Coming home after stoma surgery was when the real adjustment began. In hospital, recovery had structure, nurses, routines and support. At home, I had to learn how to live with a changed body, surgical wounds, weak stomach muscles, a stoma bag, leaks, bag changes, body confidence, mental health wobbles, and the strange feeling of not quite recognising myself. This part of my story is about adjusting to life with a stoma after surgery — not perfectly, not instantly, but slowly, honestly, and one small milestone at a time.
This follows on from Part Six, where I shared what it was like recovering after stoma surgery for ulcerative colitis — waking up in pain, learning to walk again, meeting my stoma, emptying my bag, and finally going home.
Read Part Six here:
Stoma Surgery Recovery After Ulcerative Colitis
PART SEVEN – LEARNING WHO I AM NOW
Coming Home After Stoma Surgery
Chapter 42: Recovery Isn’t a Finish Line
Leaving hospital didn’t feel like the end of the story. In some ways, it felt like the start of a completely different one.
When you are in hospital, everything is structured for you. Medication comes at certain times. Nurses check on you. Doctors appear. Meals arrive. Someone is there if something goes wrong. Even when it is hard, and even when you are desperate to go home, there is a safety net around you.
Then you leave.
Suddenly, you are back in your own house with this changed body, a stoma bag, surgical wounds, weak stomach muscles, and a list of things you are not allowed to do. You are expected to rest, recover, learn, heal, and somehow return to normal, except normal doesn’t really exist in the same way anymore.
The first week back at home was tough. Not necessarily dramatic every second, but difficult in the small, practical ways that wear you down. Things I had always taken for granted were suddenly hard. Sitting up was difficult because my stomach muscles were so weak. I couldn’t just move how I wanted to move. I had to think about everything before I did it.
Sleeping was awkward too. I couldn’t sleep on my side, which was a massive annoyance because I’ve always found it hard sleeping on my back. Something as simple as turning over in bed suddenly became something my body wasn’t ready for.
I also couldn’t fully sit up unaided without either pulling myself up or needing someone to help push me. That is a strange thing to deal with mentally. One minute you are an adult who can do everything for yourself, and the next you need help with the most basic movements.
I couldn’t lift anything heavier than the kettle either. That was frustrating enough on its own, but because I suffer with OCD, not being able to clean the house properly drove me mad. With seven of us in the house, it doesn’t stay clean for long, and having to sit there looking at things I couldn’t sort out was really hard.
I also couldn’t bend down to pick anything up from the floor, and you don’t realise how often you do something like that until you can’t do it anymore. Dropped something? Normally, you just pick it up. After surgery, it becomes a whole situation.
But my biggest triumph in those early days was the stairs.
At first, getting up and down the stairs was a slow process of one foot in front of the other, pitta-patting my way up and down while either holding onto my beloved’s arm or clutching the bannister like my life depended on it. Generally, I tried to avoid the stairs unless it was really important.
Then little by little, I improved.
Eventually, I could walk up and down holding on only with my fingertips, one foot on each step. That might sound like nothing to someone who hasn’t been through major surgery, but to me it felt massive. It gave me such a sense of pride because it proved I was on the mend.
Recovery wasn’t dramatic. It was slow, uneven, and full of tiny milestones that wouldn’t have meant anything before. But each one mattered.
And regardless of everything I still couldn’t do, one thing was already clear.
I could now live a life without colitis pain.
Body Confidence After Stoma Surgery
Chapter 43: The Body I Didn’t Recognise
Living with a stoma is one of those things you don’t truly understand until it is part of your own body.
Before surgery, I had an idea in my head of how it would work. I thought the bag would fill up, then you would take it off and put a new one on. Simple enough. That was my impression before having the ileostomy.
It turns out that isn’t really the case.
If I changed the bag every single time it had output in it, my skin would be destroyed from constantly sticking and unsticking the adhesive. Instead, I had to learn that the bag is emptied regularly, and then changed separately when needed. That might sound obvious to someone who already lives with a stoma, but before you have one, the whole thing is completely new.
At first, I was just trying to get my head around the practical side. Emptying the bag. Cleaning the skin. Changing the bag. Preparing everything properly. Making sure I had the right supplies nearby. It is amazing how quickly your bathroom routine becomes a full setup.
I needed a new stoma bag, a waste sack, dry wipes, adhesive remover spray, and warm water. The process itself was simple enough once I got used to it, but at the start it felt like a lot. You spray the adhesive remover, gently peel the bag away, clean the stoma and surrounding skin, make sure everything is dry, then position the new bag over the stoma and stick it down properly.
There is a strange moment when the bag comes off and you are faced with your stoma properly. In hospital, everything still felt medical. At home, it felt more personal. This was no longer nurses helping me through it. This was my body, my bathroom, my routine, and my responsibility.
I didn’t hate my body, but I didn’t fully recognise it either.
There were scars. There was a stoma. There was a bag attached to my stomach. There was a body that had clearly been through something massive because it had. I was grateful that the colitis pain had gone, but gratitude doesn’t automatically mean instant confidence.
Getting dressed took more thought. Clothes that once felt normal suddenly felt different. I became aware of where waistbands sat, whether the bag would show, whether it would rustle, whether it would fill, and whether other people could notice it. Most of the time, they probably couldn’t. But I could.
Confidence didn’t return overnight.
It had to be rebuilt slowly, one bag change, one outfit, one mirror glance, and one normal day at a time.
Learning to Trust My Body With a Stoma
Chapter 44: Learning Trust Again
Trusting my body again was probably harder than learning the practical side of the bag.
For years, my body had betrayed me. It had ignored warning signs, failed without notice, and put me in situations where I felt humiliated and completely out of control. So even after surgery, even after the diseased colon had gone, my mind didn’t instantly catch up.
I still waited for something to go wrong.
A leak. A blowout. Pain. A strange feeling. A noise. A smell. Any tiny thing could make my mind jump straight to panic because that was what ulcerative colitis had trained me to do. For years, a stomach sensation could mean danger, so it took time to learn that every unfamiliar feeling didn’t mean disaster.
Emptying the bag at home was one of the first big learning curves.
In hospital, I had emptied it into a sick bowl with a healthcare assistant, and then they took it away. Simple. At home, I tried to replicate that, but it turned out to be more trouble than it was worth. I grabbed an old Tupperware box, emptied the contents of my bag into it, then emptied that down the toilet.
The problem was then I had to clean and bleach the box, which meant putting faeces near the sink, and to be honest, it didn’t feel hygienic at all.
So the next day I tried a different approach. I got down on my knees in front of the toilet, almost like the being-sick position, and emptied the bag straight into the bowl. At first, I thought I had cracked it.
Eureka.
Or so I thought.
Then came one serious schoolboy mistake.
I got into position, undid the bottom of the bag, aimed it straight into the water, and whoosh. The contents were like liquid and gushed into the bowl, hit the back, and fired straight back up at me.
I was literally covered in shit.
There was shit on my jumper, shit on my face, and shit on the walls. The worst thing was I couldn’t even open my mouth properly to shout for help. I sounded like a gagged hostage trying to call out, “Babe, help, help, there’s shit everywhere!”
Luckily, we have an amazing sense of humour in our house. When my partner came to my rescue, we were able to see the funny side of it, even while she helped clean me up and chuckled at the absolute state of me.
That moment taught me two things. First, stoma life involves trial and error. Second, you need humour. You really do. Without humour, some of these moments would feel unbearable. With humour, they become part of the learning process.
From then on, I became much more cautious about how quickly I released the contents of the bag. I tried emptying it while sitting on the toilet, but that didn’t really feel like the method for me either because things could get in the way. Eventually, I found my own way of doing it, and that is what stoma life becomes in the beginning: finding what works for you.
Slowly, trust began to return. Not because everything was perfect, but because I kept dealing with each thing that happened. Every small problem I solved became proof that I could cope.
Mental Health After Stoma Surgery
Chapter 45: Mental Health in the Aftermath
Physically, I was improving, but mentally I was still trying to catch up.
That is something I don’t think people always understand about surgery. Everyone can see the physical part. They can see the scars, the weight loss, the slow walking, the bag, and the obvious recovery. But the mental side is quieter. It sits underneath everything.
I had lost an organ. That is not a small thing to process. Even though the surgery had given me freedom from ulcerative colitis, it still meant part of me had been removed. My body was different forever, and my brain needed time to understand that.
There was grief in that. Not just grief for my colon, because let’s be honest, it had caused me enough trouble by the end, but grief for the years that had been swallowed up by illness. The years of symptoms, medication, appointments, accidents, pain, missed opportunities, and plans that had been put on hold.
There was anger too. Anger at the disease, anger at my body, and anger at how much it had taken before surgery finally gave me a way out. Then there was guilt, because surgery had technically worked. I was pain-free from colitis. I wasn’t bleeding. I wasn’t having accidents. So part of me felt like I should just be grateful and get on with it.
But recovery doesn’t work like that.
You can be grateful and still feel low. You can know surgery was the right decision and still need time to process what happened. You can be relieved the disease has gone and still feel emotional about the body you now have to learn.
Over the next week, I tried to get my mental health in check. I decided to do some drawing and painting, partly for myself and partly to help educate other people. I wanted to get my own head around losing an organ, but I also wanted to show people what had happened in a way that might answer questions they were too shy to ask.
I drew a normal digestive system and then what my digestive system looked like after the ileostomy, with the colon removed and replaced with a stoma. It helped me make sense of it. It turned something frightening and hidden into something visible and understandable.
That was important.
Because the more I understood my new body, the less alien it felt.
Stoma Leaks, Bag Changes and Small Recovery Milestones
Chapter 46: Small Milestones Matter
After surgery, milestones look completely different.
Before, a good day might have meant getting loads done, going to work, studying, cleaning the house, or just living normally without thinking too much about it. After surgery, a good day could be something much smaller on paper, but much bigger in reality.
Walking a little further. Managing the stairs. Emptying the bag without panicking. Changing the bag with everything prepared properly. Getting through a day without a leak. Sleeping a bit better. Leaving the house and realising I wasn’t planning toilet routes anymore.
Those things mattered.
One of the big parts of early stoma life was learning that issues could usually be fixed. At one of my stoma team appointments, I was having problems with my bag leaking on the right-hand side. The faeces kept working its way out in the same place every time, and I thought it might just be something I had to deal with.
I found out the hard way that it could get worse and that no, it couldn’t always wait until morning. Let’s just say it involved showers all round and changed bedding.
At the appointment, the stoma nurse explained that I had a natural crease in my belly, and that was causing the problem. She introduced me to a ring that fitted snugly around my stoma before the bag went on. It also had medicine in it to help treat the slight rash around the stoma.
After a couple of days using them, the side leaks stopped.
That was a massive relief.
It showed me that I didn’t just have to put up with problems. There were products, adjustments, nurses, advice, and solutions. If something wasn’t working, it didn’t mean I was failing. It meant we needed to find the right setup for my body.
The stoma nurse also showed me that there were different types of bags I could try, so I took some samples away. That appointment felt really productive, especially because the nurse I saw also had a stoma herself. I thought that was awesome because she could relate through her own experience, not just from a textbook or training.
Those appointments helped me feel less alone and more in control. Every practical improvement gave me a little bit more confidence. Every solved problem made life feel wider again.
My world had spent years shrinking around illness.
Now, slowly, it was opening back up.
Talking About Life With a Stoma
Chapter 47: Talking About It
At first, talking about the stoma was strange.
I had spent years being embarrassed about bowel symptoms, toilet urgency, blood, mucus, accidents, and everything else that comes with ulcerative colitis. Then suddenly I had this visible thing attached to my body that was both deeply personal and completely life-changing.
It is hard to know how much to say.
You don’t want to make people uncomfortable. You don’t want to overshare. You don’t want every conversation to become about your body. But at the same time, pretending nothing had happened didn’t feel right either.
That was one of the reasons the blog became important.
I had hoped that documenting my experience might help one or two people through what I think is a traumatic experience, but also a metamorphic process. It felt like a second chance at life after living so long with a horrible disease.
What surprised me was the response.
Words cannot describe how proud people made me feel. The support I received in such a short period of time was incredible. I had thought maybe a few people would read it, maybe someone in a similar position might find it useful, but it became more than that.
People listened.
Some people asked questions. Some shared their own stories. Some admitted they had been struggling with things quietly. Others simply showed support in ways that meant more than they probably realised.
I also need to say something about friends and family, because they were incredible. They constantly checked on me, checked on Bex, asked if we needed shopping, asked if the kids were okay, and brought cards, gifts, and even cake. That kind of support is worth its weight in gold.
It made me realise that sharing honestly doesn’t have to mean shocking people or oversharing for the sake of it. Sometimes it just means being real enough that someone else feels less alone, or understands something they didn’t understand before.
That became a big lesson for me.
Talking about it didn’t make me weaker.
It gave the whole experience a purpose.
Finding Purpose After Stoma Surgery
Chapter 48: Finding Purpose in the Mess
The idea of going back to normal started to make less and less sense.
Normal had changed.
I wasn’t going back to the body I had before surgery. I wasn’t going back to the life I had before ulcerative colitis. I wasn’t going back to being someone who could ignore bowel disease or pretend it was something that happened to other people.
But that didn’t mean life was over. It meant I had to build something new.
That is where the purpose started to come in. I didn’t have all the answers, and I definitely wasn’t some finished version of myself who had everything figured out. I was still recovering, still learning the bag, still dealing with awkward moments, still working out what confidence looked like in this changed body.
But I had lived something that other people were frightened of.
I knew what it felt like to wait for surgery. I knew what it felt like to wake up with a stoma. I knew what it felt like to come home and realise you had to learn your body all over again. I knew what it felt like to have embarrassing accidents, practical problems, mental wobbles, and still keep going.
That mattered.
I kept studying. I kept moving forward. I kept trying to build the accountancy career I had started before everything collapsed again. But alongside that, I slowly started sharing more openly.
Not because I wanted attention.
Not because I thought I had all the answers.
But because I knew how lonely it could feel when you are the person searching online for reassurance, wondering what life might look like after surgery, or trying to understand whether you will ever feel like yourself again.
If my story could make someone feel less alone, then the mess had meaning.
The Stoma Isn’t the End of the Story
Chapter 49: The Stoma Isn’t the Story
The stoma changed my body, but it didn’t end my life.
That sounds obvious now, but before surgery, I don’t think I fully understood it. When you are unwell and surgery is looming, the stoma can feel like the whole story. It becomes the thing you are afraid of, the thing you imagine, the thing you practise with, the thing you wonder about when you look in the mirror.
But once you are living with it, you start to realise it is not the whole story.
It is part of you, yes. It changes routines, clothing choices, toilet habits, confidence, and how you understand your own body. But it doesn’t erase who you are. It doesn’t take away your future. It doesn’t stop you from being a partner, parent, friend, worker, student, or anything else you were before.
In my current thoughts at the time, I remember saying that after living life as an ostomate, it was honestly a walk in the park compared with how I thought it was going to be. That doesn’t mean it was easy every day, and it doesn’t mean there weren’t things I missed.
Because yes, there were things I missed.
I missed the simple relief of needing to fart and just letting it out like, “Ahhh, thank God that’s gone.” That might sound funny, but it is one of those tiny human things you don’t think about until it changes.
But compared with ulcerative colitis, accidents, pain, bleeding, steroids, emergency planning, and living in fear of my own bowel, the stoma gave me something back.
Freedom.
It took time to realise that fully, and it took time to feel comfortable saying it. But the stoma wasn’t the enemy. The disease was. The stoma was the thing that helped me live again.
I am not brave because I have a stoma. I am not inspirational just for existing with one. I am simply someone who reached a point where life had become unbearable and kept going when stopping would have been easier.
The stoma isn’t the whole story.
It is the reason the story got to continue.
Still Becoming After Ulcerative Colitis and Stoma Surgery
Chapter 50: Still Becoming
This isn’t a neat ending.
I think that is important to say because people often want recovery stories to have a clean finish. Illness, surgery, recovery, lesson learned, happy ending. But real life isn’t that tidy.
I was still learning. Still adjusting. Still becoming.
There were hard days, good days, awkward days, funny days, emotional days, and ordinary days. The ordinary days became the ones I valued most because for so long, ordinary had felt out of reach.
An ordinary day without bleeding.
An ordinary day without planning toilet routes.
An ordinary day where I could leave the house without the same fear sitting in my stomach.
An ordinary day where my body wasn’t controlling every decision.
That is what I had wanted for years.
My story didn’t end with surgery. It didn’t end when I left hospital, learned to empty the bag, climbed the stairs, or went to a stoma appointment. Those were all parts of the process, but they weren’t the ending.
Surgery gave my life room to continue.
And I was still working out who I was in that new space.
I wasn’t the same person I had been before ulcerative colitis. I wasn’t the same person I had been before surgery. But maybe that wasn’t a bad thing. Maybe the point wasn’t to go back to who I was before all of this happened.
Maybe the point was to become someone who had survived it, learned from it, and found a way to use it.
The Stoma Accountant didn’t come from a perfect story.
It came from pain, illness, embarrassment, surgery, humour, recovery, and the decision to keep talking anyway.
And even now, I’m still becoming.
Continue the story:
After learning to live with a stoma, I wanted to turn the experience into something useful for other people. Read A Call to Hope: what my stoma journey taught me.
Contact your GP or medical team
This is my personal experience of adjusting to life with a stoma after surgery, including home recovery, bag changes, leaks, body confidence, mental health and learning new routines. It is not medical advice. Stoma recovery and care are different for everyone, so always speak to your stoma nurse, surgeon, consultant or IBD team about your own recovery, supplies, skin care and mental wellbeing.
You can also read Crohn’s & Colitis UK guidance on life with a stoma.
Stoma supply organiser
A stoma supply organiser can help keep bags, wipes, disposal bags, sprays and spare supplies in one place, which makes daily changes feel less stressful and more controlled.
Why it helped:
✔ Kept all my stoma supplies together instead of scattered around the bathroom or bedroom
✔ Made bag changes feel quicker and less chaotic, especially while I was still learning my routine
✔ Helped me feel more prepared and confident knowing I had everything I needed in one place
👉 View Stoma Supply Organisers on Amazon
Bathroom Storage Basket
A bathroom storage basket can make stoma bag changes feel calmer by keeping everyday supplies visible, tidy and easy to reach when you need them.
Why it helped:
✔ Kept regular-use items like wipes, disposal bags, sprays and spare bags organised in the bathroom
✔ Made bag changes feel less rushed because everything was already within reach
✔ Helped turn a new and overwhelming routine into something that felt more normal and manageable
