I am 37 and a teacher. I am a happily married man with 2 boys aged 13 and 10, and we live by the sea. I have had UC since about the age of 30. These are the ramblings of man trying to come to terms and deal with a chronic disease whilst maintaining some sort of normality.
I've been doing the relaxation/hypnotherapy for a week or so now. So far, so good. What has been really interesting to me is that it is something you have to work at. Maybe 'work' isn't exactly the right word. Put it this way: it is not something that happens to you. I have not ever had anything like hypnotherapy before and I think I was expecting to 'play the tape' as it were (er, initiate the mp3?) and go into some sort of trance or zone. The first time I listened I waited for the lovely-wife to go out for the evening (there is an inextricable part of every true-blooded englishman that screams (internally, of course) whenever one is forced to participate in anything that could possible be deemed 'whacky', but is in all likeliness just a little left-field, and an inevitable shroud of embarrassment/defensiveness/denial descends). So, despite the fact she has witnessed pretty much all there is to witness when it comes to the embarrassing aspects of my life, be they UC related or otherwise, it seemed unthinkable to tune in with an audience. I realise this is a deplorably negative start to preceedings, but, well, lets call it teething trouble. Off she went and away I went. It was difficult. I worked really hard to not feel a berk, and succeeded in allaying those feelings. But, I was apprehensive. There's alot riding on this for one thing, but my bigger fear was the ridiculous notion that she would come home to find me sat glassy-eyed in the dark, or in knee-hugging psychosis in the corner of the lounge. (If you're scoffing at these nonesensical qualms, let me tell you I did pay full regard to the voice of no-reason-whatsoever in my head that postulated the idea that in fact Guy is a meglomaniac of Bondesque proportions whose master plan is to hypnotise people into being sleeper agents, unknowingly of course, ready to be thrust into action at some predesignated doomsday hour... the manchurian congregation if you will... I should clearly state here that this is ABSOLUTELY NOT THE CASE, just groundless anxiety of a novice in the world of the truly broadminded). Naturally this was not the case, but I think the level of anxiety I achieved was such that I was not relaxed enough to take full advantage of the session. I had real difficulty in focusing on the suggestions and using my imagination where required - my brain repeatedly over-rode the tape and kept thinking of other stuff. Stupid brain.
The second time was better. Knowing what was coming helped. And I no longer felt the need to listen in secret. It reminds of the time I had counselling, about 8 or 9 years ago. I was lucky, I had a very good, very patient counsellor. If I'm jaded, cynical, and narrow-minded now, back then I was utterly imprisoned in the idea that it was me against the world - what could some guy called Bob conceivably do that I couldn't do myself? Of course he didn't do anything, he just let me figure it out for myself... the first session was spent in almost complete silence - I don't know if I was trying to psych him out or what. I think I was expecting the old 'lie on the couch and tell me about your father' routine, but he just sat smiling and waiting. By the third session I was spilling my guts and really all Bob did was to guide me through the fog of my own thinking - he never once told me what he thought, just helped me pick apart and sort out my own thoughts... And so I realised I don't just sit and listen; I have to be involved, albeit in a very very relaxed open-minded kind of way. Unfortunately, I left my bedroom window open and someone was being noisy outside and this kept creeping into my brain and knocking it off track. Stupid brain.
Anyhoo, I persevered, and third time out I had a break-through. I was really relaxed, and I was really focused. Relaxed and focused. Yep. Felt good.
And time number four was a revelation! For me, music is life. So much of what has happened to me is hung on one song or another. I always come back to music for uplift or come-down. So I tried something and it worked. The utter oneness that can be achieved in the relaxation therapy can be prolonged and, may I even suggest, heightened by following it directly with track 1/1 from Brian Eno's Ambient 1: music for airports.
He is said to have written it:
with the intent to defuse the tense, anxious atmosphere of an airport terminal. Eno conceived this idea while being stuck at Cologne Bonn Airport in Germany in the mid 70s. He had to spend several hours there and was extremely annoyed by the uninspired sound atmosphere
I'm not sure how effective it would be in airport, but combined with the hypnotherapy/relaxation session it has conspired to create one of the calmist, most assured and healthy weeks I can remember for at least a year. If nothing more comes of this, I would thank Guy, Geoffery and Brian for that.
Recently there has been much exchange of opinion with regard to alternative therapies and UC. This is great. It is a basic truth that all people should be able to take their chosen route through the wilderness of managing any chronic disease including IBD. Some people are lucky enough to find a workable solution in 5ASA drugs, for others the world of immunosuppressants beckons and proves fruitful. Some embark on life-changing surgery and change their life for the better. Some people dabble in the mysterious world of alternative medicine, whilst others follow it with devotion. Some of us try the whole damn lot. The thing with this disease in particular (I am not informed enough to comment on any other illness) is: everybody seems to find their own pathway to the outcome they want. It may be a long, long road, and it may be painful and sometimes we may be crawling down it on our hands and knees... but we slog on until eventually we find a way to cope, to have a life.
The fact is, though, you've got to try. I have learnt lately that there is no use in just stumbling on with the status quo. You got to strive for whatever you want, whatever you need... sorry, that was unnecessary. (If this means nothing to you, see below. Can I just add here, that I am in NO WAY a fan of this band... honest). Until last week I have simply been finding ways to convince my doctors (gastro and GP) that I need the prednisolone for a little longer. No other drug has worked for me like the horrible little preds when it comes to getting some normality in my life. Mesalazine, Salazopyrin, Pantasa, Azathioprine, 6-mercaptopurine... every single one of 'em has made me more ill. Either massively worsening UC symptoms (mesalazine, 6MP, salazopyrin) and hospitalising me, or making my liver go apeshit (hello azathioprine) and hospitalising me. And so it was that my next dalliance was inevitably to be with infliximab. I have been wary to say the least. But this is all the hospital are offering. Great. It might work... or it might not.
So, I (with some help) have stepped off the 'road of quo'. I have got to. I have to do something. This will be the difference. But this is just me. Lots of people have latched, rather angrily, onto the phrase "you have to want to be well", in order to, rather angrily, criticise Guy Cohens therapy methods. I understand. But I'm not going to let one turn of phrase stop me from trying. I absolutely DO want to be well.
Consider this. I had this conversation with my consultant about 18months ago:
Him: You need to start immuno-suppressants...
Me: I'm not sure, I'm quite worried about their side-effects.
Him: The side-effects are not as bad as the symptoms of UC.
Me: Have you taken it then?
Him: pause... No.
Him (and I quote): Look Mr Rich, do you actually want to get better? I'm trying to give you a drug that will keep your UC under control. But, if you don't want to get better, I don't see how I can help you..."
I have ordered Guy Cohen's book (available on Amazon) and I have downloaded the free relaxation therapy session with Geoffery Glassborow... I have made a step down a new road.
But I haven't started yet. This is a big deal for me. I want to be rid of UC. I am utterly indoctrinated by contemporary western medicine. I am trying to open my mind. Quite successfully as it happens. And you know what? All the people I care about with whom I have discussed giving Guy's therapy a go have been... really supportive. To the degree that it has almost brought a tear to my eye. Even the lads, as jaded and cynical as me, have said "you've gotta give it a go mate".
Challenging and changing a belief system is not easy. Once upon a time, right up to the mid-UC days, when the doctor said 'jump', I quickly asked "how high?". Slowly, and painfully I have learned to trust my own ideas too. I would never dismiss medical advice out-of-hand, but actually I have to admit that I have a sound knowledge base about this disease, and, perhaps more importantly, I have the best understanding about how it effects ME. And so I have moved from the man who asked "how high?" through the man who asked "why do you want me to jump? Explain to me the jumping thing again...", past the man who suggested "actually doc, I'm not convinced by your argument for jumping, perhaps I could try hopping instead?" right up to the man who states "Ok, doc, this jumping thing definitely does not feel right for me, the outcomes are all wrong and the side-effects outweigh the benefits, so no, I won't jump...". And, of course, the doctor then decided he'd maybe been a bit hasty and that it was far too early for jumping.
Getting to the point where you feel empowered enough to speak up for yourself in the face of inappropriate treatments and/or drugs is one thing. But, opening your mind to a whole new way of thinking (albeit one that is fairly easy to see the benefits of) is a whole other matter. I've done it before though. I tried acupuncture when my associated arthritic problems were at their worst, and for three years it seemed to work wonders. I arrived at that treatment as a cynic, but told myself 1 billion plus chinese can't be wrong, and actually found it one of the most peaceful and relaxing treatments I have ever had. And spent nearly 3 years on no drugs whatsoever. Make of that what you will.
I was explaining my current decision to someone who's knowledge and experience in the world of psychology are thorough... testing the water, if you will. Someone who's opinion I value. And, of course, they were very supportive. But, more than that, they really struck a chord, and flicked my motivation switch when they postulated the idea that if I was even just considering giving this treatment a go, then I was already opening my mind...
I have felt better in the past few days than I have for ages. Not just UC-wise, but in general. Perkier, optimistic, more energetic, dare I say even happier... just because I feel more positive. I feel in control, because I have decided what to do. I have read plenty of nay-sayers and negativity-mongers. I have thoughtfully considered the power of placebo. And, ultimately, what really matters is how I feel. And I feel good.
I stride into the Royal Sussex County Hospital in Brighton with a spring in my step. I have boy 2 with me due to the usual childcare shenanigans - this is his second trip to a gastro appointment with me, at least he'll have some grounding for how to argue with a consultant in the future should he ever have to, god forbid.
My mind has been focused on this appointment for the last two days. I have been gliding around on rollerblades of elation. I don't want to sound like some dude who's just been pressed into the duplicitous embraces of some preying sect, but I havn't felt this good in ages, over 6 months if not more. The key here is i suddenly feel like I've just taken back control. I've wrestled my tenuous future out of the slightly disingenuous hands of somebody else. I don't really think that my consultant is insincere and double-dealing, but he and I have definitely been travelling down a path of inevitability. Try this drug, try that drug, try this drug as I'm drawn slowly but inexorably toward surgery like Indiana Jones on a conveyor belt into rock-crusher oblivion. Well, I've just side-swiped that evil-henchman sucker with my bag of indigenous idols! Yeah! And now I'm riding the abandoned mine-cart at knuckle-whitening speed toward the waterfall of freedom.... well, enough of the Temple of Doom based metaphor.
This fizzing positivity is effecting the world I orbit. Traffic parts in front of us as we drive toward the hospital. I am not exaggerating when I say our journey there is quicker than I have ever managed in the car. So much so, that we arrive on Level 9 30 minutes early, even having loitered in the little cafe in the childrens hospital. I check in, apologising for being early (so english!), and take a seat in waiting area 1 (I love the way in my gastro dept, they make you wait in one place then call you through - the novices faces light up "ooo i'm through..." - weigh you (12st 9lbs: eek more weight-gain... hang on, thats a GOOD thing: if I'm gaining weight the UC can't be bad. Ha! I'm getting the hang of this), then make you sit and wait just round the corner, out of sight of the first waiting area. Very clever). For a moment I doubt my new-found resolution when I discover I've left my book at home. Bugger, a long wait with nothing to read. Fortunately the boy has his book, so he's cool. Glancing round the seating area it dawns on me how many people there are in today, more doubt just starts to peak into the light... then before i know it I'm being called through and weighed. Before I get a chance to determine which registrars are new, the Nurse Practitioner, for 'tis she that I am seeing today, is calling me through to her room! I am in and being seen 20 minutes before my actual appointment time. I have waitied for hours in this place before - once they even managed to forget me and in my wonderfully english manner I sat there until they were closing up..., but this time, FOR THE FIRST TIME I'm in early. My nurse actually remembers me and asks me a personal question straight away. No going over old ground, reasserting who exactly I am (I don't blame them for this - I have the same problem when the parents of kids I teach greet me warmly by name in the street, while I scrabble around my mind for their names, their childrens names, whether or not they are actually parents etc). So we cut to the chase.
"I'm here to arrange the start of treatment with infliximab" I state.
"Your chest x-ray was clear, so we can get up and running straight away"
"Well, the thing is... I'd like to leave it for the time being"
She fixes me with a stare and raises one eyebrow - we've had many an argument about beginning drug treatment (most of which I've been proved right in, even if the evidence has cost me several days in hospital).
"Ahhh. Are you off the steroids then?"
"No. But I have reduced my dose again... 5/5/10mgs over three days" ( the power of positivity encouraged me to do this)
"So, 5 one day, 5 the next, then 10?"
"But you don't want to start the infliximab... yet?"
"No. Look, I'll be honest with you. I'm going to try some alternative therapy instead"
"Oooookay. What is it?"
"Well, it's a sort of hypnotherapy, perhaps a little like CBT"
"Right" She writes 'CBT' on my notes, "And where are you getting this therapy from?"
"Ok, listen..." in for a penny, in for a pound, "I write a blog and I converse with many other bloggers and sufferers out there, and through one of the other bloggers I have been turned on to this apparently effective alternative therapy, by a man called Guy Cohen... who rid himself of UC"
She slowly writes 'Guy Cohen' on my notes. Which I actually thought was a bit weird.
I could see in her eyes she was doubtful. But i must give her credit. She was ultra professional and as much as she could be when really bursting to say "it'll never work" she was supportive. She said:
"Ok. You have to try anything that feels right to you. But, i don't want to lose you back into the system. I want you to make another appointment because getting back in can take a long time. How long do you want to leave it? Any time, because we can either cancel it if you're feeling well, or bring it forward if things go pear-shaped..."
"err, three months?"
"Great. I really hope it works for you Rich"
She really meant that. And then I left. Five minutes before I should have gone in...
Why do my fingers hover over the keyboard? Why do I hesitate to type these words...? Here's a scenario:
I arrive for work today in a new suit. I don't normally wear suits to school, I've got a few but they cost a few quid (not loads... I am a teacher(!), just too much to get them trashed in school), but this one I bought over the summer in H&M for £80, which in suit terms is cheap as chips. So, there I am, in me new whistle, and it garners a few comments - people react when you wear something different - all of them positive. Which is nice. For the old ego. But it also leads to quite a few people saying something along the lines of: "You're loooking really well... how are you at the moment." (As I have mentioned before, I am, basically a UC-bore, at least 50% of the people at work know about the colitis. Talking is my therapy). And I begin to mumble and stammer... "Er, yeah, you know, not bad, all things being equal, ok, yeah, erm, I'm ok as it goes, musn't grumble, not bad, day to day I'm pretty well... at the moment." Then I say something about still being on the steroids and having to go back up the hospital soon, and their eyes glaze over and they start to wish they'd never even approached me, never mind complimented my suit.
Why can't I say it? I've even banned my family, close friends and acquaintances from both asking me and stating their opinion in the affirmative... What am a waffling incoherently on about?
Yep. Even now I am forcing each finger down onto each key. This is taking ages. My typing is slow enough, but I am holding my left index finger in my right hand and forcing it to press down on the keyboard like a man caught in some crazy old Hammer Horror, desperately typing a note explaining everything before his demonic left hand creates merry havoc. I just cannot say (or type)...until now...
"You know what? I'm feeling pretty bloody good right now. Yep. Pretty. Bloody. Good."
Because... admitting that I'm feeling good would be tempting fate. Would be inviting old Beelzebub himself to pop up and tickle my entrails. Would be tantamount to shouting from the top of a mountain, "Here I am, make me ill". It's like daring to believe your team can win - the old sport fans safety net: England probably won't qaulify for the world cup, the england cricket team probably won't win the ashes, betting your team will be relegated at the start of the season, just in case, giving yourself a get-out: every win is a bonus.
I have been following Martin's latest journey over on 'Number Twos' with great interest, and it's lead me to reflect on the origins of my UC. Why exactly have I got ulcerative colitis?
The NACC (amongst most other organisations you might care to look at) pretty much states that nobodyknows why (summary sheet). But there must be some clues. It can't be totally arbitrary. If the idea of genetic predisposition is correct, then surely there would be another poor soul in the family doubled up with a dribbly bottom and cramping gut? But there isn't. Unless they're keeping it very secret. So, what other factors could there be?
I was diagnosed in about 2003, and I guess there were increasing symptoms over a period of a year or more before this. This pretty much coincides with my beginnings in teaching. I qualified in 1999, after a year of placements/university, and spent my first three years in a failing school not doing much teaching, essentially learning how to manage a class . At the time I was of the opinion that I was pretty invincible, but in fact the job was taking its toll - eating my energy and, although it took me a long time to admit it to myself, causing me to become extremely stressed. When I left that school after three years I was mentally and physically shattered. Looking back, I can remember having to run from my hilariously under-resourced classroom down three flights of stairs to the toilet on a daily basis. I can clearly remember halting half way down, gripping the banister, gritting my teeth, and devoting every ounce of my being into not pooing myself. At the time I put this down to being just a 'regular' guy - it was always in the morning, before the start of lessons. In retrospect that seems utterly ridiculous, especially as it was often extremely loose (though I don't remember blood), but I'd never even heard of irritable bowel, never mind UC. I spent 10 weeks of the last year having counselling because I'd hit rock-bottom mentally.
So, could this build up of stress have caused the UC? There sure was a hell of a lot of repressed negativity And I'd never had any symptoms before... or had I?
When I was just 17 my parents split up. Without seeming trite, at the time it wasn't emotionally such a big deal. My dad was in the military and spent long periods away anyway. The worst was watching my mum fall apart. Around the same time I was plagued with a persistent inflammatory problem in my knees - like arthritis. Several doctors and blood tests could not pinpoint anything, and so I was repeatedly treated with Brufen (like ibuprofen) over a period of about 12 months. Knees swelled, consumed drugs, knees reduced, stopped drugs, knees swelled, took drugs, knees shrank, stopped drugs, knees swelled... ad infinitum until one day they just never swelled again (until the last 6 years). Was the inflammation caused by bad home vibes? Is this the real origin of my UC? Or did the prolonged prescription of anti-inflammatory (NSAIDs) medication actually damage my immune system/colon?
Could any of these things be isolated as a cause? Could the impact they had on my mental well-being be isolated as a cause? Would a doctor tell me that one or all of them were just the trigger to a chronic disease already lying in wait, like some afghan road-side bomb? Have you ever tried to discuss why you have colitis with your consultant? They're more evasive than a politician at an expenses hearing. I sometimes even wonder whether I have UC at all - maybe I've got something else entirely that just manifests itself in my bowel and limbs...
The single most conclusive discovery I have been able to make is that alcohol was definitely part of the problem. I drank pretty heavily (come on, I'm British) from the age of at least 17 until I started to cut down a year or so after the initial tentative diagnosis. It was undoubtedly a trigger to worsening symptoms. This is a fact corroborated by many sources e.g. Colitis UK. But maybe it was the initial cause too. Maybe I just drank too much... I don't drink any more - 4.5 years of teatotality this month - and the UC's not gone... but I don't get such severe episodes either.
So, why-o-why-o-why? Is the UC a sleeper agent in people like me, just waiting for the call to action? -Who gives the call? Why? When? Is it triggered by my own brain: anxiety, nerves, stress? Or is it triggered by me behaviour: drinking too much, too often? Or is it the result of misdiagnosis or mistreatment: too many NAIDs?
The fact is it IS triggered by all these things. But the question remains. What caused it in the first place?