Sunday, 15 May 2011

The Last Post

Just under a year since my initial op (proctocolectomy to remove my colon) and just over 7 months after my final op (re-plumbing me internally so that I was rid of the colostomy bag) and I think I am now ready to make my last post to this blog and draw a line under this whole experience. A damn good feeling.

When the initial operation was scheduled I targeted today as the point by which I expected to be 'officially better' by planning to ride the "Etape Caledonia" (an 81 mile cycling sportive in Perth). My surgeon (who rides the event every year) was wary of this plan and when everything went pear-shaped after the first op (see posts passim) it did seem a rather optimistic objective. In fact, if you will forgive the melodramatic tone, there was a period where the idea of riding at all seemed unlikely.

But everything has gone very smoothly in the last few months: I am fit and healthy, I have recovered my old energy levels, I'm working at 100%, and I have regained all the weight I lost.  I passed a significant hurdle a couple of weeks back when I made a business trip to China and coped with the stresses of long-haul and internal Chinese travel.

But cycling has been my key recovery benchmark.  In February Jane and I had a trip to Lanzarote and I started trying to ride my bike properly.  Subsequent lapses in my training discipline were duly punished a couple of weeks ago - over the course of a long weekend -  as I was dragged around some North Yorkshire rides by my mates Chris, Matt, Dave and Naythan.  It was a sobering experience but just what I needed to shock me in to shape -- I'm very grateful to the lads for their support and patience as they waited while I grovelled up the climbs!

So today I rode the Etape Caledonia:  81 miles in 4 hours 11 mins (i.e. a 19.4mph average).  Nothing spectacular (and I cringe thinking of my serious cycling mates reading this) but above my expectation and I'm calling it as "a respectable performance".

So that's it. This blog has served it's purpose for me by allowing me to off-load my introspective angst, indulge my moments of self-pity and keep my friends up-to-date with progress in a hopefully unobtrusive way. I'm delighted (and slightly emotional to be honest) to be able to make this my last post and move on. Today's ride feels like a fitting full-stop to this chapter in my life.

For those reading this blog because they or someone close to them face the same proctocolectomy / Ileul Pouch procedure I can honestly say (despite all the problems I incurred and the physical and emotional scars I bear) that I do not for one moment regret the decision to have the op and it has changed my life for the better.



Wednesday, 16 February 2011

Living Life :Free (8 months on)

Thought I should update the blog as its been a while and a few people have asked how I'm getting on.

Simple answer?  All is going very well.  I'm currently coming to the end of a 2 week break in Lanzarote, my first proper :free holiday.

I've been pondering the correct syntax for describing my new status.  Wondered about P.C. (Post Colon) but I've decided to plump for ":free" -- rather like the kind of code-writer, Java-script feel to it.

So, my :free life.

Although the nights are still a little disturbed I'm basically back to normal (and am assured the nights will get better, as they slowly are doing). I'm working full-time again, whilst trying to keep those promises-made-to-self  in the darker moments to not let work 'take over' from living life to the full.

Current break in Lanzarote has seen me able to do some proper bike-riding at last.  260 windy hilly miles, albeit spread over nearly 2 weeks and at a very slow pace.  Plenty of people around me reminding me to take it easy, pace myself back to fitness, steady miles, build the base ... all good advice and I am taking it. Speed will come later. Probably. Worth remembering too that I was never a big cyclist; riding my bike properly again has simply become a psychologically important hurdle, a way of proving to myself that I have properly recovered.

So that's it I guess.  For anybody reading this facing similar surgery I can honestly say, despite the significant complications I suffered, I'm delighted I had the op.  I am no longer dependent on steroids to function and I am able to enjoy getting fitter and stronger every day (rather than slowly getting worse, as I was).

* "Introspective, Cliche-ridden Bit" Alert *
I guess in a strange way I am lucky to have come through two life-changing health problems (Lymphoma/Chemotherapy and Colitis/Colonectomy) and be fighting fit the other side of it all.  I've had plenty (possibly too much) time to contemplate my life and am lucky enough to have the opportunity to keep those promises-made-to-self when I have been down.  So carpe diem, smell the roses, live life to the full, enjoy life's little pleasures, don't sweat the small stuff .... and never, ever forget that (like me) Life's Too Short. Life's too short for bitterness, too short for loyalty cards, too short to 'play it safe', too short for worrying, too short to count the change, too short for pretty much everything except just getting on and doing stuff, now.

On which note, I'm off to do some stuff. Now.


Thursday, 25 November 2010

Day 163: Existential Angst

I've not been posting here for a while and that is a good sign; I generally turn to this blog now only when I have "issues"  to work through ("issues" being a word that even when spoken out loud must be accompanied by bunny-ears quotation marks).

So where have we got to?  It's nearly six months since my initial operation, just over 5 weeks since the final operation and all is going well. 

I no longer have a colon so I can be sure I will never suffer from ulcerative colitis again; that's a certainty.

I have been re-plumbed internally so I no longer sport a colostomy bag. Whilst I rather like the idea of "sporting" a colostomy bag (of wearing it proudly, in an ostentatious manner), I am of course delighted to be rid of it.

I have some reasonably dramatic external stomach scarring (made worst by the infections I incurrred) but I can convince myself these have an edgy "gangsta" look to them.  Indeed, with a little story-telling brio I think I could convince a gullible audience that these wounds were incurred whilst rescuing a distressed maiden from knife wielding youths. "No, please, don't call me a hero. I was doing what any recklessly brave man with no regard for his personal safety would have done ...".

The long-term lifestyle impacts of life without a colon for me will become clearer over the next 6 - 12 months as things settle down and my body adjusts. At the moment the main issue is a need to get up 3 or 4 times a night to go to the loo which is kind of wearing. Other than that its not too bad; my scars get sore and I go to the loo more frequently than before, but I have "control" and feel I can start to get on with my life again.

My biggest frustration is finding the energy and strength to regain fitness and get myself working properly again.  I've clearly been severely weakened by this whole experience and am desperately keen to prove to myself that I can get back to being a fully active, fit, strong, healthy and productive person.

I nearly have my weight back (I lost two stone after first op, recovered it, then lost a stone after second op, which I have nearly recovered) and feel I should be able to exercise soon.  I've had a bad cold for the last week but prior to that I had managed two outings on the bike and think I might be up for something gentle this weekend.

I'm desperate to get back to work properly; so much to do and so frustrated at my weariness and inability to just 'buck up' and get stuff done.  I made it in to work four days last week but had to stop and sleep in my car on the way in and the way home every day.  That said, I have got over the worst of this cold now and have found the energy to write this post so that shows my brain is kicking back in to life.

So what?  I guess writing this has helped me realise how far I have come, how I just need to show a little patience as I enter what is hopefully the last mile of this marathon.  Its less than six months since my initial operation; I was seriously ill for a while there and am frankly lucky to be here at all.

I've always believed that what doesn't kill you makes you stronger. Well I'm still here, so I must be stronger.

So, time to get on with my life then. Bring it on!

Thursday, 21 October 2010

Final Op Done

Well, I had the final op on Tuesday and all has gone smoothly; the bag has gone, my internal plumbing is working and the op scar is small and healing well.

Should be out of hospital for the weekend and can get on with the rest of my life .... hoo-bloody-rah!

Monday, 4 October 2010

Fittter, happier, more productive ...

Fitter, happier, more productive,
not drinking too much,
regular exercise at the gym
(3 days a week),
getting on better with your associate employee contemporaries ,
at ease,
eating well

[Lyrics by Radiohead]

Well, its been a long time since I posted to this blog; that's a good sign.

Have just spent a week in the beautiful North West (Achiltibuie, Lochinver) enjoying decent walks (Sandwood Bay), small hill climbs (Stac Pollaidh) and a day of cycling (35 miles, 3,700 ft climbing).  Making rapid progress now and feeling, well, "fitter, heathier, more productive".  Photographic proof for those who doubt that the sun can shine in Scotland in late September ...

Have the next op pencilled in for October the 18th (today was my first day without a dressing on the wound. yay.).  That involves getting 'plumbed back in', losing the bag and returning to some semblance of normality.  Hard to put in to words quite how enthusiastic I am about this all being over. Of course some nervousness about going back in after the traumas of last time, but more excited about the idea of this being well and truly all over by Christmas!

Saturday, 7 August 2010

Life is Sweet

Day 53 ... and I've had a good few days.

Just been for a pleasant stroll, the sun is out and life feels good. Some signs of weight gain and definitely improving energy levels. Still have some down days (lots of sleeping mainly) but these are fewer and farther between.

Nothing intersting or insightful to add so will leave it there; thanks again to all of those who have visited, emailed and/or offered support.

Tuesday, 27 July 2010

Progress at Last

Day 43

Well I've passed my '40 days and 40 nights' since the op and I am still wandering in the wilderness; that said although I've lost a lot of weight strictly speaking I haven't been fasting (so I'd better drop the "me versus Jesus" analogy).

The good news is that after my litany of set-backs and disappointments I do seem to be on a proper recovery track now. Wound is showing signs of healing (not before time) and a daily District Nurse visit is pretty much enough to keep up wih my need for dressing changes. In the last 2 days I've started to feel improved energy levels and more of an appetite -- I think my weight loss has stopped now (at a rather emaciated 9 stone 9lbs I'm kind of hoping so).

I managed a decent 30 minute walk today and I'm still feeling OK an hour later so I can imagine starting to get some proper exercise within the next few weeks.

I guess that's it for now; it makes a nice change not to have bad news to post here.

Wednesday, 21 July 2010

Homeward Bound

OK, just a quick positive update today.

Wound healing seems to be progressing well. I get my last dose of iv antibiotics at 2pm today and then I lose the cannula from the back of my hand. Losing the cannula is a source of disproportionate joy for me; amazing how much I have come to resent that little tube and its hinderance of my typing, the way it catches on bed sheets, the difficulty it causes in washing properly ... and the fact that it just marks me out as 'a patient'.

This morning was the first I can remember since the op where my first thought on waking wasn't "ouch, where are my painkillers".

I have had too many false dawns to get over-excited or to start counting any chickens (one of my favourite past-times is chicken counting; its a traditional Scottish thing), but ... this feels like I am genuinely getting better at last.

My 'I can't do anything but watch telly' period of recuperation has co-incided with the World Cup, Wimbledon, The Open and the Tour de France. Now the Tour de France is drawing to a close, my recovery is suddenly accelerating. Coincidence. Honestly. How dare you doubt me? :o)

Saturday, 17 July 2010

Now That's Better

At last, a positive Blog post. With any luck, my 'misery memoirs' style posts are now over and I can just start ticking off the steps as I recover fully.

They are keeping me on iv antibiotics until Wednesday but I already feel transformed. I'm still on pain killers of course but I am walking more easily than I have since the op and have some semblance of an appetite.

This has been an unashamedly self-obsessed blog; indeed that is kind of the point of writing it, to purge myself of all the self pity. But as I surface from the worst of this experience I want to take a litte time out to thank those around me who have helped in so many ways.

I won't attempt to name check all those who have visited, sent gifts and cards, texted, tweeted and emailed -- but to all of you a sincere Thank You; it really does make a difference having threads of contact with the real world and knowing I am not forgotten.

Again, I don't want to start name-checking, but the nursing staff here at the Murrayfield (as well as the Stoma care team and the District Nurses) have all earnt my deepest respect and gratitude. The level of patience, sympathy, empathy and emotional support shown has genuinely touched me at times ... and the good humour has helped make the difficult nights and long days a lot easier to deal with.

Lastly but certainly not leastly there's one person who I will name: the remarkable Jane (my partner, for those who don't know her). The stresses for a partner/carer in situations like and the strains that result should not be underestimated [Explanatary note for my classicist friends reading this who tend to treat 'stress' and 'strain' as synonymous: stress = the force applied, strain = the resultant deformation]. Jane has put in an enormous amout of time and effort to make sure I have everything I could possibly need while in hospital, caring for me while I have been at home (including gory middle of the night dressing changes), generally waiting on me hand and foot and at one stage literally mopping my fevered brow. I genuinely don't know how I would have coped without her, particularly when I have reached my emotional low points. She is clearly physically exhausted and emotionally drained by this whole experience: I'm looking forward to being well enough to start repaying the massive debt I owe her.

Right, I have to go now: that Tour de France doesn't watch itself.

Friday, 16 July 2010

Oooh, You Are Awful

So, here I am back in hospital.

I ended up seeing my Consultant on Wednesday evening by which time I could hardly walk and was in tears because of the the pain (and in truth probably because of the psychological trauma of being so weak and realising things were getting worse).

He looked at my wound and delared it really was an 'awful' infection. He made a couple of minor incisions to be able to probe around and assess the depth of the infection cavities and had me checked back in to hospital. To add insult to injury I had to be wheelchaired back out to the car, despite my protestations that I really would rather shuffle under my own power. They were probably right.

By the time I was in my hosital bed I could hardly keep my eyes open or communicate lucidly. I checked my charts today amd my 'resting' pulse was over 100 and my temperature 102 (sounds better in Fahrenheit, but apparently 104 is when they start to realy worry). So I lay in bed with a fan trained on me and Jane literally mopping my fevered brow (a task she has been doing metaphorically for a long time now).

The night wasn't too bad although my dressings were changed 4 times betwen midnight and 6am. At one point I had three bags attached to various parts of my abdomen. At 2:00 am my nurse called in reinforcements and a nurse stood on either side of me as they removed all dressings and my stoma bag to get a fresh start. Of course, once all the dressing were off I started erupting from all three wound holes and my stoma simultaneously and the nurses were frantically swabbing and wiping to try and get me clean enough to redress everything. It was one of those moments when you really do have to be able to laugh and thankfully we all managed to see the funny side.

CT scans yesteday were good news -- it appears there are no other infection pockets so what we can see is what we have to deal with (otherwise they may have had to open me up again). So now its iv antibiotics and fluids (I had not been able to eat or drink sufficiently on Wednesday as I felt so nauseous) painkillers and plenty of rest. A minimum five days in hopsital now to get the iv antibiotics course run.

So here we go again: yesterday evening I got out of bed here for the first time to get to the bathroom and I was as weak and unstable as new-born foal. So the next challenge is a corridor walk; hopefully today.

Rather a dull post I'm afraid -- I'm lacking any wit or wry humour today; hopefully a temporary condition.

Wednesday, 14 July 2010

Enough Already

I promised my next post would be a more positive one. I'm not sure I am going to able to deliver on that promise I'm afraid; so I'll keep this brief.

Saturday morning I woke in a lot of pain and asked Jane to call the hospital. We went in, saw the consultant who expressed his 'disappointment' at how the wound had developed. They took the decision to fit a bag over the open area of the wound to collect the 'seepage' and let me back home.

Fast forward some dull, tired and sore days to today, Wednesday. I have developed another infection site on the wound which is leaking a lot of puss -- having watched this develop for a few days, the District Nurse this morning decided to get a GP to come and have a look at me (appparently I was white as a sheet, certainly completely physically exhausted).

GP's view is that I should probably go back in to hospital as worried the infection is 'tracking' around my abdomen and thinks I may need to be opened up yet again to have the infection site fully cleaned out. I am not enthusiastic about the idea of being opened up again (somewhat of an understatement) so am sitting here waiting to hear from the Consultant and agree a way forward.

This really is a bind.

Friday, 9 July 2010

Moving Backwards?

A tough couple of days; determined not to let this get on top of me but it really is starting to wear me down.

I have to remind myself that 'Big Picture', all is OK. The problem is my wound has turned really nasty. The more squeamish of you may not to read the rest of this post.

I had two holes in my wound about 5p piece sized and maybe three inches apart. The wound has now opened-up between these two holes to leave me with a gaping hole maybe 3.5 inches long and an inch wide ... and a lot of foul smelling fluid and puss pours out pretty continuously. It is, as it sounds, deeply unpleasant. It does explain why yesterday was such a painful day and had me taking all the pain-killers I am allowed.

The District Nurse described the output from the wound as 'volcanic' today and for the first time she mentioned concern about MRSA. They took a swab a week ago and that has just come back clear so hopefully its 'just an infection' rather than something more sinister.

I started a fresh course of antibiotics yesterday and am told that within 2-3 days the effect should be noticeable. The District Nurse assures me the worst should be over now I have 'erupted'. She suggested that I must be regretting having the operation now. For the first time: yes, damn it, I am regretting it. It wasn't meant to be as bad as this -- of all the things to worry about the surgical incision wound itself was not really on my list.

So there you go. Feeling sorry for myself, which is never a good sign. Have to remind myself that 'you can only do what you can do', that 'we are where we are' and other such glib truisms. But I guess these self-evident truths are, well, true. Self evidently. So I am where I am and I can only do what I can do.

Time to buck up and get on with it I guess. My next post will be more upbeat I promise.

Wednesday, 7 July 2010

Wound up by my wound

First things first; I have had a few visitors who have read this Blog and they all say I look better than they would expect from these Posts -- just wanted to share that in case my tendency towards the melodramatic has overstated quite how ill I am. To be clear: I'm definitely getting better!

So where am I now?

Good news is my daily walk is still extending. I reckon I am managing over 1km now. I'm sad enough to have decided to wear my GPS tomorrow so I can get some solid data *puts on Mel Gibson 'Scottish' accent* "you may take my colon, but you will never take my love of data".

Frustration is the slow progress of my wound healing. I need to have the dressing changed a few times a day and it can be pretty uncomfortable as fluid builds up and seeps out (sorry). Consultant saw me yesterday and cut the wound to help release the fluid so I feel like the healing process is going backwards, but they assure me you heal from the inside out so although it doesn't look great, I must be getting bettter.

My concentration levels are pretty poor. I've been trying to do odd bits of work but I don't trust myself with anything that requires proper brain activity. I was expecting to read a lot during this time, but again so far I don't have the concentration required to read more than a page or two.

But it's all good; I was warned it would take time to recover and that was before all the complications and the second op. My weight has stabilised; was hoping to have put some weight on by now but thinking positively I have stopped losing weight and energy levels are improving.

Enough for now.

Monday, 5 July 2010

Coming to terms with recuperation

OK, I'm getting pretty frustrated now.

I have to remind myself that I have only been out of hospital for 5 days, but I really was expecting to be making faster progress than this.

Irritatingly the combination of 'Big Op'+Sepsis+'Second Op'+steroids is not a good one for wound healing. So although I have stopped weeping, my wound has not. This means fluid build up, soreness, dressing changes ... and most frustratingly of all I have to remain pretty sedentary. I'm still managing to extend my daily walk (must be up to 300 metres now. Yeah, I know) but that activity is pretty uncomfortable and makes my wound worse. It's a tricky balancing act as I need to allow myself to heal but be active to try and rebuild strength and get some muscle back on my legs (I was never a big thighed cyclist but I can now get my hands to join around the tops of my thighs!).

The community nurse was round today to look at my wound. She's not been the first person to tell me an operation like this takes 12 months to get over; but this might be the first time I've allowed myself to believe it.

Still; its early days and every day does get better.

Lounging around all day feeling sorry for myself means a lot of daytime TV; and that means daytime TV Ads. Today I have just discovered that I could borrow money from for only 2278% APR. I'm not making that APR figure up, it's plastered across the screen. That means if you borrowed £1,500 from them, in a year you would pay £34,170 interest. I wonder how it feels to know you are making your living by exploiting the desperate poor? I'm not a judgemental person ... but anybody associated with that business is going straight to Hell.

There, I feel better already.

Friday, 2 July 2010

The Disappearing Man

So I'm home, delighted to be out of hospital after 17 days.

It makes a big difference to be sleeping in my own bed and eating a variety of food. I'm still pretty uncomfortable and incredibly weary; the 'double whammy' of the two ops has definitely taken its toll.

I weighed myself this morning on my own scales ... it turns out I have now lost 14kg (over 2 stone). I wasn't exactly a big lump before the op: I'm now 62.5kg -- that's under 10 stone for f**ks sake!

Which I guess explains why I get so fatigued just moving about. So my task now is simple: eat. Try and be active, make myself get up and walk (managed a 100 yards or so tody) and eat. My wound is sore and I have little apppetite but how hard can it be to eat? So smoked salmon, porridge, nutrition drinks (horrible), crisps, biscuits, bananas, fish ... just have to make myself keep eating.

I'm frustrated that I can't exercise ... but that will come. Patience wouldn't appear high in a listing of my virtues but I am going to have to find some.

Now to try and get the energy together for a shower and dressing change.

Wednesday, 30 June 2010

Positive Thinking

Well, a dull day today sitting on drip and having all input/output measured. Was hopeful of gettting out this evening but Consultant is keen to be sure my fluid balance is stabilised; given the grief I have had over the last 2 weeks I'm not going to argue.

Challenge now is mainly a mental one; to balance the need not to overdo it with the risk of becoming a sloth. This evening I did my walk to the bench + round the tree. It should really be as easy as that. Do a little more each day, celebrate the little victories, just enjoy the fresh air and freedom ... and fitness will come.

Plan is to get out now tomorrow evening -- I find myself avoiding the use of the term 'discharge' for some reason.

Tuesday, 29 June 2010

Groundhog Day

Disappointed to be writing this still in hospital. Headline news is all OK, just frustrating.

Felt absolutely drained all morning, slept and slept, felt queasy. Forced myself up and managed to half pack before flaking out. Jane turned up and finished my packing and we were in theory ready to go; but I felt terrible, really struggling to get up and walk.

Cue flurry of medical staff and before you could say 'ileoanal anastamosis' I was back in bed and on a drip with fresh bloods taken. The nature of my Stoma Output (details deleted in the interests of decency) has been such that I had become dehydrated and that was what was making me feel so ill.

This whole rigmarole would not be complete without another element of stress and panic though; and so it proved. About an hour later they returned to take my bloods again because of a 'freak result' on my bloods around high potassiumm levels. It was explained this can happen if the blood cells become damaged whilst taking the blood and not to worry. The phlebotomist then casually asked if I'd ever had any kidney problems. "Not before you helped me inflate my bladder to the size of a dirigible" I thought.

Second bloods came back fine (other than signs of dehydration) and I'm sitting here now feeling like a human being again and hoping this is just one more night in and they will let me go tomorrow.

Hey ho.

Monday, 28 June 2010

Out of Hospital Tomorrow

A very brief post today.

All is good, I am simply exhausted. My biggest challenge at the moment is to eat. I have no appetite but clearly need calories. The advice is great: eat little and often, eat crisps, biscuits, ice cream, drink coke ... doesn't really matter what it is as long as I get food in me. Fill your boots! Trouble is I just feel grotty and (I am not joking here) eating a digestive biscuit tires me out and I need a kip.

I did my 'big walk' today out to the bench (maybe 50 Yards?); rested and then came back to bed. Was so out of breath I could hardly talk and needed to sleep afterwards. Have felt less tired after a 50 mile bike ride.

Still, the lower you start, the easier it is to make progress. Let's see what tomorrow brings.

Saturday, 26 June 2010

The Emergency Op

I have pieced together what happened over these few days largely from talking to those who were looking after me at the time.

Monday, Tuesday, Wednesday
On the Monday night I started experiencing severe abdomninal pain and my memory blanks out for large periods after this point.

The Sister who attended me that night (who had also seen me through post-op HDU first time round ) came to see me a few days later. "God I'm glad to see you looking OK", she said "that was quite a night we went through with you". I just stared back at her blankly; I had no recollection at all of seeing her on the Monday night. Apparently as my distress increased through the night they had put me on iv morphine but could see the pain was still getting worse.

I vaguely remember being prodded and manipulated on Tuesday morning and the word 'sepsis' being bandied about. Somewhere in the back of my mind I was thinking "OK: there's an infection, they'll put me on antibiotics and that should sort it".

Now of course I have access to Google ...
  • "Sepsis is a life-threatening illness. Your body's response to a bacterial infection usually causes it. Your immune system goes into overdrive, overwhelming normal processes in your blood. The result is that small blood clots form, blocking blood flow to vital organs. This can lead to organ failure. One third of people who get sepsis die from it"
Suffice to day; under any circumstances, sepsis is very bad news.

They CT-Scannned me and decided to operate again; I remember being wheeled around and signing the consent form and then it was back in to surgery.

The post-op recuperation that followed was the longest night of my life. A couple of things made what was a bad situation worse than it needed to be
  • I was not given the iv-paracetemol I should have been (because the agency nurse caring for me didn't read my notes properly) and I was limited to pca morphine. The agency nurse didn't call in a doctor or anaesthetist despite my clear distress; from later conversation it is clear he should have
  • Presumably for reasons of expediency they did not catheterise me for the op this time round.  I struggled to pass water through the night -- I guess because of the pain I couldn't relax enough to be able to
Add to that an iv-drip that would alarm every 10 minutes (I see the nurse wrote in my notes how annoying that was!) and my night of pain and sleepless misery was complete.

During that night I was in and out of consciousness. I thought at one point that several days had passed when in fact it had been a few minutes; I lost all track of time and could make little sense of my environment; I was having mildly hallucinatory conversations with people who weren't there. But mainly I just hurt. A lot.

In the morning the nurses handed over and fortunately I now had a nurse who had cared for me before. I got stroppy: "This just isn't right" I said, "we're not making any progress, I am not getting better, the treatment isn't working ... we need to be doing something that's going to make this improve".

I asked why I had not been given anything other than the pca morphine and fortunately I was compos mentis enough to ask about the iv paracetemol. The nurse looked at my notes and I saw from her reaction that a mistake had been made; she immediately hooked me some up and within 15 minutes I felt a reduction in the pain levels. At last I believed things were going to get better.

Passing water was now a real issue. They theorised that my bladder may be overly full (this made sense to me and was how I felt) but when they used the ultrasound machine that measures bladder content it read only 100ml. This was depressing. After some debate they catheterised me (as I myself said, "why not?") and crikey was my bladder full. Immediate release was measured at 1.7 litres; my consultant still refuses to believe it (the human bladder apparently has a capacity of around 500-600ml).

The worst was now passed. I was still very sore and well doped up; they had left two drains in my stomach this time to monitor the wound site more extensively and these were very uncomfortable. But at least now I felt like I was getting better again instead of worse.

The consultant tells me that during the op they found two large infection sites inside me (I'll spare you the full gory details here) which they were able to flush out and I have been taking industrial strength antibiotics since.

Thursday / Friday
These days were all about recovery, sleeping, dealing with pain ... and emotionally unravelling.

I think it was some combination of the trauma from the pain I had suffered combined with the realisation (from seeing the relief in the nurses' faces as much as anything else) of 'just how close that was'. So a lot of tears were shed, I turned into an emotional jelly for a couple of days.

There was a real Groundhog Day feel about these days. First time round I had handled the post-op irritations pretty well; this time I couldn't help noticing how much weaker I was than before and was continually irritated that "'I've already done this once before".

As I sit writing this on Saturday evening my drains have been removed and I have been able to take some faltering steps around my room. The remaining worry is apparently whether my bladder has been damaged; the catheter is out tonight and so by tomorrow morning hopefully I will know that all is functioning normally.

I am looking and feeling malnourished: the muscle wastage particularly around my legs is distressing to see. Still, that gives me a nice focus and challenge for the coming months -- all going well tomorrow is my first step on the ladder back to full heath and fitness

Friday, 25 June 2010

The Initial Operation

I'm writing this Blog as much for my own good as anything else (it helps me process what has happened/is happening) and I publish to prevent me having to bore people with my stories (if they are curious, I can point them here) and to psychologically ghettoise this part of my life because I don't want this operation to be what defines me.

If it helps others impacted by similar circumstances then all the better; I know personally I found web researching actual patients blogs and testimonies really helped me in advance of my op.

Its in the context of others reading this who may be contemplating similar surgery that I want to make a very clear HEALTH WARNING: all did not go smoothly for me and I want to share that; but please don't let the negatives of my experience affect your personal judgements. I would hate to think that someone delayed or deferred treatment because they were put off by what they read here -- my over-riding feeling (writing this 10 days after the initial op) is relief that I did get the operation done.

Writing this 10 days after the intial op so will break-down the journey as best I remember.

Tuesday 15th June
I was admitted at 9am and went in to surgery at 3pm. This is, there are no two ways about it, a major surgery. The sheer mass of stuff being removed and the extensiveness of where they need to reach is quite mind boggling.

The surgery was expected to be about 3 hours but when they got me open I was more delicate inside than expected (all the more reason for doing this surgery now of course, so actually good news in a strange way) and the surgeon tells me had to take it slowly (lots of delicate tissue, blleeding etc).

From the discussion with the surgeon I guess it's all very 'organic' in there compared to how my rather organised brain would like things to be -- they are snipping and releasing things all over the place to get things free ... and the formation of the pouch must be a very fiddly bit of needlework.

Maybe in part because longer than expected, maybe because of my unexpectedly delicate internal state, maybe just unlucky ... but in recovery there were some major pain 'issues'. I recall a lot os swearing and apologising but am assurrred it was mainly just moaning. It took a while to get me stabilised such that I was over 6 hours in theatre in the end.
Next c.24 hours in HDU (High Dependency Unit) are a little hazy but Jane was there for some of that and I have since spoken at length with the Sister who cared for me. The morphine / paracetemol etc. wasn't keeping pace with the pain and my oxygen absorbtion was falling so they had to withdraw the morphine ... and the anaesthetist was called. After some debate I was given an additional muscle relaxant (potentially a bad idea because of being on steroids) and that had an almost instant beneficial impact and helped me get through the night.

Wednesday 16th June - Monday 21st June
Things were then largey as expected and straightforward. I got out of HDU and back to my room to begin recuperation. Oxygen, drips as you would expect plus urine catheter and a drain taking fluid directly from the Stoma site into a bottle (so they can observe the fluids being produced and by implication judge the healing process).

The main incision wound is pretty agricultural -- a vertical slice running down from just above my belly button for 8-10 inches and stapled together with (and I'm pretty sure about this) standard 20mm galvanised fencing staples. OK, maybe they are surgical staples; about 25 of them at last count.

The Stoma just is what it is. It doesn't really bother me as I know it is a transitional solution; but if I later discovered that I woud have to deal with a Stoma long term I know it would be fine. Like most things in life, you learn to adapt -- I know I would still be able to go on long bike rides and hill walks, I would be able to run and swim, I would be able to sit and enjoy the company of friends. And yes, I would be able to have intimate pleasures too.

By Sunday I was on top form: all tubes were out, I was mobile, washing myself and wondering why I would need to be in for 10 days.

Then on Monday evening things started to go rapidly downhill and it became clear something was wrong (even telling myself to 'buck-up' didnt' work, and it normally does). I was suffering increasing pain and soreness all around my stoma site, across my stomach, in to my groin. From here I have really had to piece together what happened from others and my own very hzy memories: next blog post!

The Planned Operation

So I am currently undergoing surgery to resolve the Colitis issue once and for all: the following is my best attempt at a layman's terms summary with 'the right medical words' used where I can remember them (and because I find entymology interesting in its own right). If I find time I will try and hunt down some useful links in particular for illustrations which are reallly helpful if you start as ignorant about biology as I did.

  • The purpose of the surgery is to remove my colon (the large intestine) and rectum ie. everything from the end of my small intestine down to my bum. This is about a metre long and is the last bit that mainly extracts fluid from your faeces and provides a storage chamber until you are 'ready to go'. The technical term for this is a proctocolectomy: procto = rectum as in proctologist + colon + ectomy = surgical removal as in, well, all those -ectomies)
  • The Good News: this definititely works! In fact, it definitivley works: Ulcerative Colitis is defined as a disease of the colon; you can't have a diseased 'something you don't have'
  • The Bad News: those attentive kids at the front will have already recognised that the rectum and colon serve some pretty useful functions. Fortunately a rather nifty surgical process has been developed whereby they take the top part of the bit that's left (the end of the small intestine; the ileum) and use it to construct a replacement 'pouch' inside you and connect this to your bum to 'plumb you back in'. The technical terms for this are an ileul pouch (a pouch formed from the tail end of the ileum) and an ileoanal anastomosis (joining the ileum and the anus, 'anastomisis' = connection of two structures)
  • The alternative to this ileul pouch solution is also commonly used (including in my case) as a transitional procedure to allow the pouch to heal undisturbed; a Stoma and bag. [Stoma from the Greek, 'Stomata' = mouth, which kind of makes sense if you think about it]. This is generally achieved via an ileostomy as the Stoma is created from the Ileum; when used transitionally as in my case then they use a loop ileostomy (as a loop rather than the end of the ileum is bought to the surface because it will be 'replumbed in' in a few months). I think most people have a vague mental image of what this means -- the ileum is brought to the surface through your skin at the abdomen (below and to the side of your belly button) and you discharge directly into a bag stuck to your side which you manually empty and change. I think most people are intuitively repulsed by this idea (and I include myself in that, initially); for me it is a transitional issue only so I won't attempt a full defense of the practicalities of dealing with this, suffice to say for anybody who faces this as the end-state ... like so many things in life, when it comes down to it its not actually that bad and technology and care techniques have moved on a lot; I am sure I would be a more roundedly functioning individual sans-colon but avec-pouch than with Chronic Ulcerative Colitis

So in my case I am undergoing surgery intially for the removal of colon (Proctocoloectomy) formation of pouch (ileal pouch) and a temporary external bag (loop ileostomy). In a few months I should be back in to get the loop ileostomy reversed and effectively be plumbed back in. I won't have fully 'normal' bowel function after all of that but I will be a far healthier person than I have been and my quality of life should be transformed. Apart from a big old operation scar, I should be externally 'normal' and able to resume my outdoor / sporting / fitness activities that most of you know I enjoy.

The Medical Background

About Me
I am a very active 43 year old man.  I am an enthusiastic but untalented road cyclist who will happily tap out 50 - 100 mile rides when in shape.  I ran the London marathon in 3:09 back in 2001 (which would have been the peak of my running activity); I enjoy running but have run less and less as my colitis has hampered me.  I enjoy hill-walking, being active, kite-surfing on sunny holidays .. that sort of thing.

My business life is entrepreneurial and therfore quite all consuming of my time and energy: I have founder/executive/shareholder responsibilities with two strong UK dot coms and and an exciting international cycle clothing brand business Endura

The History of My Disease
I have suffered from Ulcerative Colitis for over 10 years now. This is a poorly understood disease which causes deterioration of the colon specifically and health generally. It is a chronic condition (once you have it, it never leaves you) and its impact on lifestyle ranges from inconveniece and irritation at best (like having diarrhea) through to being almost completely dibilitated at worst (being impossible to get out of bed).  There are plenty of excellent websites that deal with the various issues associated with Colitis, its symptoms and ongoing treatments.  I will not attempt to replicate any of that stufff here and will happily add links if anybody has suggestions for moe generally intersting sites on UC.

Colitis (literally of course 'swelling of the colon'; -itis = swelling) diagnosis was a blessing in disguise for me because as a chance side-effect of the ongoing monitoring non-Hodgkins Lymphoma was discovered and successfully treated by chemotherapy back in 2002. That coincidence is, as far as I am aware, the only link between my previous cancer and this treatment.

The standard ongoing treatment for colitis is to 'deal with it': manage it through careful diet and lifestyle and various medications. Some of these medications are not appropriate for me because of my previous cancer experience; others have proven to not be particularly helpful for me. Everyone's experience with Colitis differs so anybody reading this who is affected by the disease -- please do not assume that what I am going through is inevitable for a Colitis suffer (and by the way, if what I am dealing with is the worst case scenario, it's really not that bad).

The one medication that has consitently worked for me is Prednisolone (a corticosteroid). Unfortunately, long-term usage of these sorts of steroids carry their own complications; put bluntly they simply 'age you faster' -- bone density deterioration being one of the most directly measurable effects which I am already experiencing -- and there are well recorded 'mood swings' and general tetchiness 'issues' which make me hard(er) to be around. Bets are being placed on which of the less endearing elements of my current personality can be attributed to steroids; we will find out soon

As long as Prednisolone was a way of managing flare-ups it was considered an acceptable price to pay; unfortunately for me I had become dependent on Prednisolone to function at all (not taking prednisolone meant being very ill; bed ridden with toxic shock symptoms). Constant use of steroids such as these is 'considered unaccceptable' by those that should know; for what it's worth and based the demonstrable effect they were having on me, I agree

Another common reason for resorting to surgical solutions for Colitis is that it causes an increased colon cancer risk in some cases (although the nature of my Colitis meant this was not a major factor in my decision process).

So it is within this context that my decision to have surgery undertaken was made

My Emotional Ghetto

I decided to create this blog because I realised I was spending a lot of time communicating what was going on to friends and interested aquaintances who had asked to be kept up to date.  I like to think I am a communicatively open person and from my own web-research in advance of my op I recognise the value that can be found in reading the realities of others' experiences.  So given this is an ongoing process with plenty of updates to come, the Blog seemed the ideal form.

I've also realised that writing about my experiences is extremely helpful for me psychologically as it helps me process and download everything that is happening, the decisions I am taking and, well, how I 'get my head around' what is going on.

Finally I think there is a risk of becoming overly-introspective and self-obessessed on this stuff; a risk that I become defined by this rather than this being a thing I deal with.  By ghettoising my colon surgey experiences here I can hopefully capture the benefits of talking about it and sharing info with those who are interested without becoming a bore on this topic in the rest of my life.