Thursday, 15 January 2009

Good news...

...and bad news.

The good news is that I have news. Another good bit of news is that my small intestine appears to be absolutely beautiful.

The bad news is that the rest of the news is that I've probably got Crohn's disease. This is a bit of a bugger.

I had an endoscopy and colonoscopy last Monday. As I was explaining to the trainee endoscopist [not a good start - the last thing you want to know about about the person who's going to stick a camera up your jacksie is that they're not yet qualified to pilot the damned thing through your intestines], I was really rather keen not to have Crohn's.

See, my father has Crohn's. He also has rather less intestine than he used to have, rather less of both femurs than he used to have, far less content of his right thigh than he used to have and, not to put too fine a point on it, has been pretty much crippled for large portions of the last thirty years. As far as I can make out, most of the afore-mentioned troubles were precipitated by his Crohn's or the treatment he received for it.

Having a colonoscopy is a pain in the arse and rather inconvenient at the best of times. On Monday morning it seemed even more so as I was reasonably confident this was an academic exercise aimed at finding nothing whatsoever and of value only to support the conclusions that the healthcare professionals I've encountered have reached, which are that a) I have crap guts and b) running around and jumping up and down in pursuit of something called 'training' probably isn't helping them function. Regardless, I duly ate a low residue diet on Saturday, then starved myself on Sunday, took the prescribed laxatives (£14.20 has never been so badly spent) and endured a night on the loo, followed up with doing the 'nil by mouth' thing on Monday. So, I was sufficiently low on energy, dehydrated, pissed off and emotionally fragile when I got a call from work at 11 am on Monday morning requesting the impossible by mid Wednesday. I put in a fleeting appearance in the office and then sped off to outpatients.

I'd done a double outing on Sunday morning without breakfast and with no food to look forward to for the rest of the day. I felt cold and just a little bit sorry for myself. Even without feeling fragile, the temperature on Monday was a bit far south for my liking. As I discovered, the endoscopy recovery room (which doubles as a waiting room) was a bit parky, too. Still, I showed up on time for my appointment, changed into a gown and shorts and got increasingly cold and thirsty as I waited another couple of hours before I could have the endoscopy and colonoscopy, shivering under my jacket in the small, dingy cubicle. It was getting on for eight hours after I'd last had a drink, and about 40 since I'd had food. A sense of humour failure really did not seem far away. With the benefit of hindsight, this may not have been the best time to settle down to reading a badly-written 100+ page document which is currently causing much work stress. It wasn't easy to read. I wasn't sure whether this was because I was having difficulty concentrating, or because I the document was poorly written. It was probably both.

I finally got seen at around 4pm. The endoscopy was pretty quick, I was nicely sedated and pain-free. The colonoscopy... well...

I suppose other than being a bit pissed off at the regular discussion between the trainee and the fully fledged endoscopist about 'inflammation', 'ulceration' and 'probably Crohn's', and other than having to negotiate with the dude with the camera to stop causing me so much pain trying to get around a particularly inflamed corner of my colon (not fancying having to go through all the prep again, I eventually settled for having more painkillers so they could continue), it wasn't that bad. I did find the reassurance that they'd 'nearly finished' to be a tad inaccurate (on a number of occasions), and was a bit alarmed at the sheer number of biopsies taken, but by the time they actually nearly finished, I was just bored of the whole thing, rather keen to get the oxygen tube out of my nose, the cannula out of my elbow, stop having my blood pressure taken every five minutes, clean myself up and get out of the hospital. Oh, and I was thoroughly unimpressed with their language and the evident likelihood that I had Crohn's.

When they did eventually finish, about an hour and a half after they'd started, I was properly alert and rather alarmed at the images of my inflamed, diseased and ulcerated bowel. I asked for a drink. I didn't get one.

I was wheeled back on the trolley to the recovery room, and hooked up to more monitoring gubbins. I asked for a drink and for the cannula to be taken out. I got a small plastic cup of water, which I gulped down rapidly. The nurse who had handed it to me seemed surprised to note that I appeared thirsty. The phrase “No shit, Sherlock” ran through my head - I'd had any liquid in me drawn out by the sodding citramag and then been denied the opportunity to drink anything for six hours before my appointment time. It was now three hours after my appointment time. Surely it wasn't that surprising that I should feel thirsty...

My 'responsible adult' (in the guise of my boyfriend) turned up just in time to be around when the trainee endoscopist came bearing the 'news' that it looked like I've probably got Crohn's disease.

Despite already being aware of this, I wasn't a happy bunny. I make a crap patient at the best of times, and generally don't hold up well to being starved and dehydrated. Being a starved, dehydrated patient receiving news which isn't exactly great, the only sensible course of action seemed to be to burst into tears, which I duly did. Handily for me, my responsible adult has a superb bedside manner.

A nurse showed up shortly afterwards to remove the various bits of gubbins I was still attached to, and to ask whether I'd like some tea and biscuits. She really didn't need to ask. Apparently I was now also fit enough to clothe myself. I rapidly changed out of the gown and shorts and relieved the endoscopy unit of their biscuit supplies, and by the time I'd worked my way through a couple of packs of jam dodgers and a small stack of bourbon creams, I was feeling significantly more human. Another couple of beakers of water didn't go amiss, either. By the time I'd been escorted home, I was almost feeling like my normal self. Then again, as my normal self at the moment has a colon of which half is ulcerated to buggery and back, doesn't get enough sleep, and is generally fairly ratty, it didn't take that much improvement to restore the status quo.

Despite the sorry news, I'm better off than I was a couple of weeks ago, as I've at least got some idea of what to expect and what I might be able to do to control and alleviate the symptoms. This won't necessarily stop me from feeling a tad sorry for myself if I have to live with Crohn's, but hey – at least it looks like I've got something that I can live with. That's a damned sight better than coming away with a diagnosis of, for example, bowel cancer.

13 comments:

trousers said...

Always a very mixed bag, receiving this kind of news, for the reasons you've described: on the one hand, the prospect of learning to live with something which may carry further consequences for your long-term health; on the other, at least you now know what you're up against and what steps to begin to take to make things better than they currently are.

With great respect due to your dad, I hope that the outlook is better and more manageable for you than it presumably was at the time that he was first diagnosed.

Anyway I'm blathering: the main thing is, my thoughts are with you, and I'm sending many hugs to you. Take good care of yourself!

xx

Anna MR said...

Hugs, Dr Why?. Not much else I can say or give - although I have a friend who was diagnosed with Crohn's a few years back and she seems to have found the way to manage her symptoms okay - but I think you already know more about the illness, its implications and methods for coping than I do.

So, you know, just hugs. As young trousers there said, take good care of yourself.

x

Kahless said...

Hearing your father has Crohn's then you know an element of the score.

I am a tad inebriated at the moment. So probably cant write much of a meaningful comment.

But Dr Why.

I understand, because I have Crohn's disease. For 24 years now. What I hated the most about speaking to other Crohns people, is "the bowel" conversation, lol!
So I dont want to be one of those people to you!

You have my support. As I said, you know the score from your father. But if you have any questions you want to know, ask me. My email is on my profile.

As I said, I get it.

A long time ago, I wrote my story. It is here

Random Reflections said...

That all sounds really unpleasant and I would have cried much earlier than you did (and possibly killed someone due to thirst and hunger).

Sorry the news wasn't better.

Stray said...

Ick! Dr BW, I did kinda suspect this would be the outcome but ouch, what a bummer (no pun intended).

Last night Badger and I had a vision of you winning the Krypton factor next year. That might have to go on hold perhaps?

You yourself know that, just as having asthma means a ton of different things, having Crohns is a pretty variable diagnosis. Unpredictable.

I don't remember unpredictable being your forte...!

Time to ask some big questions maybe? Perhaps work is less crazy now, but you are the only person (outside the NHS) I have ever met who made me feel work-shy :)

Wishing you well, you should have told us so we could duly return the get well card thing you've executed so beautifully at times when Badger or I have malfunctioned.

If a stint in the middle of nowhere suits as respite you know where we are! Ruby misses you too.

xxxx

Rob Clack said...

I can't think of anything to say, but I think the comments so far cover the rather numb thoughts going on inside my head right no.

Hang in there, kid.

But Why? said...

Trousers,
Cheers for the thoughts. I'm planning on taking good care of myself - and considering ditching the rowing in favour of weekends spent having lie-ins and catching up on the sleep I haven't had during the week, and possibly getting the twenty minutes of light exercise each day which seems the limit anyone's prepared to recommend for people with Crohn's. Still, I'm happy to say I'm fairly optimistic that my Crohn's won't lead me to the crapness that my father suffered.

Anna,
Hey, lovely to see you. I am rather hopeful that in a few months I'll be settled with some shiny new drugs and have a happier colon. Meanwhile, it's all just a bit sh*t.

Kahless,
Don't worry, I shalln't seek you out to exchange stories of digestive incompetence. I had a read of your story - and I do think I'm rather lucky to have got to nearly thirty without being diagnosed. The kids with Crohn's have it rough...

Random,
Hi, and thanks for the reassurance that I wasn't actually being the world's biggest wuss last Monday. I do feel a bit of a wuss today, for some reason. Too much work, perhaps? I'm sure a decent dinner will see me right, though.

Stray,
Ah, now, a short stint in the middle of nowhere might be just what I need. I'm not feeling like a potential winner of the Krypton factor atm, it must be said. In fact, I'm feeling rather a weakling and a physical invalid. More steak and sessions in the gym are needed, obviosuly...

Rob C,
Thanks for the thoughts. I'll see what I can do on the hanging front. (If only it was infectious, I'd happily hang whichever little sh*t gave me this. It might not be productive, but it could just make me feel a bit better. But it's not infectious, and just as well...)

Gael said...

Sorry to hear that you've been having such a crappy time. However, from what I've read here before you strike me as a glass half full type of person, and I'm sure you'll take this all in your stride.

Thinking of you

Reading the Signs said...

So sorry to hear this Doctor Why. I also know people with Crohns who have found ways of managing it, but everyone's picture is a bit different. Warm thoughts to you from the forest edge.

But Why? said...

Gael,
Thanks. I'm trying to see it with a glass half full point of view. I can't say I'm chuffed by it all, but the last couple of weeks seem to have been no worse than any of the previous twenty or so. As far as I can make out, the worst part is spending small eternities at outpatients on a ridiculously frequent basis.

Signs,
I'm sure I'll cope - I make a very poor patient, at any rate. I did get some rather disapproving looks from gastro-man when I told him I was still rowing - you'd have thought he'd be pleased...

DJ Kirkby said...

I have to say I am not suprised form your symptoms but had no idea tha tyou already suspected this diagnosis yourself. You never let on in the posts I read. I am glad tha tyou are able to put a positive spin on it despite your father's experiences with it and perhaps the NHS has made advances in treating Crohn's on diagnosis, since your father was diagnosed.

Wayfarer Scientista said...

erg... definately amixed bag of news but the best of it may be that you are diagnosed and now can be treated and thus feel less crummy? I hope anyway.

But Why? said...

DJ,
I figured when I took some anti-inflammatories back in Sept/October and they brought about a dramatic improvement in my symptoms that I probably had something more than IBS, but was rather unwilling to investigate further. On the up side, the drugs seem to be helping a bit, but I'm not enjoying the headaches which I've recently been subject to and which I assume are a side effect.

Wayfarer,
Yup. I wasn't too happy to face having Crohn's. It wouldn't have been my first choice of chronic bowel problem. Still, the medics are apparently less aggressive with their treatment now, so at least I shouldn't end up replicating my father's journey.