Photographer with a stoma | Pinkie Pete

My story of stoma surgery – the birth of Pinkie Pete

This is the story of the birth of Pinkie Pete – my stoma – or to put it another way how I became a photographer with a stoma. Yes, of course he has a name! This blog is a combination of three blogs, from preparing for surgery, through the ‘Night of Terror’ and into recovery. Also, in part three I’ll chat about how I prepared myself for the new normal, basically how I mentally attempted to get ready for the major surgery that was about to hit me. Buckle up, it’s a bumpy ride and it’s a very long story so you may need a cup of tea & a slice of cake to get through it! And feel free to use the contents below to skip through to bits you haven’t read.

Part 1: Preparing for stoma surgery

The journey from diagnosis to surgery

Although it is called part one, this is actually the second blog about Pinkie Pete. To find out who Pinkie Pete is, read my first blog which is an introduction to me and my more personal series of blogs, 2019, the year of my life changing (sort of) surgery. This blog will explore the ‘birth’ of Pinkie Pete, and I have broken them down into parts one to three. They start here with part one, which is about the early stages of this journey – learning about needing major, life-changing surgery and deciding on which was the best of the bad bunch of surgical options.

For those of you who aren’t aware, in 2018 I was diagnosed with a rare genetic condition called attenuated Familial Adenomatous Polyposis (aFAP). Essentially lots of small polyps (bumps) were growing in my bowel and any one of them could turn cancerous without any real warning. The treatment: remove the large bowel (colon). Which was the terrifying news I first received in the summer of 2018. This blog will be a tale exploring what happened and how we decided which option was best for us.

Diagnosis

2018, seems like a lifetime ago now. It was the beginning of the journey towards the surgery and it all started with my sister being diagnosed with aFAP, and having to have her own surgery. Given that this is a genetic condition, the rest of the family were all checked out.

One doctors appointment, a meeting with a specialist and a whole lot of waiting later I was sent for a colonoscopy. The colonoscopy itself, wasn’t the most comfortable of experiences. But beyond the physical discomfort I got myself pretty freaked out by it. I could see the screen as they were doing it and could see lots of bumps, which I assumed were polyps which in my head meant I had this aFAP. Afterwards however, I was reassured that it all looked fine and there was nothing to worry about. Phew!

However, that wasn’t the end of the story! A few weeks later, I got a letter through the door. Opened it up. And froze.

“I am writing to you to confirm you have an an appointment to see a surgeon….”

A surgeon?

At no point after my colonoscopy was I warned of the possibility of surgery. Whilst I can understand it probably wasn’t the speciality of the person who spoke to me, I came out of it feeling I was in the clear. But no.

Meeting the surgeon for the first time was a big, scary moment. He explained that I would need surgery to remove my colon (large intestine). It didn’t have to happen imminently but should happen in the next year or so. This brought up all kinds of questions, thoughts and ultimately emotions.

In my head I was totally just trying to rationalise it all. It had to happen. It was for the best. Everything would be all right, wouldn’t it?

Highfields lake paddleboarding and swan in the sunshine

After this meeting, I remember we went to University of Nottingham’s Highfields campus for coffee – it’s just around the corner from the hospital and was great place to attempt to clear our heads.

It was a really emotional time though and I remember staring out into the lake, not knowing what was going to happen. That uncertainly and the big life change that it was going to bring was hard to comprehend. This would be the start of a whole mental roller coaster that has continued until well after surgery.

Learning

What followed was months of researching, talking to various experts and soul searching.

We were given three basic options:

  1. Remove the large bowel and rectum, then use the end of the small bowel to make a J- pouch (no, I had absolutely no idea what that meant either!)

  2. Remove the large bowel and connect the small bowel to the rectum.

  3. Remove the large bowel and rectum and have a permanent stoma.

Now each of these options sounded pretty major and scary but in all honesty the third option, a permanent stoma, was an absolute ‘NO!’ when I heard it. I thought, “No, young people don’t have stomas. Won’t it stop me surfing? Paddle boarding? Could it even stop me doing wedding photography? Will I have to have a different diet? No, I’m absolutely not having a stoma!”

And yet, here I am writing about Pinkie Pete, my stoma!

So how did this all happen?

After being given those three option in 2018, I was sent away to talk to specialists; a stoma nurse, a J pouch specialist and a geneticist. The surgeon wanted us to get all the information to make the most informed decision I possibly could, which I think was really helpful in coming to terms with it. Having all the information, talking it through a lot really helped me to take ownership of the choice and to utterly believe it was the only option for me (not to say the others aren’t perfect for other people!).

The stoma nurse

As I said earlier, I had absolutely no intention of choosing the stoma bag option but we went to meet the stoma nurse regardless.

My mind was racing with questions: Would it stop me having a life? Would I be really dependent on medical supplies? Would it stop me living my life? How would I cope with it? It’s just old people that have a stoma bag isn’t it? Would it stop me surfing? What about paddleboarding? Would it smell? What if it leaks? What can I eat? Will I be able to eat gluten again? How do you clean it?

As you can see, there were a million questions running through my head. Those of you who know me personally, won’t be surprised that the first of those questions I asked was about whether I could still surf. The response was a resounding yes! A good start. The stoma would be placed to one side of my body so I’d still be able to lie on my stomach on a surf board and there’s no other real limitation – once fully recovered of course. Getting stoma bags wet isn’t a problem, they are unlikely to leak, the salt water isn’t a problem for them. In fact, he told us that he’d worked with people that went back to all sorts of sports, playing rugby was the one that stuck in my head. If someone can have a stoma and play rugby then you can do anything right?

In answer to the rest of my questions. The reality of a stoma bag surprised me. A lot. Basically he said it wouldn’t really stop me doing anything. Anything. I might have to adapt how I do things but it wouldn’t stop me doing it.

I was also really interested in what I’d be able to eat. I was gluten intolerant at the time so was curious if my diet was going to get even more complex. But no, not really. He said they won’t tell you want you can and can’t eat, they’ll advise about the risks of eating certain foods causing potential blockages or too much wind but everyone is different. It was even a possibility that I’d be able to eat gluten again!

The geneticist

Our second meeting was with the geneticist, this was really helpful, but didn’t really contribute towards deciding which surgery to have. It was all about the prospects of having children and whether we would pass this onto kids. It’s a long story, which I’m not going to go into here. I may write a separate blog all about it one of these days. Needless to say, there are several options, none of them really jumped out as a clear winner – there’s a lot of different pros and cons and it’s pretty complex!

The J-pouch specialist

This had to be a phone call because the nearest J-Pouch specialist was based at St Mary’s in London. Which was a bit of a worry to start with. If the nearest specialist is in London, then what if something goes wrong?

Our first question was, what actually is a J-pouch? Basically, they remove your large bowel and rectum and then form a J shaped pouch (hence the name) with part of your small bowel to give you a new…err…bum hole. The purpose of this pouch is to act a bit like the rectum, to allow output (poop) to gather there for and for some of the liquid to be absorbed and for it to become a bit more like poop.

This allows you to sit and have a poop in the normal way. However, as the specialist said, you have to almost relearn how to hold it in and therefore how to go to the loo again (or to stop yourself going to the loo as soon as something arrives in the pouch). For us, this sounded like a lot of extra stress and pressure at an already tough time.

So why do people chose this option? Apparently, it’s mainly a choice to avoid the perceived stigma, appearance and inconvenience of having a stoma. After our appointment with the stoma nurse, none of which sounded particularly terrible to me.

I’ve since heard of people also preferring it because it’s ultimately better for the environment – stoma bags are largely plastic and after a few days, when it’s done it’s time it has to be thrown away. Whereas with a J Pouch is just like anybody else going to the loo, no bags needed. This is something I don’t love about having a stoma, but for me, my physical and mental health was worth it. Although I’d absolutely love it if there was some progress towards them being in some way more environmentally friendly, maybe one day.

Towards the end of the conversation, the specialist said that quite of lot of the people they see in their clinic in London, have the surgery elsewhere but come to them a few months down the line when things go wrong where they haven’t be treated/ supported by specialists. Now London, is a long old way from here. So this, along with everything else that was said, didn’t make this choice sound great for me.

But what about the second option, you haven’t mentioned that?

2. Remove the large bowel and connect the small bowel to the rectum.

Basically, in my particular case, this didn’t really make any sense. I had lots of polyps in my rectum. So whilst that would have meant I could have pooped more normally, it would still have meant having major surgery, with the risks that come with it and ultimately there would still be a risk of cancer at the end of the day. And I would have to have further surgery to remove the rectum and either have a stoma or a J pouch later on anyway.

So given the three options, for me there was only one that made sense – remove the large bowel and have a permanent stoma.

Waiting

So, having met all the experts and done a fair amount of thinking, soul searching, a lot of talking with friends and family and honestly a fair bit of freaking out, what next?

Waiting.

At first we were waiting for another appointment with the surgeon. Which didn’t come. And then we went on a holiday with my family. At which point I got a text reminder about my appointment the following day. Unfortunately, we were on a cruise somewhere in the Canaries at this stage and had a couple of weeks away ahead of us and absolutely no way to get to the appointment. The letter must have got lost in the post and so I missed my appointment. So we had to wait some more.

More waiting. And phoning the appointments team. Again. And Again.

Finally on December 31st 2018, we met my consultant again. We talked through what we had learnt and told him we’d decided on option 3. I was going to have a permanent stoma. That was it. It was actually going to happen and started to feel more real.

In my next blog, I’m going to tell the tale of surgery, my time in hospital and the beginning of recovery. It was a bit of a wild ride!

In the meantime, I would love to hear from other people that have been in a similar situation, so please do leave a comment or get in touch if you would like to!!


Part 2: Hospital

Having confirmed with my surgeon which type of surgery I wanted on New Years Eve 2018/19, the rest of winter and then spring was spent waiting for a surgery date to be confirmed. Our lives were very much in limbo at this point, we knew we would have a 3 month warning, so couldn’t book any holidays for spring or beyond (although we did have a weeks trip to Morocco in February, booked once we had met with the surgeon) and I even had to turn down photographing a couple of weddings just in case it was when my op was, which they both were in the end. In June, after another appointment with my surgeon, and still no date, Amy did a bit of pestering (on his advice!) and we were told a date had been set for 3rd September 2019. It suddenly became a whole lot more real.

This was really happening. A tear or two may have been shed at this point. But it still felt so surreal.

In the weeks ensuing, we made it our mission to just keep living our normal lives, but get out as much as possible and go paddling, enjoy the summer, and see our friends and family. I’d already come to terms with having to have this surgery. In my mind there was no option to have it or not, I didn’t want to get cancer and this would guarantee I wouldn’t. I didn’t feel unlucky, or miserable about my situation, in fact it was a positive. I have been given the option to prevent a cancer I was genetically predisposed to, how many other people get this same opportunity?

On top of this, both Amy and I found the best way to deal with the impending scariness of major surgery, and the life changing nature of it, was to tell as many people as possible and to be open about the nature of the surgery. I was going to have my colon and rectum removed, and my bum hole sewn up forever! Yes, I said bum hole! That’s something that can be hard to talk about for some people. But we found by being a little more vulnerable and talking openly about parts of your body that you don’t normally talk about with others so liberating, and in that process we realised how many people were ready to support us in this difficult journey. And some friends became truly wonderful friends in that process.

After a summer of paddle boarding, and other fun and larks, the summer was over and suddenly it was September. We decided to do a walk in the Peak District on the 2nd September, to take our minds off what was about to happen and to tire ourselves out so that we would be able to sleep that night. After a really nice day walking, drinking coffee, and eating in a lovely pub, I was suitably exhausted and felt mentally ready as possible for the surgery the next day.

Surgery

After a short taxi journey to the hospital, we arrived just before the surgical triage unit (STU) opened at 7am, and were met by the first of many, many amazing nurses that we’d meet along the way. They did a few checks and measurements before we met with the surgical team, anaesthetist and stoma nurses (to mark on my tummy where to put the stoma). And before we knew it, it was 8.45am and the bed to take me down to theatre arrived. It suddenly kicked in for Amy as we had a big hug goodbye, seeing her get upset as I was taken away was really hard, this was all very, very real!

I have to admit the rest of the day was A LOT harder for Amy than it was for me! Luckily she had a couple of wonderful friends who picked her up and distracted her for the day. The surgery went well but it really did take all day. Amy didn’t get the call until 5.30pm that it was over, and it took them a long time to bring me around from the anaesthetic, turns out I love to sleep! But again, this delay was a major source of stress for Amy, as well as my dad and step mum, who by that time had arrived in Nottingham and were waiting in the hospital cafe. It wasn’t until 9pm that I had been moved onto a ward and Amy was able to come and see me. Apparently I asked how her day was! I was pretty groggy and out of it, but at least my manners were still in place.

*** I should say the hospital was crazily hot at this time of year so apologies that you have to see my hairy chest in the photos/ videos! Warning, there are also pictures of surgical wounds below ***

The first 5 days of recovery were really good. I was up and walking a couple of days later (not very far or very quickly as you can see!). My stoma was looking big and pink and therefore healthy. This is actually the reason he’s called Pinkie Pete, he’s Pink and felt like a Pete. The choices beforehand were Steve the Stoma or Pinkie Pete (so original, I know), although the name wasn’t confirmed until a few days later!

On day six, I was hoping to leave hospital, I was waiting for confirmation from the nurses that my ‘output’ (poop) wasn’t too loose. This would be worrying as having too much fluid ‘output’ means you becoming dehydrated pretty quick, although it’s normal for it to be looser in the early days, they need to keep a watch on it. Late afternoon, I was told I’d have to wait another day which was really frustrating at the time, however, it proved to be a blessing in disguise! Amy’s parents, who had been there with Amy over the weekend, decided to drive home as I was going to be released the next day.

The Night of Terror

However, a couple of hours later, I developed some pain around my bum, which moved into my lower belly, and then developed a fever. I was a sweaty, shivery mess! My stomach was becoming increasingly swollen and I had a big bleed from my bottom on the way to the loo. I remember just shouting for help not having any idea what was going on.

What followed we now, not-so-affectionately, refer to as the ‘Night of Terror’. I was writhing around in pain. The pain killers I had (by this time I was off morphine) really weren’t touching the sides, there was no way I could lie down to get comfy and on top of that, it was pretty scary. What on earth was going on?

Amy remained by my bedside looking after me long into the night. She was dabbing me with wet towels, ensuring I stayed hydrated, pushing the nurses (who were way overstretched with many patients to look after) to help wherever they possible could, get me morphine again and generally being the incredible person that she is. She stayed until around 2am that night, after which I did manage to find a position which was vaguely comfortable after a few rounds of oral morphine, and get a bit of patchy sleep. I genuinely don’t know how I would have coped without her, she was my rock.

The next full day, we were waiting for a decision about what could be going on. In the day itself my fever seemed to clear and the pain wasn’t quite so bad. There was a possibility that it might just pass on it’s own.

I was wondering what it could be. I didn’t have a catheter anymore, but they had checked my bladder in the night in case it wasn’t emptying, and it was fine. So was it a bleed inside? Had something gone wrong during my operation? The sweating and the pain were a bit easier to manage but my tummy was very swollen and it was pretty horrible not knowing.

This picture says it all really. Amy was always there for me throughout.

In the afternoon, I was put on the waiting list for a CT scan and would be taken down when there was a free slot. I waited all day, and even into the night there was still a possibility they would do the scan, but wasn’t taken. The fever came back that evening and lasted over night, the pain was still pretty horrendous and I didn’t sleep a huge amount.

On the morning of day seven, I was starting to feel slightly better. However, I still had a fever and was now being given antibiotics. After the doctors saw me on the rounds that morning, they obviously didn’t like what they were seeing as I was sent pretty quickly for that CT scan.

Given how swollen and tight my tummy was, I couldn’t lie down flat, put my legs up or take deep breaths and hold it (all of which I was asked to do), the CT scan was one of the most painful experiences of my life.

Emergency Surgery

The results showed that I had a bleed internally and would have to have emergency surgery later that day to open me up and drain out the fluid and sort out whatever had caused it. This, and the night of terror, were the scariest parts of the whole process. Especially when the anaesthetist talked us through the risks in far, far too much detail. I know they have to tell you, and we got it all the first time around, but the way he said it was unfortunately was not very reassuring or helpful for myself or Amy at that moment in time, feeling very panicked and worried at this point! The words ‘critical’ and ‘sepsis’ certainly didn’t help. He also said there was a possibility that they would have to keep me unconscious for a couple of days in intensive care (although I can’t remember why!?) or at least a stay in the high dependency unit. He even managed to make the possibility of having an epidural for my pain relief, which is a normal part of many child births, sound terrifying. Luckily, the surgical registrar came along shortly after and very much reassured us, he was very calm about the surgery and explained how the risks the anaesthetist explained were all very, very rare. Still, it was all very scary stuff. This was emergency surgery, it also meant an extended recovery time as there would be a big new wound and, as I was being put to sleep, I again heard the surgeon talking about being worried about sepsis.

Considering all that, the actual surgery went absolutely fine and I woke in recovery before being transferred up to the High Dependency Unit (HDU) covered in wires and tubes. Apparently I called Amy from the recovery unit but made barely no sense at all with my croaky voice and being off-my-face on the anaesthesia! Given what had happened over the past two days, Amy’s Mum decided to come back up that day, and luckily arrived in time to meet Amy back at home while I was having my surgery, and stayed with her for a few days.

Recovery began again

I remember waking up, feeling really out of it and obviously not healthy but I now knew what was going on. I was also pain free with a local anaesthetic set up around my large wound, and I had a button to click and deliver the medication whenever I needed it, just like you do with morphine. I had morphine too, this time it was being delivered straight into my neck! There were a few tubes in my neck, apparently it delivers anything that needs to go into yours veins, like antibiotics, pain relief, or fluids more quickly than if it’s into your arm. I had a big extra wound to heal in my stomach as they had to open me up rather than do this one keyhole so I knew recovery would be much longer but, importantly, I knew why I had been in pain. I could cope with that and knew the pain would, eventually, stop.

I spent a few days in HDU with the most amazing and attentive nurses. They were incredible at getting me to believe in myself by explaining what I could do (it was a lot more than what I thought), showing me ways of moving myself around and then making sure I actually did it to build up my strength!

As there was a student nurse who had just started, they even taught me (through teaching her) some fundamentals of doing the rounds like the ABCDE tests (Airways, Breathing, Circulation, Disability, Exposure), and the doctors talked me through the tests they were running which was really interesting to hear about it all (I had been so starved of any kind of mental stimulation at this stage!)

I was absolutely full of morphine at this point to control the pain, as you can imagine, and was having some pretty crazy dreams and even some hallucinations! I remember seeing lots of weird patterns whenever I closed my eyes. At times, I closed my eyes and could see the bed and everything in the room as if I had my eyes open, but there were people surrounding my bed looking at me. This would make me jump, open my eyes and they would suddenly disappear, which was all a little terrifying and definitely didn’t help with sleep!

After three days, I was moved back to a normal ward and continued my slow recovery, having different wires, catheters and drains removed day-by-day, until eventually I was declared ready to be discharged, 15 days after my initial admission.

Discharge

I remember being driven through residential streets of Nottingham being amazed by everything, there’s only so much entertainment you can get from staring at a wall/ other sick people in a hospital/ Netflix. Suddenly I was being exposed to so much we take for granted on a day-to-day basis. Autumnal leaves, flowers in peoples gardens, houses, cars, people walking along the pavement. It was all fascinating!

I felt so free!

The Fever and Re-admission

However.

After a mere 24 hours at home, I spiked another fever. Thanks to our neighbour who is a nurse, we could check my temperature. She then drove us back to hospital and waited with us, keeping Amy sane and full of coffee during an agonising, extended wait in A&E until 2am before I was finally seen by a doctor and re-admitted.

Despite the fact my fever cleared before I was admitted, they gave me a dose of antibiotics (which was promptly stopped on the ward whilst they checked the nature of my potential infection) and another six days in hospital followed, just to be safe. I ended up being clear of an infection, it must’ve gone on it’s own.

At some point during this stay I was weighed again, I had lost 7kg, or to put it another way nearly 10% of my body weight in a couple of weeks. I used this as an excuse to eat lots of meat and cake long into my recovery!!

However, to say I was bored/ fed up/ couldn’t stand the gluten-free hospital ‘food’ by this stage is to put it politely. Thankfully, Amy had been bringing me sandwiches, soups and all sorts. And ultimately, I realised by this stage that it’ll take as long as it takes, recovery was going to be slow, very slow, and there was only a certain amount I could do about it.

That’s not to say there haven’t been frustrating points where I felt like I couldn’t do anything (there have been so many!). Nevertheless, when I was finally discharged again, I was very thankful to be going home again to home cooked food and frankly seeing the outside world and nature, there was definitely a lack of access to the nice outside places at the hospital.

The blockage and re-re-admission

A week later, I discovered the hard way how important managing my diet carefully during recovery was. I was meant to eat a low-fibre diet. But I failed just a week later. Desiccated coconut, even buried in a cake, is apparently my nemesis.

Two delicious, coconut ring cakes put me back in hospital with crippling stomach pain caused by a blockage. It turns out desiccated coconut doesn’t get digested at all and it clumped together to essentially create a cork in my still rather swollen small intestine!

We stayed at home into the evening, hoping it would pass but wondering whether it was worth going to hospital. However, the pain didn’t pass and at the point I threw up, we knew it was time to go to A&E.

By the morning, the pain and the blockage had passed. It all happened pretty suddenly when I arrived back where it all began at the surgical triage unit (STU), waiting to be placed on a proper ward. In the end, I was only back in hospital for a couple of nights, but lesson learned! I was very, very careful with my diet over the next few weeks and months.

Let me out!

Since that desiccated coconut incident, I’ve been slowly making my way back to ‘normal’. Whatever that means. I ran a 5km Park Run at the end of November (yes I was doing Movember, thanks Amy for the photos!), before being told I shouldn’t be running by my district nurse I was visiting for the many bum wound re-dressings, ooops!

And since, I’ve been slowly building my strength, and recovering. Writing this seven months on, I’m now fully recovered, but it has taken most of this time. My last wound has literally only just healed this week, 225 days, 32 weeks or seven months later. Not the 2-3 months I had (pretty unrealistically) hoped for. It’s something we both wished we were told at the outset, how long it would take for everything to be completely healed. I’ve started running again, squatting again, sit-ups again.

This has been incredibly frustrating at various points along the journey. But I would say for anybody going through major surgery, don’t expect to get back to your ‘normal’ self quickly. Take your time. You’ll get there, just keep working at recovery, slowly but surely. And remember it’s just a blip in the journey that is your life.

That being said, having a stoma itself will not going to stop me doing anything. So surfing, stand up paddle-boarding (SUP), running, and of course plenty of photographing here I come! I am absolutely happy with the choice we made, a stoma is definitely the right choice for me. It became ‘normal’ very quickly and now I’m fully recovered it really is just my ‘new normal’.

In the next blog in this series, I will talk about the emotional and mental challenges in preparing for my new ‘normal’ but also how I feel it has changed me for the better and actually been a strangely positive experience.

In the meantime, would love to hear from other people that have been in a similar situation, so please do leave a comment or get in touch if you would like to!!


Part 3: How to prepare for a ‘new normal’

As I sit down to publish this it was Pete’s first birthday a week or so ago. My first stoma-versary – yeah, that’s a thing. A birthday for my stoma. He’s got a name, so therefore he’s got a birthday.

Whilst I’m not going to pretend this journey was an easy one, or one I would choose or that it’s been all sunshine and rainbows, I feel mentally it’s actually had a positive impact on my life. That is absolutely not a sentence I thought I’d be writing during the summer of 2018 when I was first diagnosed. So what do I mean by that?

The Beginning – Getting my mind right

How do you prepare for life changing surgery or any other major life change for the matter?

That is a very good question. And not really one I feel I, or anybody can answer. It will be different for everybody and there is absolutely no real one size fits all answer.

You’ve got to understand and accept, it’s not going to be easy. It absolutely wasn’t for me. But if you can get your mind right, it can really help with every aspect of your life and not just something as life changing as surgery.

When I write the words ‘get your mind right’, I can’t help but think of the song ‘Rejoice’ by Steve Angello, it’s probably been my most played song over the last couple of years and has really helped me ‘get my mind right’. The lyrics (minus the religious bit) really resonate with me. Even when things are really tough, there’s always someone worse off, always someone ‘in the hospital begging for the opportunity you have right now’ and if you get your mind right you can get everything else right.

I didn’t feel ready before surgery. There were so many unknowns I think I would have been naive to believe I was mentally prepared.

Logical Understanding

But what does getting your mind right actually mean? It’s another super hard question to answer and will mean something different for everyone. For me, firstly I needed to really understand the reason for doing the surgery in the first place. Part of this came relatively easy for me. When I was at university, unfortunately my mum lost her battle with bowel cancer. The brutal reality of the situation is, if I wasn’t to have the surgery I could find myself in a similar position in 10 or 15 years time. And ultimately, I’d spend those years wondering when it might happen and freaking myself out about the smallest symptom that wasn’t really a symptom (we’ve all been there right?). So logically it became a simple decision. But that doesn’t make it emotionally any easier. No matter how much it makes sense, it’s still terrifying!

Emotional Understanding

In terms of coming to terms with it emotionally, for us it was really important to be in a position to talk about it with my friends and family, this made it much more ‘normal’. By the time my actual surgery came around we’d been talking about it with friends for months, we became so comfortable with the thought of it that it just became ‘normal’ and we’d laugh and joke about it and they even threw me a ‘Goodbye Dave’s bum hole party!’ – see the photos below including ‘BUMting’, one of our favourite cards – ‘Colon farewell Auf Wiederschen Good Night’ and the board game Poopyhead.

Throughout this process, I’ve realised we’ve got some amazing friends and family around me and that’s been so clear from talking about it. The support from you all has been incredible, so thank you. Talking about it openly has been incredibly helpful and I couldn’t have done it without you all. As well as being hopefully useful for other people, writing these blogs has had a really therapeutic effect on me.

Openness

Being open and talking it through was massively important. If people think it’s disgusting and aren’t willing to talk to you are they friends that are worth having? I was also amazed by the really supportive community on Instagram (I post over there about Pinkie Pete and life with a stoma as @pinkiepeteandme).

Being open and talking about it is a really liberating and amazing way to help you get used to the new normal. If you can get your mind to the place where it just becomes the ‘new normal’ then that’s a great place to be in before the surgery.

The benefit of facing adversity (and overcoming it!)

Life is full of challenges. They just keep on coming and that’s okay. You just have to be able to accept that and accept that things are going to get hard at some point.

To quote a book I’ve been reading ‘The Subtle Art of not Giving a F*ck’ (excuse the language!) “For many of us our proudest achievements come in the face of the greatest adversity. Our pain makes us stronger, more resilient, more grounded.”

I totally agree. He was talking about how people who went through the Holocaust and horrible things throughout WW2 but came out the other side feeling that the experience had caused them to become “better, more responsible and even happier people”.

I am by no means comparing what I’ve been through to what they had, but the principle is the same. It was a major traumatic life event and it has had a surprisingly positive effect on me mentally. I feel more confident, more comfortable in myself and less bothered by life’s trivialities and annoyances. I feel like I know I have amazing friends and family around me to support me through hard times. I feel like I know I can cope through that level of adversity. And those are really liberating feelings.

So what would I say to my 2018 self or to anybody about to embark on having a stoma for whatever reason? I’d say, think about the reasons you’re doing it. Think about what you’re going to do afterward. And think about taking one small step at a time – literally at first. I rushed myself at some stages of my recovery and that was a mistake. But just remember, in the grand scheme of things, this is just a tiny part of your life. It’s just a blip and you’ll look back on it and see how you overcome it. You’ll look back at your scars, and be proud of them, as proof that you can overcome some pretty major adversity.

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