building a new relationship with your body after life-saving, life-changing surgery

It’s vital when you undergo life-saving major surgery that alters how your body works and/or its appearance to build a new relationship with your physical self. 

It’s not easy, though, harder for some maybe than others, but it’s even harder in the long run to keep holding strong negative feelings about any part of you that’s been changed to enable you to live.

I’m resuming my client work in July, having suspended work while I underwent and recovered from major surgery on 15 May that has not only saved my life but altered how my body looks when I see it in a mirror, and how it works from now on. 

I was diagnosed with Diverticular Disease in 2020 and it got more and more impactful as time went by. It goes unnoticed by most people who have it, and most people in the West will have it by the time they’re in their 80s, but it can affect you at any age. When it flares, it’s known as Diverticulitis and becomes very painful and disruptive. 

My disease progressed to late 2024 and became what’s called Complicated Diverticular Disease – a full-on inflammatory bowel disease (IBD). This is quite rare. Colitis and Crohn’s are the other two well-known forms of IBD. 

Complicated Diverticular Disease wrecked my large bowel, where the sigmoid colon is found. I was rushed to hospital in December last year and spent two days having tests before being fast-tracked with significant ongoing blood loss, largely unseen, malabsorption of food and drink, and pain. So much pain. I almost married my hot water bottle and could only take paracetamol. 

I won’t detail all the symptoms, but they’re severe. It was never going to get better. I’ve had 90% of my large bowel removed, my transverse colon across the top remaining and exiting through the tummy, eradicating the disease because where it affects people isn’t there in me anymore. I also had to have my bladder separated from my sigmoid colon by my wonderful surgeon before the sigmoid colon could be removed. They had joined together, thanks to chronic inflammation. This procedure meant the bladder had extensive stitching to repair it, and it was bypassed for three weeks.

In all that time, a combination of stoma and catheter meant I didn’t use a toilet for anything. That felt odd. It was odd. What proved to be two extensive and complex surgeries in one took a total of seven hours in the operating theatre. 

I have a permanent stoma now – that means my remaining large bowel, the aforementioned transverse colon exits on the left side of my abdomen. It’s not horrific like people who don’t have them often think, and it’s common to fear ever needing one. What remains of your food is diverted from its usual pathway that doesn’t exist anymore out of the body.

The little bit of you from the inside that makes an appearance in the outside world is small, the colour of the inside of your mouth, has no feeling when touched (but it’s best to not touch it). It’s not meant to be on show and is vulnerable when relocated.

This calls for care and consideration of your own self in a new way. You are able to maintain a new and hygienic, not at all nasty, way of processing and getting rid of your food waste into bags that are amazing marvels of modern medical technology. 

Leaks are rare. I’ve yet to have one. I may never. The bags attach with skin-friendly adhesive, which doesn’t come off until you use a removal spray. I use a new bag every day, sometimes two. There’s no fixed rule; we are all individuals. They’re waterproof, so you can shower, swim, bathe, do most anything you want to. They don’t get in the way of intimacy with partners and can’t be seen unless you show people who are curious. It’s all enclosed, so being asked to show someone what your stoma bag looks like is a far cry from showing your butt. It’s more like showing off a svelte handbag! I use black or white bags. You can get covers for them. They’re not necessary but can support confidence and personal expression with artistic designs. 

I have an aversion to the pink-flesh-coloured ones, but others won’t have an issue. I just don’t like that colour. I also think it’s really bad that for those who do want flesh-coloured, there are no brown or black variations as far as I know. There’s no excuse in 2025. 

I love my stoma. I set out to love it, to actively choose gratitude for the freedom and safety it brings to my life. I can eat what I want without fearing consequences now. My skin feels brighter and clearer. I even think there’s a modest improvement in my eyesight. Things are brighter and sharper. I have so much energy and no more chronic fatigue or pain. It has had a huge emotional and psychological impact – of course – but so did the preceding illness (more so, actually) that made the surgery urgently necessary, or my bowels were going to kill me one day. 

I cried during my recovery, my chemical self all over the place due to the traumatic rearrangement of the body, despite morphine that had me seeing things, but not once did I weep because of the stoma. You’re encouraged to name them, the idea being that it helps you gain acceptance and integrate it into yourself. It helped me.

What I’ve had done is called a colostomy but, because only a tiny amount of the large bowel remains, mine is almost but not quite into ileostomy territory – which would have involved a stoma higher up the body and even more removed. I can eat like a teenager in the sense that I’m unlikely to gain weight as easily as some others who, like me, are middle-aged. I lost quite a bit of weight, actually, 7.7kg (1st 3lbs) in the first three weeks, which is no cause for alarm. I’ll stabilise but I’m told to eat foods I avoided because of their salt, fat and sugar content – precisely to now take on that salt, fat and sugar!

You don’t have as much processing power – or as much pipeline through which your food has its good stuff extracted all the way along. My food leaves the factory too soon for all its components to be utilised. It never reaches the packing stage, which was what the sigmoid colon was responsible for. The salt apparently slows the transit of food through the bowel – and so, the longer it stays, the bowel that remains can extract more. 

All of this and more information about a strange new personal configuration can overwhelm and scare. I felt that myself. But I heard another patient one night, shouting, “I hate my stoma!” and could understand while hoping they would be able to move past that statement as they healed. Some stomas are temporary, so one imagines you don’t need to feel good about it, it’s going away at some point with a reconnection surgery, the bowel simply being rested. But my stoma is permanent, many are. There’s no reconnection possible. There’s nothing to reconnect to. The choice is to accept and work with the change, or hate and resent it. I don’t see the point or any purpose in the latter. 

I wasn’t about to waste time hating that which can never be changed. There was also no way I was going to hate the thing that gave me life back and removed the risk of it ending prematurely.

One way of seeing what I’ve had done is to recognise it as an internal, unseen amputation but one that doesn’t leave you entirely without functionality. It’s just redirected and modified, but the work still gets done and the essential usefulness remains. There is grief, though. For all I made great effort to maintain a positive view of the surgery, I had to recognise there was loss and bereavement involved as well.

I can’t wait to get back to the work I love. All that we experience as counsellors in our lives supports the expansion of our knowledge and informed understanding. I hope to be able in the future to maybe have opportunities to be of help to others working to come to terms with their own life-changing surgeries, by listening to what they say as always, and being able to fully appreciate the challenges and emotional turbulence clients may share in confidence with me. 

My full physical restoration will take more than a year, and even at twelve months I will have achieved 80% abdominal integrity. Not 100%. I cannot lift in all that time anything heavier than a kettle. I can’t bend to pick things up off the floor. I’m to do all I can to avoid sneezing, coughing, vomiting, all of which means it’s masks in public indoor spaces for the next year. I should seek to avoid contracting colds, flus, Covid-19, and norovirus.

These restrictions and required cautions are going to be the sustained challenges, not the bag changes that take only a few minutes. But I will rise to the tasks, find workarounds where I can, use assistive technology such as grabbers, ask for help when needed. My therapeutic training and experience have, without a doubt, really helped me. I’ve also challenged myself at times, because losing some measure of independence was, no pun intended, a real gut punch. It returns, piece by piece, day by day.

Sometimes it’s important to actively choose the path of acceptance and celebration, to go beyond our upset in the moment, because not doing so would hinder our recovery and rob us of precious time to feel good in and do great and fun things. But we can and should acknowledge and give voice to darker thoughts, though, safely, when sat with a counsellor we trust to hold what we say and stay with us without judgement while we process our difficulties. In doing that, in using the power of the therapeutic relationship, we can find our way towards where it is we need and want to be. 

Get in touch with Xander for a free 30-minute initial assessment and to work out a fee that’s right for your circumstances should you decide to proceed further. Xander has spaces currently available to welcome new clients.

Xander, trading as xph therapy, offers integrative counselling, which means working with multiple therapy types, including CBT, psychotherapeutic and person-centred to develop a therapeutic pathway just for you, whatever outcome you’re hoping to achieve.