27

Nov

D-Day + 1

I don’t understand what’s happening. Things are going good, for once.

I was fully expecting to be in agonising pain and have everything go wrong and terrible things to happen, but they haven’t.

I’m bewildered at the lack of negative outcomes thus far.

So let me explain what has happened thus far.

I came into the hospital at 0700 on Saturday. Now last month when I came in they said “oh you probably won’t go down till the early afternoon at best as they want to get the day cases in and out before you. So I assumed this would also be the same process this month. So in the morning I was admitted by the charge nurse and was seen by my surgeon and anaesthetist to review and revise my consent forms.

This is where things started to change. My surgeon asked to have a look at my abdomen which of course I obliged. She indicated that the incision  would only be approximately two to three inches in length. I had to double check she had meant that and she responded in the affirmative. That was a pleasant surprise. She did caveat that by saying that’s the best case scenario. Also she then said hopefully she won’t need to move my stoma. Hold up, this is news to me. This hasn’t been mentioned at all, last month or today, until now. My surgeon explained that due to my previous surgeries there is a good chance that adhesions had formed between my bowel, other bowel and other organs and my abdominal cavity. She would have to spend time carefully cutting through this scar tissue that joins the organs to be able to separate them and manipulate what she needed to safely. So with all the paperwork signed I was left alone with my thoughts in a side room.

I had been managing to healthily disassociate from my upcoming surgery for most of the time. There was no point in thinking and worrying about it, I couldn’t change the fact it needed to happen, I couldn’t really effect the outcome. Well that last bit is a lie. You can help sway the odds in your favour for better outcomes. I had given up smoking. If you are a smoker you massively decrease your bodies ability to carry oxygen and therefore heal and repair. Smoking is generally awful for your health and I could sit here and list loads of negative aspects and very little positives if any. Other than doing this, there’s not much you can do to effect any change, you just have to accept what’s happening.

So with regards to the surgery I was hoping for the best and preparing for the worst. Some of these things were very realistic expectations like a Ryle’s tube which is a tube that goes up your nose and down into your stomach to drain the contents of your stomach so you aren’t sick after surgery. Trust me I can attest to the fact you don’t want to be sick after you’ve had someone cut through your abdominal muscles and then staple them back together. Personally I find this way the best way for me to mentally prepare for something like this by acknowledging all the negative things that can happen, but actually you look at the statistical chances of some of them happening and they are miniscule. I had more chance of dying in the car on the way down to the hospital that morning that I did dying on the table in the operating theatre.

A sharp knock on the door interrupted my thoughts. It was a healthcare assistant who had come to take me down to theatre. Here we go, Standby. We walked the short walk to the lift the we went up or maybe down I don’t remember turned a corner and followed them into the room marked ‘Anaesthesia Room 2’ Here was the anaesthetists I had met earlier and one or two of his assistants. I climbed onto the bed in the middle of the room. On the side there were two large 100ml syringes in syringe drivers filled with milky looking fluid. I’d hazard a guess this was propofol, this was the shit Michael Jackson was using as a sleep aid. That’s like doing chemotherapy for your hair because your tired of cutting it. Propofol is lovingly referred to as ‘milk of amnesia’ because of its milky colour and amnesiac properties. The anaesthetist hooked me up to the two syringe drivers and set them off, I remarked about how crazy it is that he’s about to paralyse every muscle in my body, take over my breathing and wipe my memory. Then the lights went out like a warm fuzzy blanket was pulled over my head.

Now waking up is a hazy affair. I forget bits, remember bits, its very hazy thanks to the milk of amnesia. I’m going to go with the bits I definitely do remember. I woke up and started to give myself a vague once over, this is where things got weird. So I had my feeding NG that I thought they would have removed and I had no Ryle’s tube. I had no central or Picc line so that was good. I had a catheter which was to be expected. I looked under my gown and saw one small dressing only about two inches by three inches. There were a couple of cannulas in my abdomen that were slowly administering local anaesthetic to near the incision. My stoma was where it was before it hadn’t been moved. Now this can’t be right I thought, maybe they have forgotten to put things in and they are going to have to do it later. Also a tiny voice in my head was telling me that this was the best case scenario and it could just mean everything’s gone really well. I couldn’t believe it thought. I never get lucky let alone that lucky.

Well I should probably buy a lottery ticket because it didn’t finish there. At 5am today the nurse came and asked if I’d like to get up and get a wash, I thought fuck it, why not, I managed to sit up on my own in the bed with no assistance lets see how far we can push it. I sat up in bed and the nurse gave me a bowl of warm water and some wipes to clean myself with. Once I had finished doing that I managed to turn myself to the side and stand up. I was a bit wobbly and light headed but I’d had zero calorific intake for the last 24 hours and water had been limited as well. I managed to move across to the chair by my bed and sit in that where I could sip water as my stoma had been active and had output (which is key for knowing that you are not suffering with Ileus, where your guts are asleep and paralysed). I stayed in the chair for the next hour or so I was exhausted as I hadn’t managed much sleep so I moved back to the bed and tried to doze off again. It can be irritating with a cacophony of bleeping and whirring from the various infusion machines. I cant remember who it was but a doctor or surgeon came to see me and said that my catheter could be removed given I was mobile enough and was able to sip water.

So the NJ tube remains in as they are going to use that to feed me whilst the anastomosis between the small bowel and the stomach heal up a bit before I start to eat and pass food through it. This is the sensible  and safest option.

I’m just in disbelief that this has all gone well and not only has it gone well, it’s gone really well. I get so prepared for the worst outcomes I honestly rarely ever give the positive ones any thought. So these positive outcomes have been a breath of fresh air for me. Now there are still time for things to go wrong of course, like when I begin eating but just as I have been hopeful, I remain so. Tomorrow they are going to start feeding me with the NJ tube so that the feed avoids the anastomosis and allows it to heal a bit quicker and with no complications.

So tomorrow I hopefully can start feeding via NJ tube to get some calories in me which I desperately need right now. I am running on fumes, hopes and dreams. Then hopefully I will start on a strict low residue diet and gradually increase the quantity and how solid the food is until I am eating some semblance of a normal diet. Something that gave me some optimism about being able to eat normally again was a gentleman I came across on reddit called Austin, he had a small bowel resection and a gastrojejunostomy all in one go. You can see his old posts from years ago where he was clearly very skinny  and then had surgery and he is now eating totally normally. He eats enough to take in 3500kcal a day and is in the gym 6 days a week. He is absolutely shredded as well. I don’t know if I can be bothered with going to a gym, not at the moment anyhow but its nice to know that he has managed to do it. I have some slight concerns like dumping syndrome which experienced a little when feeding larger amounts down the NJ tube but there are ways to deal with that. Just got to wait and see what happens with it when I start eating.

Right I have fought the urge to fall asleep during the day. I am battling to keep my eyes open, It took me nearly 5 minutes just to write the previous sentence. So I think that’s me done for today. Nap timeeeee.

Ad astra per aspera

1 year ago Short URL 1 Comment

Crohn's disease/surgery

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25

Nov

Fresh Starts

I toyed with the idea of starting a new blog, a fresh start, but honestly I couldn’t be bothered with the rigmarole of it and I still remember the log in for this, so that’s easy. It’s been a long time since I wrote anything on here and much has happened since 2017. I find myself wanting to communicate my thoughts randomly and social media feels very self-indulgent and I know at its heart it’s a toxic drain on society so maybe I should move away from it. I probably won’t but I can dream. This just feels like an online journal that I can word vomit onto and anyone can read it if they feel like it. This is going to be a rambling mess with no structure, hold on.

So in short the world seems to be slowly sleep walking into oblivion. Imagine the human race is a passenger on the sinking titanic. We have been offered a spot in a life boat since we started taking on water but we are too busy admiring the night sky to take it seriously. Then one of the ship’s officers is telling us the boat is sinking and we need to abandon ship but again, we have more pressing things to do like check Facebook, see how our bitcoin is doing and what’s on TV tonight. Right now it feels like we are ankle deep in the cold night water of the Atlantic and there are only a few lifeboats left, but we are too busy on our phones googling “Is my boat really sinking?” and reading articles about “Boats can’t sink and life jackets are a form of illuminati control”

 On a global scale we have had Covid, war in Ukraine, our economy has gone to shit, the climate is almost beyond repair in the UK our politicians are beyond a joke, but don’t worry “I’m A Celebrity” is back on. It feels like an old quote my grandad used to say “Don’t worry we haven’t got a plan, so nothing can go wrong” Its bleak times for many people globally. Sometimes it makes me quite nihilistic, wondering what the point in even trying at all is if as a species we seem quite content blindly marching towards our demise. Social media and mainstream media just drives more and more division, the polarisation of our society is coming to breaking point in many places, take the US currently for example or Iran, killing civilians because they don’t agree with wearing a headscarf because your imaginary friend says you must. Is it all even worth it?

The answer is I don’t know. What choice do we have but to carry on and make as positive an impact in life as we can.

We are sold a bit of a dream that we live in a democracy and a free country where we can achieve our dreams, earn loads of money, get a nice house and we will be listened to by our politicians. I mean other than voting in local and general elections, how much change can you and I exert on anything? Yes there is protesting and of course we love a petition that really objectively achieves nothing most of the time. But how much change can you or I really effect on society and how we are governed?

Now I understand I was not dealt the same cards as everyone else at the table. I’m watching friends develop their careers, buy houses, get married and start families. So evidently it is true for some people that you can carve out a good life for yourself with some hard work and self-discipline. I’m also aware I’m from a white working class background and many of my friends and parents you’d maybe put at middle class and we have had an advantage over many other people who haven’t had the same opportunities or help that we have had. Many people are not in this position and a lot of these things like property ownership are a pipedream, that really will never be attained. I’m 35 years old, still living in a two bedroom flat with my mum and I’ve been unable to work for the last 3 years because of my health. It’s been a shit show for the last 3 years. I had to leave a job and hopefully a career that I was just getting my teeth into, working in TV production. I would love to go back to it, but the longer I’ve been unwell and depending on what happens in the future will dictate if this is a possibility or not.

So ok, it’s been pretty doom and gloom up until this point. It’s not all bad though.

Being unwell for the last 3 years has been an interesting rollercoaster, especially coupled with covid. My mental health took a nose dive for a period of time, as I think anyone’s would have if they were put into the same situation that I was. I found myself pretty despondent with life, seeing no purpose in it, no light at the end of the tunnel so to speak. I don’t know what clicked one day, but I had decided I had enough. I realised that no one was coming to save me. I had to self-rescue.

It started with small things like making my bed, putting a wash on, walking to get a paper and just building on top of these small things. I had started to ingest a lot of stoicism from social media and decided to freefall into that rabbit hole reading Marcus Aurelius’ ‘Meditations’ and other bits from other stoics and philosophers. Reading a really good self-help book called ‘The Feeling Good Handbook’ by David Burns was invaluable to me. It was recommended to me by my psychologist and its worth its weight in gold. I would honestly recommend it to anyone and everyone even if your only mildly struggling or having trouble with any type of anxiety or depression.

Sadly in the UK our mental health system is in tatters. So many people are struggling to access the support they need and often its left to absolute crisis point where it’s even harder to walk someone back to good mental health. To use an analogy I saw the other day I feel like most people reach out when the barn is smouldering, but often don’t get the help till the barn is ablaze or even charred ruins. We need to do everything we can as individuals to help ourselves and solve our own problems. I am not naive enough to think that this can apply to everyone, there are people who absolutely will need to access professional help to get them to where they need because of the severity of their conditions but for those of us in that grey area who might just be struggling a little bit or even a lot, there is so much we can do to help ourselves in these situations. We have access to the internet and so much information. Do you know there’s more computing power on your smartphone than NASA had when they landed men on the moon? and your using it to look at cat videos.

If you are struggling with your mental health please reach out to someone, anyone, me. I would make an appointment with your GP as a first port of call. They can help to signpost you and refer you to the most appropriate help. You can also refer yourself to your local IAPT Service (Your GP can also do this). This stands for Improving Access To Psychological Therapies. This is basically the NHS’s kind of front line mental health service for people who may be having issues but aren’t acute enough to warrant urgent attention. If you google the name of your local authority and IAPT it will usually bring up your boroughs service. You can then usually refer yourself to the service online, they will then contact you to carry out an assessment of your needs and they will then come back to you with a recommendation for the most appropriate help which could be guided self-help or a course of CBT for example. In an emergency contact 999 or the Samaritans on 116 123 twenty four hours a day, 365 days a year, your local authority will also usually have a crisis line that is usually operated 24/7.

I had a thought the other day. I have been diagnosed with Crohn’s Disease for 17 years now, out of those 17 years you can effectively write off nearly 9 of them as me just existing and trying to stay alive, with generally a very poor quality of life during those times. That’s nearly a third of my life so far that I won’t get back. Now I could sit here and cry and shout that its unfair, ask why has it happened to me? but that’s not going to get me anywhere and I don’t have any more tears to cry for things that I can’t change. I read a book recently that I hadn’t previously heard of  and knew nothing about ‘Mans Search For Meaning’ by Viktor Frankl. Reading this book had such a profound and enlightening impact on me and I regret not having come across it sooner.

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
― Viktor E. Frankl, Man’s Search for Meaning

Viktor Frankl was a psychologist who during world war two was interned in various concentration camps. He lost most of his immediate family in the camps and witness the sheer horror in and inhumanity of the holocaust first hand. He drew on his experiences as a psychologist to help him and others survive. When he was liberated by allied troops he went on to found a school of psychology called Logotherapy. He wrote his book which can basically be split into two halves. The first being his experiences of the holocaust and the behaviours in himself and other prisoners that he observed, how people found the will to continue and survive and also how they resigned themselves to their fate and died. The second half is Logotherapy in a nutshell. He does a great job of explaining the base concepts so even a layman can understand. There were bits I had to look up but learning is always good.

Now I will probably butcher this but the basics of logotherapy is based on the premise that the primary motivational force of an individual is to find a meaning in life. I could flood this with great quotes from Frankl but I’m resisting the urge to. He argues that even in suffering we can find meaning and no matter what is taken from a man, we still have the choice about how to react to and feel about whatever happens to us. As Marcus Aurelias says “You have power over your mind – not outside events. Realize this, and you will find strength.”

Reading his book gave me many profound realizations about my own life. I cannot control what is happening to me right now, I can’t do anything about it, but I can decide on how I react to it. Tomorrow I am having surgery, I should actually have already had this a month ago but unfortunately my operation was cancelled because of a bad chesty cough I had and the anesthetist decided it would be safer to postpone it. Considering how I felt the few days after it was definitely the right call to make. I’m waiting on surgery to bypass a narrowing I have in my duodenum. To do that the surgeon is going to perform a gastrojejunostomy which is a procedure where a section of the small bowel, further down from the narrowing is pulled up towards the stomach and then is stitched to the stomach creating a new opening between the stomach and that section of bowel, allowing food to pass directly from the stomach into the small bowel further down from the narrowing ergo avoiding it.

Best case scenario this surgery will fix all my problems and I will be able to go back to eating somewhat normally again with no pain or vomiting. It will mean I am able to go back to work and have more of a social life than I do at the moment, hell maybe even travel. Worst case scenario, well we will worry about that if we get there. No point in fretting about it now. I’m cautiously optimistic about this surgery. All I can do is put my organs quite literally in the hands of a very capable surgeon and her team and hope for the best.

A couple of weeks or so ago I had a nasojejunal feeding tube fitted. This is a tube that goes up your nose, down your throat, through your stomach and in my case through the narrowing I have into the beginning of my small bowel. They put the tube using an endoscope which is a camera on a tube essentially. Now an last time they did this they could get the scope, which is about a centimeter or slightly more in diameter through the narrowing with no issue, this time it was too narrow for them to be able to get it through which shows its getting progressively worse and will probably totally close up. This probably explains the awful crippling pain I’m getting even when I am only on meal replacement shakes and other liquids. As much as I am dreading the surgery, it can’t come soon enough.

Anyway, I digress. Reading ‘Man’s Search for Meaning’ showed me that if a person in such dire circumstances such as living among the horrors of the concentration camps can still find meaning and purpose in their life then surely I have absolutely no reason as to why I cannot also find meaning and purpose on my own life in my own particular set of circumstances, even if they are far from ideal. “Man does not simply exist but always decides what his existence will be, what he will become the next moment. By the same token, every human being has the freedom to change at any instant.” V. Frankl Our meaning in life can change from day to day and moment to moment. Right now the meaning and purpose in my life is to get better and regain some semblance of health and normality. If and when I achieve that, my meaning in life will change. It’s a fluid concept in the way Frankl describes it. Your meaning in life right now may be to provide a good upbringing to your child, to care for a loved one with a  terminal illness, any number of things. Your meaning will change though. By changing what you believe to be your meaning in your life and controlling your narrative you can control how you react to your circumstances. You can’t control becoming sick, losing a loved one, being made redundant but you can control how you react to that. Finding meaning in my own suffering gives me a purpose. I’m suffering to be able to get better and then hopefully improve the other things in my life like being able to go back to work and earn a living. Focus on the short term and the small goals and the larger ones will materialise naturally. I’ve found a lot of comfort and wisdom in books I have read recently, they have certainly opened up my mind to new ways of thinking and the change the way I look at and think about some things, hopefully in a more positive way.

Its amazing what we can do with the power of thought alone. Look at the placebo effect or psychosomatic illness. We are capable of convincing our body crazy things sometimes and I have learnt in the last 15 or so years of my life just how important having a positive mindset is. Don’t get me wrong, sometimes its very hard to stay positive and you see a lot of toxic positivity these days where you should be happy and ok all the time. You have to remember sometimes its ok not to be ok. It’s perfectly normal to be sad when a love one dies, or a relationship fails. It’s still normal to experience negative emotions they make us who we are and make all the positive ones so much more worthwhile. Look if your sitting in bed sobbing for most of the day and drinking Jack Daniels for breakfast, then yes that’s when I’d say you have an issue. However if you can remain positive and try and find something good in even the most negative situations you will help yourself to be more mentally resilient and not succumb to bouts of elongated low mood which can end up leading down the path of depression.

Finally after a month of waiting I have my delayed surgery tomorrow. I really hope this helps me. I’m aware things could go wrong or there could be complications but it could also go swimmingly well and fix everything. Time will tell I guess.

See you on the other side.

1 year ago Short URL 3 Comments

Crohn's disease/surgery

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