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.