13. There was an untruth in the last post.

When I quoted the surgeon on Wed as having said "it couldn't have gone any better", well in hindsight this should probably have read "we think it went as well as can be expected, but there is a chance you have a hernia already..." Which would have at least to some degree prepared me for the events that have transpired over the last few days.

Firstly thanks to my immediate family and friends who have supported me through my 2nd (emergency) operation which happened yesterday. I will not go into the great detail here, but in summary, it turned out the blood supply to my first Stoma was restricted and it was much darker (purple) than expected. This was caused by a herniated section of small intestine which had kinked like when one folds a hosepipe to cut off the flow. The upshot was that, when the gut got back into action, it would only pass after significant pressure build up. This has made the 3 days since surgery absolute agony, nearly unbearable at times. My mum said that I probably know the type of pain women have in childbirth! I'll not disagree with that assessment.

Hopefully, the 2nd surgery procedure has been successful, and the new Stoma looks nice and pink.

Thanks again,

Dave

12. Writing with one eye closed

Purely because analgesics I'm on make me unable to focus with both eyes!

Well just a very short message to say that in the words of the surgeon "it couldn't have gone any better".

Feeling very tired but comfortable here in my cocoon and listening to jazz.

Looking forward to eating something and getting up and about later this morning.

Bye for now

11. A very quick update pre-surgery

This is just a very quick update.

I am in ward 23 at the Western General overnight. I just met the surgeon and anesthetist and signed the consent form. I asked a few questions and I'll summarize the answers:

If all goes well in terms of carrying out the surgery by key-hole then I should only have minimal pain tomorrow, however I will have pain relief "on-tap".

I can have visitors tomorrow night but I'd ask that it's only immediate family, even then don't feel obliged to come in.

Tomorrow I may be in "high-dependency", which has actually been sold to me as a good thing since there is a higher nurse:patient ratio.

I can expect to eat a meal tomorrow night, but according to the surgeon "probably not hospital steak and chips", which would most likely be horse anyway so I'm not too bothered...

My scarring is expected to be minimal and I can be hopeful of a strong recovery since I'm feeling well right now.

Finally, just a massive thank-you for all the cards and messages today, it has been quite overwhelming but lovely.

See you on the other side.

10. Pre-admissions update

Well it is just a matter of days now until the op and I'm feeling pretty good about it in general. Every so often I do get a few "pre-match nerves" but I suppose this is only to be expected. I've been really touched by the number of people who have written to me with their kind messages of support, thank-you.

Good news

Earlier this week my wife and I attended my pre-admissions appointment and also met with the stoma nurse. The former being to basically fill out a questionnaire to ascertain if there's any reason not to go ahead with surgery and the latter mainly to "get sited" for my stoma.

Thankfully both appointments went very well and I will have surgery on the planned date, Wed 20th Feb, and there are a couple of bonuses that I wasn't expecting 1) I won't have to do any bowel prep (yippee!) and 2) the procedure is around 3 hours rather than 6-8 hours as I'd read. I will have to check-in to hospital on Tues afternoon where, because of my previous medical problems, they'll dose me up with heparin (a blood thinner). I was told this would not normally be the case, most people just turn up on the day. I'm scheduled for the first appointment of the day at around 08:30 although this is pending any emergency cases which may need to take priority.

Various things were explained to me such as the risks associated with anaesthesia and other potential but unlikely complications. The thing I latched onto most though was that I will be the proud owner of my own machine to self-administer morphine for a day or two to provide pain relief after surgery. This should be great fun, so look out for the blog post I write that day! Last time I was on morphine I, completely out of the blue and of character, asked my wife "did you know Beyoncé is having a baby?". It was true, she was.

I also mentioned being sited for my stoma; well I was expecting a little mark to be made on my abdomen, but it is not so little, it looks more like a butchered part of a Picasso sketch or something (picture below). But I suppose it is fit for purpose and it marks a location which avoids any folds when I sit down and lean forward, this should minimise the possibility of leaks. As I anticipated, though, I may have to invest in braces for wearing formal trousers due to the higher belt-line.

So folks, that's probably it from me for the next few days, I'll see you "on the other side".

9. Tic,Tic,Tic...

Several people have commented about how close the surgery date is now, and it is indeed just 10 days away. Note there are no 'tocs' in the title of this post; this is what I feel like right now, like time is going at half pace. For the past 4 nights in a row I have been awake at 2am - and I mean wide awake, just mulling things over in my head. Not just about the surgery, but also about things like what work I need to complete before going on sickness leave, and inane stuff like when the next bin collection is and composing new tunes in my head (only to forget them by daybreak). I don't feel unduly worried about the surgery, my dominant feeling is one of excitement, but I guess there's a whole cocktail of emotions shaking up in my subconscious which are making time drag so.

Feeling great...

For the past three years or so I've relied on a pretty potent drug ('Prednisolone') to provide relief from my Crohn's symptoms, it's the only thing that works to slow down my bowel movements and to help keep severe bowel cramps at bay. It is a 'corticosteroid' used to treat inflammatory diseases and it is very  much my "silver bullet". Unfortunately I cannot continue taking it indefinitely due to long term side effects such as 'osteoperosis' (bone weakening), 'glaucoma' (damage to eyes),  diabetes....the list goes on. Furthermore, the drug doens't actually curtail my Crohn's activity since my inflammatory markers remain high despite having times where I'm seemingly symptom free.

Being "symptom free" brings me drive and determination to try to live life to the full and for this I am very grateful to my old friend, Prednisolone. Right now it is quite strange though because I'm feeling very well, yet I know I need to go ahead with bowel surgery. Every now and then I wonder if I do really need to have the ileostomy, but the truth is that I have a dependency on a pretty nasty drug and despite the apparent well being it provides me, I must always be conscious that I'm actually not well. This is difficult to accept at times and I can appreciate how difficult it is for some people to overcome a drug dependency.

Fellow ostomates

The online Crohn's forum (www.crohnsforum.com) has become my most visited website over the last couple of months. This is an online community of people affected by Crohn's and to a lesser degree Ulcerative Colitis.  Whilst sharing my thoughts and experiences with my family and friends is really important to me, I can't recommend this forum highly enough to anyone with Crohn's since there is probably no bigger community of sufferers in the world, and if there is - it's certainly not as accessible as the online platform of the forum. I have subscribed to the stoma sub-forum and have gotten to hear from several others who have had ileostomies, and they have given me some great advice about the day-to-day issues/challenges. It's funny, many of my fellow ostomates have actually named their stoma! It seems like the little guys tend to have a "personality" and part of learning to deal with them is to understand the quirks they provide - and no two seem to be the same.

Plan leading up to surgery

So here's what I'll be up to over the next week and a half:

• Mon 11th Feb - pre-admissions appointment to check fitness for surgery followed by an appointment to see my stoma nurse.
• Mon 18th - final pre-surgery stoma nurse appointment to mark my abdomen with the stoma location
• Tues 19th - admission to hospital where the "clear out" process begins (having had colonoscopies, I know I'll hate that bit!)
• Wed 20th - surgery. My stoma will be born

Now I just have to think of a name for mine! If this week is anything to go by, I'll be awake for hours on end in the dead of the night so I'll probably have plenty opportunity to think it over...

“O Sleep, O Gentle Sleep, Natures Soft Nurse, How Have I Frightend Thee, That Thou No More Wilt Weigh my Eye-Lids Down And Steep My Senses In Forgetfulness?” ― William Shakespeare

8. Taking responsibility

Firstly I'd like to thank everyone who is reading the blog. Through the wonders of the analytical tools provided by Google I can see that so far I have approx. 25 regular readers, some of whom are probably my family and friends and others who are further afield (one nice lady contacted me from Texas, USA to wish me well for the surgery). I'd love to hear any suggestions/comments about the content so please do get in touch via the Contact Dave page. OK, housekeeping aside I'll get onto today's exciting topic  - taking responsibility.

Who cares?

In this context of medical problems, 'care' is expected from two different groups of people. In management speak these would probably be known as 'stakeholders':

• Those who have an emotional stake holding in my (one's) illness i.e. family and friends. They care because they want to protect me (one). 
• Those who are stakeholders because it is their job i.e. the medical profession. They have a 'care of duty'.

Why am I saying this? Well, I have to be conscious of this distinction in the definition of 'care'. More specifically, in the same way that I cannot expect 'medical care' from family and friends, I cannot expect the medical profession to 'care' like my family and friends do.

"Dave, where are you going with this?", I hear you asking.

How to get a medic to really 'care'

Think back to your school days; the teacher always favoured those who showed an interest in learning. OK they had a care of duty for all pupils, even trouble-makers like me, but they seemed to have an emotional strand to their caring for the aforementioned (we called these pupils 'swots' or 'suck-ups').

Well medics and teachers are alike in this respect. If doctors were machines, they'd invest an equal amount of effort in treating every patient; but doctors are not machines. Showing that you are really interested in battling/defeating/managing your illness is the most important thing you can convey to your consultant. Couple this with being polite and respectful to them and you will establish your position as one of their more favourable patients. An emotional (or at least pseudo-emotional) attachment can develop between you and the doc; they will really want to see you get better, and this maximises your chances of getting the best possible 'care'. So push your pride aside and become a swot.

My tips for getting the best out of your medics when you have a chronic illness (most also apply to short term problems too):

• Never forget that you need your medics. They hold the keys to a vast collection of resources.
• Always be polite and respectful to your medics. I find that thanking them for their time at the start and end of each appointment goes a long way to achieving this.
• Remember that (in all likelihood) your doctor doesn't suffer from your illness. Only you know what it is like living with your condition and you cannot expect the doctor, however well trained and experienced, to fully understand what it's like. You can only hope to convey things to them as best you can, and on that note...
• Keep a detailed diary of your symptoms. If you do then you will be 'top-of-the-class' since not many people do, but your doc will appreciate it. This can be anything from writing down a few words each day to, in my case, recording lots of data about my bowel movements and medication doses. You will forget what has happened since your last consultation and keeping a log is the only way to track the facts. If you don't then you will rely on your opinion of how you've been keeping and depending on your personality, you will either forget the really bad times (optimist) or dwell on them (pessimist). Your doctor needs facts, not opinions.
• Last but not least, try to learn about your condition. Do some research and gain a better understanding of what you are dealing with. Understand what treatment strategies are available and try to anticipate what might happen in future. Not only will your doc appreciate this but you will be better prepared for any eventualities.

Although the above points may look like you're pandering to the medic's wants, they are really geared towards taking responsibility for your condition. You will empower yourself to face it head-on. You will be able to have meaningful discussions with your consultant and, more importantly, you'll be better placed to think about how you feel about how your treatment is going. Don't just sit back and expect someone else, no matter how well trained they may be, to take charge of your body; it's not their job. Yes, they need to provide you with their advice but ultimately you will have to make decisions, and the more responsibility you take, the more empowered you'll be to take them.

"You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you." - Brian Tracy

7. The countdown begins

Did you notice the big black countdown timer to the right hand side of the blog? So my date for the operation has been set; 20th Feb 2013. I am quite happy about this since it is a month within the 12 week NHS target and it affords me three months of recovery time before I go on a wee holiday to Arran, one of my favourite Scottish islands.

Some gentle 'nudging'

I was beginning to wonder if I was ever going to receive a letter to confirm my op date; time seems to slow down when you want something to happen quickly! So I decided to phone the appointments department for general surgery at the hospital. After about 7 or 8 minutes and three call redirects I got through to the right person and they confirmed I was on the waiting list but no date set yet. At this point I was thinking that I might have been wasting my time, that I'd just have to wait for the 'machine' to go through its process. But I was pleasantly surprised when the girl on the other end of the line said she was personally going to chase this up and call me back to let me know when she'd spoken to the surgeon to confirm when he could perform my operation. "So will you call me back today?" I asked. "I'll try to speak to the surgeon today, but if I can't it might be a couple of days" she replied. I thanked her, but I have to say I didn't necessarily think she would deliver on her promise so I politely asked her name -  I find this sometimes helps to speed things along when dealing with medical administrative staff :-).

What I wasn't prepared for was to receive a return call from the kind young lady within 10 minutes! She confirmed to me that the procedure would be on 20th Feb, that I'd need to attend a pre-admissions appointment on 11th Feb and that I should expect to be in hospital for 5-7 days. She'd prepare a letter to confirm that would be in the post in due course. The relief was amazing, suddenly I wasn't wondering if I'd been forgotten about; the date was set and I could properly begin my planning. It just shows, a little nudge in the right direction can get things moving along.

So what's next?

Well I need to meet again with the stoma nurse to discuss various things including identifying the preferred location for my stoma. I have been seeking advice from some fellow ostomates recently via the Crohns forums and gotten some tips such as making sure it is far enough away from my belly button that the sticky part of the ostomy bag won't overlap (this would be a point where leakage and subsequent skin irritation could occur). I am also keen to make sure there is a proper 'spout' shape to it which also minimises the chances of skin irritation. I have bit of a decision regarding the clearance from my belt line; I'd like it to be above this but unfortunately not all trousers are at the same height. I've noticed that my more formal trousers sit higher than my jeans, so I think I'll want it sitting above my jeans belt line, but probably settle for wearing braces and a larger waist size for my more formal trousers.

After this will be a pre-admissions appointment on 11th Feb, which I think is a consultation to establish that I am fit enough to have surgery (I bloody well hope I am!). I don't see the point of this right now but I'm sure all will become clear.

Then I'll be admitted to hospital on 19th Feb and it will be no turning back. No doubt I will have to drink a gallon of 'Movi-prep' laxative solution to clear me out before the op. I have had 4 colonoscopies (camera up the rear end) but despite my level of experience, the Movi-prep stage never gets any better - actually it gets worse since I know just what it means (running to the toilet every 5-10 mins for hours on end whilst the gut literally washes clean). But it will be worth it.

I believe I'll be on the operating table on 20th Feb for something like 6-8 hours. It would normally take about 3 or 4 except that I will be having my large bowel removed 'laproscopically' (AKA by 'keyhole' surgery). This takes a bit longer but leaves only a couple of small scars rather than a 6-8 inch scar down the middle of my belly.

All in all I'm looking forward to having had the op, though I am a little apprehensive about the procedure itself. As I will be in hospital for 5-7 days I have been thinking about what I might do during this time (apart from writing a certain blog!). I have decided that I don't watch enough films, so I'll be loading some onto my wee tablet computer.

With a bit of luck I will have a reasonably quick recovery; who knows, I might even be able to play some golf on my holiday to Arran.

"I can't change the direction of the wind, but I can adjust my sails to get to my destination" - Jimmy Dean.