Too late - merely thinking it was enough. I am still wavering around the upper 5/6 area of the Bristol Chart. I haven't decided whether to change my pred dose or not yet - its a case of ensuring I've got enough to last until the next hospital appt on the 4th November. I have been having sustained thoughts of embarking on the azathioprine... but it really depends on the mood I'm in when that hospital appointment comes around.
And so to other matters. Until the recent mini-flare-up, I had begun to appreciate the restorative powers of (the once anathema) non-alcoholic beer. Yep. Thats what I said: NON-alcoholic beer. Far be it from me or my blog to become a vessel for capitalist advertising, but this is the stuff I'd been drinking:
In the formative years of my drinking life the main contributors to the world of alcohol free beer were Kalibur and Barbican... hoho, remember those: "Bar-be-can... alcohol free beer...??!" Cue californian prohibition era policemen with the feeling of redundancy dawning on their faces as in the background others smash up a speakeasy... ah, I used to love that advert. However, when it came to drinking the stuff i) never in a million drunken years would you be seen dead with one of those clutched in your lifeless hand, and ii) everybody I ever knew, including me, claimed they tasted disgusting "euuugh nuffink like 'real' beer". Even the efforts of Sean (I am an adult, honest) Bean couldn't get us to drink em.
However, needs must when the Devil lives in your bottom. And so, with weary reluctance I dutifully tried a gulp when offered by a pregnant aquaintance recently. And, blow me, if it wasn't pretty bloody good. Now I have to temper this sudden embracing of contemporary alcohol free beer with the footnote that I haven't touched a drop (your honour) for 42 months... which may mean my beer tasting buds have gone wonky, but really the stuff tasted wonderful. Just like the real thing! Lordy, a glimmer of hope! Upon closer inspection it seems that the brewers achieve that authentic beery taste by brewing it first AND THEN removing the alcohol. Marvellous.
Two points to note, however:
1) After 3 bottles, I had to try to ignore the hollow feeling that was starting to grow... Maybe one or two is enough.
2) I woke up with a bloody hangover! Can anyboy explain...?
Tuesday, 30 September 2008
Visited the GP this morn to get more drugs. I should have reduced my pred dose to 5mgs a day by now (and therefore have some left) but all is not well in the world of the bowel. Not awful (I have yet to completely refuse to fart), but not good, not right, and most importantly not solid. So, I waited for an appt with my usual GP to avoid the complex issue of persuading a less familiar doc that I am capable of deciding for myself when I need more steroids, rather than speaking to a consultant first. Fortunately the doc agreed and gave me a prescription for enough preds to last until the beginning of Nov, when I have another appt with the rheumotologist, at the current 5/10mg dose. Although after the most recent visit to the bathroom I may just have to up that to 10 mg a day. Mmmm, I'll give it a few more days.
What was new, though, was an extra concoction of drugs. My GP was concerned that I had been on the preds for a while (about 4 months, though pretty low doses), citing worry about weakening my bones, particularly as he seemed pretty intent that I was a 'fit young chap'. Does 35 still count as 'young'? So to counter this he has also prescribed me Fosamax and Adcal-D3. The adcal stuff is just a vit D supplement, so no great fears there, but the Fosamax is some sort of bone strengthening stuff (some sorta acid, I forget exactly what now), and so I read the possible side effects and 'when not to take this medicine' stuff as usual. This included instruction not to take if you have/are suffering from stomach problems including ulcers. Ulcers. Ulcers. Ul-cer-a-tive colitis... Bum. Both the doc and the chemist assured me that this was strictly related to the upper digestive system - the doc looked it up on the computer and the chemist looked it up in her little black book. But the seed is sowed...
Anyway, they didn't have in the chemist, so I 've ordered it. Excellent news, as this means I can delay any decision for at least, ooooo, a day.
Interestingly, it also instructs you to take it 30 mins before breakfast and stand upright for that period of time. But only once a week.
Monday, 29 September 2008
I would also like:
- to see the same consultant every time I go to gastroenterology
- to wait less than 4 months for my 'rushed through' appointment to discuss azathioprine (still waiting...)
- to have access to drugs and therapies that are not yet even being considered by NICE
- not to be told by a consultant that he can't help me unless I do exactly as he says even when I have serious reservations
- to be able to get a prescrition from the hospital rather than having to make appointments with my GP that are a minimum of 2 weeks away
- to not have to experience the farce that is sitting in front of my consultant while he dictates a letter to my work, which he then emails to SOUTH AFRICA to be typed up and posted back to the UK...
- to get a blood test without having to wait for over an hour clutching a Tesco-deli ticket
- to have an appointment for an x-ray/scan that does not involve a wait of hours
- better pay and conditions for my wife - a nurse (yes, we are the classic key worker family)
- and so on and so on and so on ad infinitum.
And while he's at it he can bloody well go and find a cure for UC. I am not a Conservative voter. But I am not happy with my experience of the NHS as a sufferer of chronic illness.
The NHS, in my opinion, is much like the current economic situation - a hugely important issue used as a political football. Instead of cheap, and indeed faintly ludicrous, point-scoring opportunities isn't it about time political parties worked together to reach a solution instead of vacuous polemic and rhetoric?
It's not staying on a ward with other people that bothers me, it's the inexorable demise of our health system.
Friday, 26 September 2008
- The first two weeks back: no toilets. Not ideal for a man in my condition. Actually I exaggerate here, because it was the student toilets, not staff, and it wasn't all, but about 75%. However this still begs two questions: i) surely, if you are going to refurbish the toilets in a school of 1700 students over the summer holiday, you do it before they end? ii) is there not some law about the minimum number of toilets available - some sort of child-to-toilet ratio - that forces the institution to remain closed? I tried that second one in order to secure another week or 2 off, but to no avail (I know, I know...). I shoulda got out my NACC card.
- Incidently, I have worked at this school for 7 years and this is the second time the students have had a complete toilet overhaul. The first time they even got to vote on the colour (citizenzhip at work...). This second hold-up was due to the 'vanity units' beng unsuitable. Now call me a cynical old bugger if you like, but never have they refurbished the staff loo. And there are only 3 male cubicles in the whole school - a lenghty building, at least 300m from end to end. And the one nearest me is, frankly, disgusting. Someone should be ashamed.
- Crappy timetable. No free periods on a monday or a friday - surely the days when one needs to be cut a little slack?
- Good results for my last GCSE group. I cannot take much credit - they were a great group of kids. Sadly this already means somebody is setting targets for next year based on exceeding this year - because year-on-year the government/management/public can only perceive that results must get better (as measured by grade totals). Cos there's nothing invariable about 330 new children each year, is there?
- New GCSE group contains the most arrogant girl in the world. Cheeky kids I can take. Lairy kids I can take. Mouthy, sweary, downright bad kids I can take. But, arrogant kids I just want to slap.
- A strange cyclical UC situation. I have noticed this happening before. But not while I was on the meds. I am still taking 5/10 mgs of preds alternately, which has continued to keep evertything relatively stable. But I am definately going through a sort of poo-consistancy cycle. It goes something like this: On holiday things got loose (I put it down to the tomatoes) then it all got a bit stuck (change in water thinks I), then we got home and things loosened up again (change back to the normal water, plus pre-school mild apprehension?), then it firms up again, so much so I even started to carelessly risk olives (!) spicey food (!) blue cheese (crazy fool!) and so on, but it only got more stuck (even... brown bread!!), and now its got loose again (doh!). I have not had to go to the loo more than twice a day, during loose periods, too often, so its not been horrendous, but it has lead to more of the old mental scouring of everything I have/have not eaten/drunk. And several occasions of crouching and staring intently into the bowl trying to identify morsels...
- So, I 've made an appointment at the GP's for next tuesday to get more preds, cos I don't want to stop taking them just yet and I'm running out. And I've just found a bloods envelope (that I hid from myself) that reminds me I'm supposed to get a test while I'm on the 5/10 split.
- I'm back on those blinkin' yogurts...
- Everything has been put into perspective by the birth of my best friends baby boy. Fab.
Tuesday, 9 September 2008
Monday, 1 September 2008
Tuesday, 12 August 2008
As well as all this mental and physical anquish (actually I've been pretty good mentally. I told the wife straight away how I was feeling, made the decision not to change dose pretty quickly and have stayed pretty cool. Its just the old quiet nagging voice in the back of my head...) there is a second reason. We are about to go on holiday. To Italy. By car. Now driving to Italy (over 3 days I hasten to add) probably has its challenges at the best of times. But driving to Italy with the perpetual fear of where the next toilet might be is too much for me to cope with. Especially with 2 kids in the back. So, for the sake of as enjoyable a holiday as possible I opted to stay on the steroids for a little bit longer. I'll have to change the dose when I get back because I've only got enough tablets for about another month anyway and my GP is never all that keen to give me any more without speaking to the hospital (who, incidentally, I STILL have not heard from, despite them telling me in May that they were 'pushing through' an appt to dicuss azathioprine). I just hope that the driving antics of our european neighbours and my 'roid-rage' do not prove to be too volatile a mix.
I intend to try and post whilst away if I find anywhere (internet cafe etc).
Monday, 4 August 2008
Sunday, 3 August 2008
The return of the Bristol Stool Chart. It has been 4 weeks since I had my last appointment at the hospital (in rheumatology). An ideal time to consider the current sate of affairs.
1. Prednisolone. I am taking 10mgs every day for the final time today From tomorrow, as discussed with the consultant, I am changing to an alternating 10 - 5 mg dose. This is good because I am sick to death of the shakes and the spots. This is not good because, as usual, up to this point everything has been hunky dory... but now...
2. Poop. 4 weeks ago things were somewhere around Type 1 or 2 (like nuts!). Then I started the probiotics, wherein they went to, ooooh lets call it a 4.5 (for artistic merit). This I took to be my bodies usual mentally stimulated resonse to change (I think my physiology is the perfect representation of a blue-rinse tory: doesn't like change and doesn't like foreigners). Things stabilised and I've had a good two and half weeks of 3/4's. Lovely. But, this also lulled me into a false sense of security - oh, how easily I'm swayed by olives, pickled onions, Thai curries etc. This final week has consequently been a mixture of 4 and 5's again. But then, that might be normal, I've forgotten what that is...
3. Yoghurt. Firstly I can't make up my mind how I want to spell this - with or without an 'H'? I started on the Activia and then moved on to the Muller Vitality as I was informed of their PRO and PREbiotic attributes. There is not much I can say about these. During the period of 3/4's I was taking them regularly, and after the initial bloatedness all seemed well. Then last week, as described above, things not so good. But crucially, I got a bit lazy, and when I ran out of yogs I couldn't be bothered to go and buy more, so I stopped having them every day... Well, I don't know if that would make much difference... Also the vanilla ones are infinately better than the strawberry ones.
4. When I've changed the steroid dose, I have to go and have another blood test. Joy.
Thursday, 24 July 2008
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
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
Sunday, 13 July 2008
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
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
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."
"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?
"No. BUT ITS NOT DIFFERENT"
"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"
"ITS NOT DIFFERENT!"
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
Tuesday, 1 July 2008
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".
Monday, 30 June 2008
On to hospital matters. Tomorrow I have an appointment with my consultant rheumotologist. I have found him to be the best doctor I have dealt with. I have only recently been under his care, as I asked for a second opinion earlier this year, and was sent to him (due to the associated arthritic symptoms I suffer). I asked for this after repeatedly being at loggerheads with my gastro-consultant and his narrow-minded god complex. Below I have outlined a brief timeline of my colitis and the list of Q's I am planning to ask. I will report back tomorrow.
2002 - symptoms begin
2003 - Largest flare-up (May), treated with Mesalazine, which probably made it worse. Hospitalised and treated with IV steroids. Discharged with Mesalazine and oral Prednisolone. Relapse, medication reduced to oral prednisolone. Flare-up ended.
2004/5 - Intermittent flare-ups of associated arthritic problems. Treated with Prednisolone
2005/07 - Management of illness through lifestyle changes (e.g. stopping drinking alcohol). Mild flare-ups. No drugs. Acupuncture.
2008 - February: hospitalised with pneumonia. Treated with high dose of antibiotics (IV in hospital, oral on discharge). UC flared up following end of antibiotic course, end of March. Prednisolone (30mgs tapering on a weekly basis). Flare-up while on 5mgs lead to extended course. Flare-up after completion (first in colon, then arthritic June 7th – 12th). Back on Prednisolone, tapering 15mgs to 10 after one week.
- How likely is it that this flare-up has been caused by the Pneumonia Antibiotics?
- Would it be sensible to stay on a low dose of prednisolone for a while to attempt to get back to a stable situation (i.e. 2005 – 07)?
- If yes, what would be the recommended course of action? Can you prescribe me enough prednisolone?
- Gastroenterology want to discuss with me moving onto Azathioprine (essentially due to the recent flare-up following the prednisolone course in April/May) – what is your opinion on this?
- So, should I be considering immunosuppressant now?
- I believe Azathioprine has a maximum 5 year course – what happens if UC/Arthritis flare-up after that?
- Is Azathioprine useful in the treatment of the arthritic symptoms?
- Should it come to surgery, will this also end the arthritic symptoms?
- And my wife wants to know if there would be any benefit of moving to a warmer climate?!
Wednesday, 25 June 2008
Now, I'm due back at the rheumotologist next tuesday hence I finally had to bite the bullet. But herein lies the point to this post. Locally we have something called a polyclinic. Usefully it's very close to my school. I phoned them. They do bloods by appointment only. So I made one (mentally that meant I HAD to go) and off I went at 9.55 for a 10.05 appt. I was there slightly early, no one else was there: they whisked me in, bled me and sent me on my way. I was back in school by 10.05. I didn't even have time to consider what was about to happen. Admitedly I still had the shakes, heart-rate was up, nurse asked me if I wanted to "lie down", but, bloody hell, I felt much better about the whole affair. So it's they polyclinic for me from now on. I highly recommend them (though I don't know if they are peculiar to this area).
Tuesday, 24 June 2008
Saturday, 21 June 2008
Tuesday, 17 June 2008
1. The cinema: after weeks of promising the kids I would take them to the pictures to see Indiana Jones and the Whatever George and Steven Thought Of, I finally relented. This was undoubtedly a fatherly duty. Indy, presents no attraction to my goodlady, not even in a world-weary-quipping-rugged kinda way. Now this trip presented issues to be planned for on several fronts (including packing the spare pants). Firstly, the bus. There is no point in driving into our city centre at all on a saturday. You may aswell park your car close behind another and sit staring at it for a couple of hours. So, the bus it is. And very good buses they are too. But they have no loo. Neither does my car, but at least I dont have to share it with strangers (including the inevitable kids form school) in times of dire need or worse. So, there was public transport anxiety. Secondly, the cinema itself. There is, of course, the obvious issue of having to use the public toilet. This is something we have to quickly come to terms with. Sadly it is not something I am comfortable with yet, even after 5 years. Its not the noise, or the smell... its my troubling obsessive-compulsiveness. I have to lower seat with my foot: I could not possible touch it! I have to paper the seat! This can make for a fabulously amusing spectacle - well, I make the asumption that should anybody be able to see a man frantically trying to lay paper on a loo seat whilst simultaneously, desperately trying not to let go too early would be amusing. Ah, imagine that contorted body now! Indeed I have often felt relief-tinged amusement myself as I've finally plonked myself down only to waft all the paper off at that instant. That would be relief-and-revulsion-tinged amusement... However, the main issue is what to do with the kids should i have to suddenly make a quick break for the loo? My youngest (8) is arguably too young to leave in there alone - I think he would get frightened, especially if it was one of those longer visits. And yet, I might suggest that having to accompany me may be even more truamatic, and I'm not talking about missing a bit of the film...
2. The Barbeque: how do you go to someone else's house for a barbeque, expressly for a barbeque, and then snub over half of the food. I resent looking like some picky fool who doesn't enjoy his food, because that couldn't be further from the truth: I bloody love eating. But as the burger (homemade by my host) was hanging tantalisingly between my lips, someone mentioned chilli. "Aaaaaahhhhh, I cant eat this" I think, and thus slowly remove it from my mouth and place it back on my plate. Unfortunately this is not unnoticed: "Wots wrong with the burger?" "Oh, er, nothing. I just cant eat chilli right now." Only its been in my mouth so neither can anybody else now. Cue suspicious stares etc. Followed later by the same old 'what do you want to drink' conversation. Joy. Incidently I also had to forego the olives, homemade relish, houmous, amongst other things, leaving me sausages and salad. Great.
Having said all that, the preds have kicked back in again and the flare-up is dying down. I went up to 15mgs on saturday and have stayed there, but I guess that's still quite low. Planning to bring it down to 10mgs next saturday and then hold out until I see the consultant rheumotologist on July 1st. Still waiting for new appt with Digestive Diseases.
And now there is a man eating Italian cheese with maggots in it on TV. Why hasn't he got bowel problems?
Oh, and Indiana Jones... disappointing. That magic aint working any more. How depressing.
Friday, 13 June 2008
I begin with a quote from yesterdays post. Why? Because the UC has already insisted that I reflect on that statement. Two days back on the steroids (10mg a day) and the foot/ankle swelling has reduced enormously - goodbye flip-flops, hello again shoes! They're still very sore and my calves have got very stiff, but defo on the mend. All good eh? Nope. At 4.30am I was awoken by excrutiating stomach cramps and had to rush-hobble to the loo. Nothing happened. 6am, same awakening, this time with some outcome: loosish poop, say a number 5 on the old Bristol chart (why does Glasgow get coma, while Bristol gets stools?). Bloody hell, I was supposed to be going back to school today. I did go back and there have been 4 or 5 (lost count) further visits, following cramps at about 5/6 on the chart (mmm 'fluffy'). Damn it.
So, at the moment, I have decided that I absolutely still agree with the above statement. There is more dignity in hobbling, and it is easier to endure than stomach cramps and repetedly running to the loo. I think I might up the dose tomorrow, maybe 15mgs?
As for school, that was OK, lots of well wishers and a few fools who asked me how I was. Mwahaha - I soon bored them to tears with a full account of the current situation: the UC story never comes in small chapters...
Thursday, 12 June 2008
Sunday, 8 June 2008
At best, I would say that UC has made me a more reflective and conservative person. In many ways I am a far healthier person. Healthier that is, except for my colon, joints and... the fact I'm increasingly becoming a mentalist. I'm guessing that I would be typical of most chronic illness sufferers in that I am much more introspective than I ever used to be. I pretty much consider the consequences of every thing I do and, especially, eat. I literally cannot do anything on a whim or impulse any more. Virtually every decision I make is preceeded by the thought: "mmm, how will that affect the UC?". And I can talk myself out of anything on those grounds. I spend all day every day weighing up the relative importance of every twinge in my stomach and every bump or lump on my limbs. I have to constantly fight with myself to prevent my becoming utterly superstitious and reading portents and omens in everything. For instance, I can rarely bring myself to admit out loud that I'm feeling OK, and things are quite settled... that would be tempting fate. And, of course, I have to salute every bloody magpie that I pass. See, MENTAL!
So, it is with this crazy attitude that I have struggled through a weekend in which I have developed a cold. I'm afraid I am beyond the stereotypical man-flu archetype. Oh no, sir, no simple influenza for me. I had a particularly nasty bout of pneumonia in february and was hospitalized for a week (HA! as if i dont see enough of that place as it is) - it was horrible. I thought I was going to die. But I didn't. In fact I very much got better (another 6 week spell off work, but it must made a change for them to write pneumonia instead of UC on the paperwork. Incidently, 'hilarious' rumours spread among the kids at school like wildfire: cancer, AIDS... amputation!?). However, as a sniffle developed into a cold, and then moved down on to my chest, it has been terrifyingly easy for me to convince myself that IT'S BACK - I'M GOING TO DIIIIIEEEEE OF PNEUMONIA. God, I have spent hours breathing deeply to pinpoint any chest pain. I have tried repeatedly to take my own temperature - without a thermometer - "Oh Christ, I feel really hot..." yes, it's hot and sunny out today, you idiot. And most grotesquely I have developed a disgracful new habit of ejecting anything I cough up to inspect it for anything nasty (this has to be an extension of religiously examining poo). I don't even know what I'm looking for. Somebody heeeeellppp me...
Thursday, 5 June 2008
This damn colitis is so inconsistent - hoho, in so many ways...
- I've stopped taking the preds. Well, I forgot this morning - too busy making packed lunches for me and the boys, stuffing down toast and trying to squeeze in as many cups of tea as possible before work. So, thats that.
- I am feeling pretty good. Or am I? Stools are number 4 on the Bristol chart: like a sausage or snake, smooth and soft! Great, I love that chart. Occasionally they've even been a 3. Sometimes 2 or 1. But...
- Things aren't 'normal'. Not that I can really remember what it felt like to have a normal digestive system.
- I've been bloaty and hugely windy. Nice.
- And a bit crampy today, which was weird because that was before I produced the No. 4 in todays moment of glory. Cramp! Urgency! Enormous snakey log! Uh?
- Knees hurt. Have done for 2 or 3 weeks. Not swelling but hurting in an old-man-y artritic type way. Somethings definately active.
- Why-oh-why have short doses of prednisolone worked a treat for 4 years, but this time don't want to? Why do some poor people take loads of the horrible stuff to no avail at all?
- The other day I read someone suggesting nuts and tomatoes are the absolute anathema for UC sufferers. But my colon seems to love cashew nuts. Loves those little kidney shaped blighters. And, whilst I wouldn't eat a raw tomato too often, cook 'em and they're no problem. Its so inconsistent.
And now I'm getting a cold. Which scares me, because this recent flare began on the back of the anti-biotics I was forced to take because in Feb I hilariously came down with Pnuemonia! (apparently it's not just a disease for old men and junkies). Which started as a cold...
Tuesday, 3 June 2008
Without any power at all, I went off to school today. Well, only the power given by one 5mg tab of prednisolone. What I actually need at the moment is the power to stop taking it. I started this course at the end of March at 30mg's a day for 2 weeks, then 20mgs and so on. But when I got down to 5mgs it all flared up again. So, I went back up to 10mgs and stayed on that until this week. So I need to stop again, but if I do and then it flares up again... well, then I have to start facing up to having to manage things another way, namely Azathioprine. Maybe this is not a big deal, I can't decide. All I know is that I've been fighting without drugs for 3 years and I really thought I had it all under control. And then, through the dumbest luck, it all kicks off and here I am.
How much of all this is real anyway? Every morning I place my faith in that little white pill. But am I OK because my brain excepts the power of the pill and everything wallows in its calm? Whats 5 mg anyway? Is that really enough to do anything? Will I be responsible for causing a renewed flare-up because I keep stressing about finishing the preds? Why do I have to constantly think about this? Jesus, I've spoken to enough other sufferers and read enough other blogs to appreciate how bad things could get for me, but sometimes I think I spend 90% of my daily brainactivity thinking about this bloody disease. Even when its not doing anything its affecting my life.
Today was uneventful. Two visits to the bog at school, neither loose. One since I got home, little nuggets! Feeling bloated and farty still. But thats good enough for me.
Soothed by the sounds of Sparklehorse.
Monday, 2 June 2008
Sunday, 1 June 2008
This is not actually as hard as it sounds. As long as you have a terrifying week of UC related hospitalisation, that included having to ask a nurse to apply cream to your bumhole because it was agonisingly raw and sleeping opposite a guy whose body would not accept his lovely new colostomy, then its pretty easy. I have good mates, on the whole they have accepted the sober Rich with open arms.
However, it has turned me into badge-wearing, teatotalitarian, holier-than-thou, ivory tower dwelling bore. And everywhere I look I see the steady decline of our once great nation into a booze-ridden abyss. Except it was never that great anyway. There are 2 main things that I've noticed:
- In the UK every pastime/leisure activity has to be accompanied by drink. Going to a football match, going to the beach, going on a picnic, having a barbeque, going to the shops, walking down the street, going on the bus, watching telly, etc etc etc. OK, so I exaggerate, but I did walk past a park full of people on one of our recent sunny days, and I thought "how pleasantly european", until I got close enough to see the sea of empty bottles and cans, and the apathetic blobs of lobster red flesh lolling in the sun, whereupon 2 blokes staggered out of the park and confronted me with incoherent obscenities. Why oh why oh why must sun=pissed? And now look, I sound like some retired old gimmer from Sussex.
- British people view you with suspiscion if you dont drink: "what can i get you to drink mate?" "Oh, cheers, I'll have a coke please" "Coke? Wot, you drivin'?" "Um, nooo, I er don't drink..." "Wot?" "I dont drink." "WHY?" "Well..." So how do you explain that you have a disloyal colon and drinking may infact lead to you pooping your pants, perhaps even by the end of the night? One chap (looooovely guy - rugby playing pig farmer) once threatened to "punch" my "f**kin face off" because I wouldn't drink the lovely pint he'd insisted on buying me. Still, he was pissed, so thats ok...
Anyway, I've now taken to saying I'm a recovering alcoholic which proves to create awe amongst those I'm talking to, and actually has lead people to vehemently tell others not to buy drinks for me.
Well, I went out for a good friends birthday last night, and drank loads of coke and couldn't sleep afterwards. But none of them care if I drink or not, God love 'em. So, it was a great night and the only thing I had to complain about was the volume of the music... Just call me Victor.
Friday, 30 May 2008
Here's a funny little drug. Its a corticosteroid, which means it can reduce inflammation in your body. I don't know why or how. I am currently tapering down a course of these, now on 5mg a day. This is the 4th course i've taken in 5 years.
The first time they were pumped straight into my veins in great big doses, which I was thankful for because at the time I thought I was going to die by gigantic rectal prolapse that would include most of my internal organs and probably my head. After a week of that I was released from hospital with a big bag of oral tabs starting with 80mg a day. These babies did the trick and after 8 weeks or so I was back to normal and at work again (I never thought I would be pleased to be back to work!).
Subsequently I have taken shorter, lower doses for flare-ups although these have been mainly due arthritic symptoms - limb inflammation to elephantine proportions that is at once both hilarious and soul-destroying. Again, they did their work and life went on.
Then I had a period of semi-remmission (could've been the acupuncture, but thats for another post) and didn't touch the little monkeys for nearly 3 years. Until now.
Why now? Well thats for yet another post (Richard's world of stupid health stupidness, thats what I should've called this blog). Instead lets consider some of the side effects. I think I've been pretty lucky here, but they have definately had some effects.
When I read the info sheet that accompanies the tabs (I can never decide whether this is a good idea or not) my eyes are inevitably drawn to the phrase 'moon face'. A moon face!? What the f**k? "Yes sir, these tablets will solve your bowel issues... but you might end up with a face thats huge, round and pitted. Oh, and it lights up too just in case anybody missed it..." Moon face? Surely there's some other way of describing it that won't instantly make people see their future involving a channel 4 documentry production team? Fortunately (especially in my job) I've not experienced this effect. My heart goes out to anybody who does.
So, what effects have they had. Well:
- Roid rage - an internal boiling that I am aware of, but just can't keep a lid on. Eventually somebody is gonna break the camels back and whoa... run away, people, run away.
- Appetite increase - I'm not sure if this is real or just because I read it on the info sheet its become a handy excuse for STUFFING MY FACE WITH CRAP.
- Shakes - for goodness sake, like some old geezer. And why do people like to point this out to you all the time: "Hey, you're really shaking!" I KNOW (cue effect 1)
- Acne - Oh god, I'm so vain (I bet i think this blog is about me... oh, it is). I didn't suffer much in the way of spottage as a teenager - why now God? WHY NOW? (cue effect 1)
- Hair loss - this is a new one. Is it cos the preds caused me to grow more, and now it's shedding? Or am I just starting to lose it anyway? Bald, at 35? Noooooooo (cue effect 1).
So, why is it a funny little drug? Because this time it aint working properly and the consultant keeps talking to me about Azathioprine... but I can't hear him properly... mmmmmmmm