1 year later, I made it!

I'm 10 days shy of the anniversary of the first step of my j-pouch surgery. Its been a long and bumpy road but i'm pleased to report that i've finally started to feel like my old self. The strength in my voice has returned, I can spin my kids round in the garden, my diet is expanding ridiculously, I go to the toilet about 6-7 times per 24 hours. I don't take a thing to slow down my bowels and I bought a few pair of tight fitting (sorry no pics :)) jeans for the first time in 17 years! I sometimes get up in the night if I eat too late but often it just wake up at about 5am and just get on with my day earlier than everyone else (I find I get more work done in the couple of hours before the kids get up than the rest of the day!) I've not had any pain medication for several weeks. I still need an afternoon nap (and will use my surgery as an excuse for that for quite some time to come :p). I can do just as many sit-ups and push-ups etc as I could do this time last year and I have started to think creatively for the first time since the kick-in the guts that surgery is.

As a family we are starting to realise the subtle changes to our character that the bag gave. The washing machine is not on all day. I am confident to wear bright clothing (which does no end of good in lifting my spirit). There is nothing to hide, no embarrassing noises (that no-one heard anyway), no kneeling at the toilet. Oh, and I've finally started driving lessons...I used to have accidents when ever I sat up in a car. I'm planning a sky dive as a reward to myself - which I will send a photo of to my surgeon by way of thanks. I intend to enjoy every moment being without a bag, because I bloody earned it.

Physical intimacy with my wife is different and better but that's all i'm going to say about that.

I did consider getting my 10" scar revised but I have decided to keep it. I found the scar from my first op 17 years ago more troubling than the stoma. I realise now that it was because it had come about through a trauma that was inflicted not out of choice but necessity. This new scar was completely my decision and is a mark of my courage and strength to overcome my biggest fears and worries, a battle scar from a fight that I chose. Its part of me. My stoma scar on the other hand kind of makes my abdomen look like its got a double chin so I may get that sorted out...no rush though.

I went swimming in speedo's last week. For me it was a BIG deal. Swimming was always hard to enjoy (though I persisted), getting in and out of the pool, wearing bulky swimming shorts unusually high above my waist line to conceal the bag, communal showers and changing rooms. For the first time I experienced the lack of drag that swim shorts gave me and swam a length in my fastest time ever. I may enter the 2012 Olympics yet (not joking).

I've not experienced pouchitis at all and I don't take any pro-biotics either. Whether its just a matter of time I don't know but I feel its possible that because I don't slow my bowels down the bugs don't have time to grow. In addition I use an enema bottle almost daily, don't touch red meat or dairy and drink lots of water.

I have trouble with tuna (sounds like a good title for a book!) and don't dare go near orange juice (although i've gargled it like a wine taster a couple of times). I only experience butt burn if I forget to slap on the vaseline before going several times. These things are all familiar habits now and seem like no trouble at all.

I feel a bit like a butterfly that spent the winter cocooned in bed and painkillers watching DVD's. With all my new clothes and the glow of health and fitness returning just in time for the summer.

I plan to repay all the love and dedication my wife and children have given me this last year. With no regular income and an uncertain future its been physically and emotionally taxing for everyone. We are thinking about going travelling for several months and taking a break from the hum-drum. Maybe I will see some of you on the next step of our journey.

Thanks for reading me.

Love,

Dan

ps. I do intend to write about my hospital experiences soon so come back in a couple of weeks to see what crap care I had to deal with when I was with the professionals!

Notes After Take-Down

I found some scribbled writings in a notebook today that I've no recollection of making. I reckon must have made them the day after my surgery, I must have been saturated with Morphine at the time.

Mixed amongst the heavy drowsiness and pain relief I can definitely taste the thrill and elation. I have achieved my goal and the view from here is awesome. I did it. I can do anything. I put my mind to it, persisted, paid the price and I am now there, reconnected.

The wait from 7 am to 2:30pm with no food or drink was nothing compared to the 16 years this joke started on. This time around I was less frightened and even more serene. There was another 2 hours waiting in the surgical pre-op room but it was required time to be alone and get in sync with nature. I gazed beyond the window whilst everyone else faced inwards to their fate. I looked out towards the gentle swaying trees and let their mystical rhythm enhance and soothe my anxiety. I stayed confident, standing in my own shoes and eyes clear with glasses [everyone else accepts the rule – wearing clogs and handing over any personal belongings]. They – the nurses – reluctantly shaped around me, the objects represented a microcosm of control that I retained until the last moment, the point at which I handed over my unconscious body to be worked on.

Approaching from my right side and mildly reflecting in the window, my surgeon said – as if we were in mid-conversation continuing on from our last interface “Are you gaining any special insight from out there?”
“Well” I said, “I realise that those trees are another part of myself, they breath for me and I, them”...
“How are you getting on?”
“Good thank you, I am prepared in my mind and i am trying to tell my body what is going to happen to it is not shocked too much”
“Very good. You are definitely the most well prepared patient I have ever had and I am confident that is why you recovered so well from the last operation”, “We'll probably use staples as its quicker – I'll put a finger up your bottom to ensure the join we made last time has no narrowing and if so we might not go ahead.”
“I aware of that”, and then I said “have you had a busy morning?”
“The last chap was very hard work, a bit of a mess but we got through it...I won't be long now.” Then he patted me on the shoulder and an electrical current fired off somewhere inside and my confidence quadrupled “I will see you shortly”.

Survival Guide to Hospital: Hacking The Pain Scale

"On a scale of 1-10 how much does it hurt?"

Over the next few posts I'm going to share some of my philosophies that have grown from surviving in Hospital, an institution that has some bad practices that hinder recovery. From the best intentions, systematising care with bureaucracy. Some hospitals have de-evolved in to a place where the default pattern of behaviour breaks the spirit of the positive agents of healing and the sick get needlessly sicker.

The experience of pain is a purely subjective. Medical types have the objective of 'getting the pain under control'. So some smart-alec came up with a robotic flow-charted method of dealing with. If you are in pain they ask you 'on a scale of one to ten how bad is your pain?' 1 being negligible 10 being intolerable and it is according to your response what effort is expended to relieve you of this pain.

Every surgical incision I have experienced is excruciatingly painful when not covered sufficiently with pain relief medication. I have come to the conclusion that the question is flawed. It implies that pain at some level is acceptable, a tolerable level of pain should not be the objective, the objective should be to relieve all pain.

The question should be 'Are you in pain?' If yes, administer relief. Ask the question again and keep repeating this question until the answer is 'no' then observe and ask at regular intervals. If the aim is to relieve pain, a response of 1, 2 or 5 is the equivalent of a 'yes' and should be treated.

The present system does not work, it is founded on a subliminal philosophy that some suffering is good for the soul. My hack for this stupid system is you modify your answer to 'the question' to '9' or '10'. Pain is unique to you, a number is no substitute to communicate your suffering. Its not brave to suffer, its stupid if it can be avoided. Meditation and other things can work, I've used TENS and meditation successfully , I am capable of tolerating pain and have spent time in the past suffering unnecessarily due to various condition that taught 'some pain is good'. Its not, its a waste of energy, that could be used towards healing. You must get pain under control and the fastest way in the West is with medication.

Convenience of the carer should not take precedence to needs of the patient.

It is my experience that the lower the score you give the less effort is made to reduce your pain to nothing. Low numbers of pain are 'acceptable' to some hospital staff and the experience of treating in not standardised so giving a 5 or 6 to one nurse may not be treated the same way as another nurse.

I have been in severe pain, visibly trembling, sweating and pale yet still asked 'on a scale of one to ten, how bad is your pain?'. Robotic procedures dehumanise people in to caring automatons obsessed with adjusting their responses to a 'pain-scale'.

Its possible the attending carer might have no idea of the history of your admission, no idea of the cause of the pain and only concerned about the added amount of inconvenience required to obtain the appropriate medication. Fight them. If all they have as reference to your internal condition is a number, give them one that will get you the response you need.

Update 5

Day 79!

What can i say, the last couple of months have literally been a pain in the ass to get through but i made it.

The cumulative effect of me going going going leaned me towards consuming codeine (a codeine and paracetamol ready made cocktail of a capsule to be precise) whose welcomed side effect slowed things in the digestive and peristaltic department to a crawl resulting in giving my poor asshole a break for a few hours in between. The other side-effect which crawled over me as slow as the saga of the alien costume (see spiderman) caused my mind to fog over and for my brain to become addicted to the mild high that the 1 gram paracetamol and 60 mg of codeine blend. I would not say addicted in the crack addict do anything way, more so as a nice cup of coffee or a first cigarette of the day. Initially I honestly took it for pain relief, being that it was still only 3 weeks after surgery – the gas build up in my pouch in the morning and various tissue and strained sinews from all the nocturnal straining of the going going going the two red and white Akira style capsules really hit the bulls-eye of pain and put me in a dreamy happy state. I'd run out of codeine alone and was too apathetic to make any effort to replace the stock besides the Co-codamol side-effect (no doubt because I was taking the maximum dose) slowed things down so I could effectively get 5 hours uninterrupted sleep. You have to realise that these decisions were clearly taken in an irrational state of exhaustion.

Since take-down it has been my modus operandi to decipher the alchemical algorithm - the right combination of foods, distance between taking on fluids, the right creams, the best paper, the best side to sleep, what each new sensation meant; that creates the maximum quality of life from my new anatomical layout - all without the use of medication. Its much more complicated and sensitive to minute adjustments than I predicted. I had not realised it was going to be such an assault course (assault being largely upon my poor asshole by digestive enzymes). I had read about people that managed by diet alone, I do not let to have synthetic chemicals pumping round my body and hoped to achieve the same. I was initially in denial that I was taking the red and whites to slow things down and pressed on with experimenting with foods and juices. After about five days I just didn't give a fuck. After a week I wasn't even bothering to get dressed in the day and became a disconnected zombie just waiting for the next 6 hours to roll by so I could get that 30 minute buzz in my chest off the opioid. From going out for a walk a couple of times a day I found the cold to much of a threat and retired indoors to chaining DVDs and uncharacteristically watching as much crap TV as one human being can tolerate. Hence the lack of updates to this blog.

Still in denial that I was taking the drugs for their side-effect, I continued to take them for just that.

I couldn't really see any patterns in the behaviour of my system after a couple of weeks, my blood was saturated at a level that there was nothing to discern. Sometimes I needed to strain to evacuate my pouch, sometimes tears rolled down my cheeks at 3am and I jumped in an out of a bath every 30 minutes.

I was quite friendly for about 2 hours a day spliced in to 30 minute chunks splintered throughout the day but for the rest of the time you'd be lucky to get even a grunt out of me. This had a desperate affect on my already rung-out wife who concluded that my decent in to her interpretation of assholedom was due to something she had done or neglected to do which spiralled in to one sided complaining “I don't understand what I have done wrong” then a two-sided lackluster and ultimately anti-climatic argument caused by my exiting stage right to the TV or the toilet – on one or two occasions when I didn't actually need to go. The usual equilibrium of our relationship is polar opposite. But the comfortable numbness was very inviting and after the lot of the recent physical discomfort and mental hurdles it was nice...For a while. The balance of 'good days and bad days' tilted towards the bad until I began going backwards. I was being gung-ho with new foods during this period (ooh ketchup...oh no mango juice?). I had to roll things back to a day one diet. I had porridge for Christmas lunch.

New years day was a turning point. I dragged myself up and accompanied my wife and kids to the cinema. Another corner. I was prepared in my mind that this was the time to kick the habit and I was prepared to accept the fact that I was going to take Loperamide at least for a time to recover some normality to life and start earning some money and start digging out of this financial hole that I have kept at looming distance for as long as possible. Also my stock of capsules was running low so a trip out to the doctor was necessary.

My new GP, A young ex-military Doctor, bluffed his way through my appointment nodding and nodding, I left thinking I could have talked him in to prescribing Morphine if I had said it is part of my treatment. I left with a script for a hundred caps of Loperamide, some Paracetamol, Codeine (for when the gas pain is too bad) – he regurgitated the pain-ladder bullshit to me which I politely nodded though and when I asked for some industrial strength topical anaesthetic cream his was more than happy to write up EMLA which is the stuff they put on kids (and adults in five star anaesthetic suites where one of the staffs main axioms is patient comfort) to numb their skin before inserting a big hollow needle and canulating them. “I don't like using it for canulation” he said, “it takes too long too work”. “Well far be it for your convenience to be outweighed by a patients comfort” I said. He just continued talking, it was apparent that my opinion had no value as he looked at the clock on his screen confirming my statement entirely. I feel completely out of tune with alopathic medicine now, surgery was a necessity, emergency treatments fine but healthy living is the way i'm going to keep as far away from these people. EMLA is a pain/pleasure drug. On application the Hydrogen Peroxide burns harder than the discomfort it is treating but in 42 seconds (i've counted) you don't care.

My motivation was re-ignited when the doctor was going through my repeat items list and asking which items I also required. “Coloplast MC2000?” he said. “You can scratch those, I don't need them anymore.” Big grin on my face.

So i'm 4 days in to taking Loperamide twice a day and its effects are clear as a spring morning. Kicking the Codeine habit was headaches for a couple of days but not as a bad as coming off caffeine. The blistering pain of the internal blister (that I refuse to acknowledge may have been a haemorrhoid) has subsided and some of the lessons and habits I learned on my journey in to the heart of darkness, baths, creams, chamomile teas, upside down bodily contortions and enemas are all on standby if that bastard butt burn returns.

In the mirror my eyes communicate my new body sans bag and my brain is still somewhat perplexed, something was there, there are scars and a 17 year-old circular patch of skin that could do with a little sunshine. I occasionally stutter one of the idiosyncratic movements that only someone with a bag would know about, twitching the corners of my mouth when I correct my sub-conscious - 'we don't need to do that anymore'. Its almost difficult to think that it was there for so long but writing it down its no surprise that its not missed. I'm almost taking it for granted that I am bag-free but those baths are always going to be deeper than before. There are small changes that make a big difference. I can sleep on the other side of the bed, the house lacks an underlying odour that I only notice now its gone, there is more space in the bathroom cupboard, no clanging bathroom bin chiming a bag change every night, no kneeling at the toilet, i can fart, trousers that fit properly, the house is quieter because the washing machine is not on all the time. Its surprising how quickly these changes become the norm.

I am glad that 2008 is out of the way, the path is much clearer now and the hurdles don't look so scary.

Happy New Year!