Stoma surgery what to expect

24 May 2022
Straight after surgery in high dependency
Straight after surgery in high dependency


Stoma surgery what to expect

Clare Mee offers her insight into what to expect when going into hospital for stoma-forming surgery.

Everyone who has stoma surgery has a slightly different experience, but there are many similarities between most procedures. Some are planned, some are emergency and some, like mine, are somewhere between the two. I hope that sharing my story will give others an idea of what they might expect and offer some reassurance about what can be a daunting experience.

The lead-up

I had been unwell with ulcerative colitis for quite a few months before my operation. This meant all the awful symptoms that go with inflammatory bowel disease (IBD), such as diarrhoea and pain. At first, I was told that I wasn’t really ill enough for hospital treatment, but eventually the symptoms were getting much worse, especially because I started to have trouble urinating, as well as blood loss, so my husband had to take me to hospital.

I was put under the care of the surgical team they decided I needed urgent surgery the next day, and because of complications I didn’t come back out for another 10 weeks.

The night before surgery, I was lucky enough to see a specialist stoma care nurse. The nurse talked me through a few leaflets on life with a stoma. They also took the time to site my stoma by marking where on my tummy would be the best place for me to have a stoma.

Before going to sleep, I had a cannula placed in my arm to allow the hospital team to draw blood or give medication without using a needle. This was placed in my arm, although it may go elsewhere if you have difficult veins. It isn’t a great feeling to have it put in, but it was fine once it was there. The removal wasn’t too uncomfortable either, especially as they pressed down with some cotton wool.

That fateful morning

In the morning, my family came to see me as I was waiting for the porter to take me down to theatre. This was a nerve-racking wait. As I spotted a porter walking towards my bay, I knew deep down that they were coming for me. The porter led me to the lift with my husband, which was as far as he could come with me. From then on, I was on my own.

The porter was rather chatty, which helped me with my nerves. I was taken to a holding area outside the right theatre, ready to go in. It was eerily empty, with only the odd doctor or nurse walking past. Evidently, no one else was having surgery that Sunday at that time.

There, I was told that the surgical team first had to make sure they had blood available that matched the antibodies in mine. Apparently, these antibodies, which can be picked up from a transfusion or even pregnancy, are harmless, but doctors need to know about them in case you need blood. This took a long time, and the longer it took, the more nervous I became. No one came to see how I was holding up, which was not very well! My family had no idea about this wait. They assumed I was having surgery the whole time, which left them watching the clock and worrying that something had gone wrong.

Eventually, I was wheeled into the pre-surgery room, where there were five or six people waiting for me. This was a lot more than the one or two I had become used to, even in my very unwell state. I had never been into theatre before, and that terrified me. I was sat up so that I could be given epidural pain relief, which would last for the next few days. The last thing I remember was asking for a sedative to help me deal with the anxiety, and then being given something that just knocked me right out.

Waking up and recovering

The next thing I remember was waking up somewhere new. I was told that I was in the high-dependency unit, and I would probably need to stay there for a few days. This was because my poor health and nutritional state going into the procure meant that things could go wrong in the early days. Before the operation, the surgeon had let me know that I would probably need a few days of extra care.

I soon found I had a nasogastric tube coming out of my nose. This was probably the most uncomfortable thing, and I couldn’t wait to get it out. However, I could live with it for the time being; it was there for a good reason, to stop me being sick and to collect the nasty stuff from my stomach. I also had a central line in my neck, which allowed the hospital team to easily give me drugs and or take samples of my blood. This one was okay; it was painless. The nasogastric tube came out after about 3 days, then the central line a day later, and I was moved onto the ward.

All this time, the epidural pain relief meant I didn’t feel a thing, and it was actually quite nice. Eventually, I had to transition from epidural to intravenous pain relief. This briefly became quite painful while I waited for the latter to kick in. Once it did, I was sorted, and it felt good.

I did start to itch and noticed a rash at the morphine injection site. It took a while for anyone to suspect what it was, but then I tried switching to morphine by mouth. This was fine, and it actually tasted quite nice.

Top tips to prepare for stoma surgery

    • Ask about the recovery process

    • Take plenty of underwear with you

    • Take loose clothes to come home in

    • If possible, chat to someone who has had the same surgery

    • Learn about the surgery beforehand, to have an idea of questions to ask

Top tips to support a family member having stoma surgery

    • Make sure they are eating and drinking well

    • Educate yourself fully about caring for a stoma, just in case you need to help

    • Treat the ostomate’s stoma as a normal part of their body and be mindful of their feelings when you react to it

    • Offer to help with bathroom needs

    • Listen and be caring

    • Don’t rush a new ostomate, as it can take a while to recover from surgery

    • Provide lots of mental and physical encouragement

    • Know who to contact in case of issues or emergencies



Difficult complications

Most of the time, stoma surgery goes off without a hitch. However, my surgeon’s concerns about how unwell I was before surgery were borne out, and I experienced quite a few difficult complications as I recovered.

Things took a turn for the worst when I had a rectal stump blowout, where the stitches holding the rectal stump closed burst open, allowing bacteria to spread and making me very ill with pelvic sepsis. Then my surgical scar opened up from the bottom of it, and I had to have it packed for 6 months while it healed—which it did, but there is still a dent where that happened.

At this time, I wasn’t eating well, which meant I had to have a nasogastric feeding tube to take nutrition through my nose to my stomach. I was awake when I had it placed, which meant I had to overcome my gag reflex. This was difficult at first, but I managed by guzzling water at the same time, which helped a lot.

Most of these issues are in the past, and I have recovered. However, some are still affecting me. I have had an ongoing problem with fistulas, which are abnormal connections between two organs, and am having to have some major surgeries to close them.

Again, I am reassured that all these things are very rare and likely happened to me because I had been so ill before my surgery. In any other state, recovery would have been a much easier process. However, I was dealt the hand I was dealt, and I am grateful to have made it through.


On the ward after the high dependency unit


When I was successfully discharged, I knew that I had received great care at my hospital. I had some amazing nurses on the ward, who were very kind and caring, and I am so thankful and feel very lucky. My stoma nurse was also amazing, and we are still in touch.

It took me a few weeks to get used to caring for my stoma, as most of the time I was too ill to move, but eventually I got used to it, and now it’s just second nature. I remember the first time I saw my stoma; for a moment I was very scared, but after only a minute or two I was more fascinated.

My main piece of advice is for other people going for stoma surgery to be their own advocate and get the treatment that is right for them, which may mean not taking no for an answer. 

Nasogastric feeding tube for the night

Emergency or planned

Sometimes people need a stoma as an emergency. If someone has been in a serious accident or has been diagnosed with cancer, stoma formation can be a matter of life and death. Surgeons will want to get the person on the table as soon as possible, and there may not be time for as much discussion, planning and preparation as would be ideal. People who undergo emergency surgery may not learn how to care for a stoma, or even what one is, before they wake up with one. This can present a few challenges, but it’s usually a life-saving necessity.

Other people have the luxury of planned surgery. People living with inflammatory bowel disease (Crohn’s disease or ulcerative colitis) often spend years trying different drugs to get their symptoms under control and weighing up the possibility of surgery as a radical alternative if medical management doesn’t work out. By the time they agree to surgery, they may have learned a lot about life with a stoma from other people with a similar condition.

What’s more, they may be among the many people to wake up with a stoma, find they’ve got their life back and wonder why they didn’t agree earlier instead of struggling so long with ineffective drugs and debilitating bowel symptoms. Planned surgery may also allow for a specialist nurse to site the stoma, which involves recommending the ideal place on the individual’s belly for it to be.

Clare Mee lives in Nottingham and blogs about life with an ileostomy