Before stoma surgery

No matter what type of stoma you have, all the output from the stoma must be collected in a secure and convenient way. That’s where your stoma pouch comes in. These are designed to adhere to the skin on your abdomen around your stoma and collect the output.

The design of your stoma pouch will depend on whether you have a colostomy, ileostomy or urostomy. Your stoma care nurse or health care professional will show you which one is right for you, but the majority of stoma pouchs are secure and discreet. Nobody will know you’re wearing one unless you decide to tell them.

Ostomy pouch for a urostomy

After a urostomy operation, urine will come out through the stoma instead of the urethra. Unlike the bladder, stoma has no muscle to control the release of urine. That is why it is necessary to wear an appliance such as a pouch.

Ostomy pouch for an ileostomy or colostomy

After an ileostomy or colostomy operation, faeces will come out through the ostomy instead of the anus. Unlike the anus, the ostomy has no muscle to control the release of faeces or wind. That is why it is necessary to wear a pouch.

Stomas come in all different shapes and sizes, and normally protrude a little. Some people may have more than one stoma, depending on their condition.

Where will my stoma be formed?

If you have a urostomy or an ileostomy the stoma is usually created on the right-hand side of your abdomen, while a colostomy is usually created on the left-hand side of your abdomen.

Be sure to discuss the exact location with your stoma care nurse, as it is important that the stoma is adjusted to your body and your life conditions if at all possible, not the other way around.

What will it look and feel like?

The stoma will be bright red and may be level with the abdomen, slightly below or protruding above it. The stoma does not have any sensitive nerves, so it shouldn’t feel sore. It will feel like the tissue on inside of the mouth when you touch it – soft and moist. The area around the ostomy may have dips, creases or folds.

Changes over time

Your body changes over time and it’s likely your stoma may also change. Exercise, as well as losing or gaining weight can influence the shape of your stoma, as well as the area around it.

Some people may also develop an outward bulge. The size of a bulge can vary from person to person. If you develop a bulge, you may need to use supporting products or a different type of appliance that is more suited to your body profile.  

If a bulge does appear, or you have doubts about the appearance of your stoma or the area around it, you should contact your ostomy care nurse.

Will it hurt?

The stoma can bleed a little when being cleaned, especially in the beginning, but this is quite normal, and should stop shortly afterwards. After surgery, your stoma will be swollen to begin with, but will reduce in size over some weeks.

Will it smell?

A good-fitting stoma pouch should not smell. You would only experience any odour if the pouch isn't fitting correctly.

Your stoma nurse will, together with you, choose the best location for your stoma. It's important that it fits to your normal lifestyle, allowing you to move, bend and turn, free from restrictions.

Talk about the stoma site with your stoma nurse, and when the location has been marked, try to check and if you can see and reach it comfortably. If it feels very awkward, you may want to talk to your stoma care nurse about possible alternatives.

Waking up after surgery

As you wake up after the operation, you will probably be tired and a little disoriented. Try to remember that you are in very good hands and will have close guidance every step of the way.

You will already be wearing your first 'pouch'. Most likely this will be see-through, allowing the nurses to check it easily. If you prefer, you will soon be able to change to one that is not see-through.

Your stoma will protrude from your stomach, and it will be bright red. Because of the colour, some find that it "looks like it hurts". But on the contrary, there are no sensitive nerves in the stoma. The tissue is similar to the inside of your mouth, and touching it feels about the same – soft, warm and a little moist.

It is completely normal to feel self-conscious about your stoma at first. But remember that the doctors and nurses who take care of you have seen it many times and that their only concern is your well-being.

Don’t be alarmed by the tubes and drains

You could also have various tubes and drains attached to your body. While it might look a little overwhelming, this is just part of the normal post-operative procedure. Your nurse will be able to explain what all of the equipment is if you are concerned.

You may have an IV attached in order to give you pain relief, or sometimes they can be giving you fluids that you need until you are well enough to drink normally. Any drains will be there to remove fluid/ blood that are left over from the surgery. These will all be removed before you go home.

Adjusting at home

When it is time for you to leave the hospital it is a good idea to make arrangements with friends or relatives, if at all possible, to be available for support in the first few days after your coming home.

While in hospital, you will receive training from your stoma care nurse. But if possible, it is often helpful to involve your partner or another close relative in the training. This will make it easier to continue your training at home.

Urostomy

Your stoma will begin to work immediately after your urostomy operation. The tubes that will be placed in the urostomy will be left until everything functions normally, usually after seven to ten days.

Your urine could be quite red at first, but don't be alarmed – it will soon return to its usual colour. There will likely also be mucus in the urine from your stoma; this is simply part of the 'lining' of the intestine and is nothing to worry about.

Within a few days, your stoma will begin to work. At first, the output will be quite watery, and there could be strong smells and some noisy wind from the stoma because your bowel has been inactive for a while. This will settle as you get up and about and start eating more again.

In the beginning, you might feel a need to go to the toilet as you did before – but the urge will disappear over time. If your anus is still present there may be some mucus discharge from it.

You may worry that you will be seen as different because of your stoma, and may quite naturally feel uncomfortable talking about it.

However, in most cases, your friends and family will just be feeling concerned about you and are interested to hear how you are feeling.

Sharing your story with those who care for you and allowing them to help, will make things much easier on yourself. Most people will be happy to give you help and will only feel pleased that they can support you.

Initially you may feel strange and awkward. however, before you know it, you will have incorporated your routines completely into your everyday life and, importantly, will be back doing everything you did before surgery.

So in the early days, try to allow people the chance to support you - you may well be able to return the favour in the future.

They don't teach how to act around someone with a stoma in school, so try to recognise that it is a new situation for your friends and family as well.

They are looking for ways to help you, but are probably struggling to figure out where the boundaries are, how many questions they are 'allowed' to ask – and how.

Talk to others who share your experience

While many find comfort in talking to their family or close friends, it can also be tremendously helpful to talk to someone with similar experiences about life with an ostomy. Ask your stoma care nurse if it might be possible to put you in contact with others in your situation.

I didn't want a bag. I never wanted a bag. When I was diagnosed with Crohn's at 19 years old, a bag wasn't even mentioned. Four surgeries later, it was brought up as a possible option, which I completely disregarded.

Right through my twenties, as I had one operation after another, I pretended to myself I would never have 'that' surgery. I met at least three people with bags during that time. All women, all on the same ward, all praising their new lives with bags.

I listened to them, I shared their joy in their new ways of being, and I thought, 'yeah, but you're still here in hospital having more operations aren't you, so what was the point of that?'

I became a cheerleader for not having a bag. Look at me – I've got hardly any colon left, but I still poo from the same place 'normal' people do. Ha!

How one meal changed everything

Then, when I was 26, and living with the man I now call husband (because I married him), I ate something I shouldn't have – well, I ate Chinese at a place that swore it didn't have any MSG in its food – and spent many hours throwing up, no hours pooing, and finally woke my then boyfriend and told him he'd better take me to the hospital.

My stomach was hard and distended, and I knew this meant more surgery. I also knew it meant something else – something I'd been sticking my fingers in my ears and singing 'la la la' about for way too long.

At the hospital, my surgeon was called from his bed some miles away to attend to me, and on his arrival, he held my hand, looked me in the eye and said, 'you know what this means, don't you?' I did.

A stoma care nurse came into my cubicle, told me I could still shower, still swim, and still have sex, asking if there was anything else I needed to know. I shook my head, mutely – that seemed enough for now.

Then she asked if I had a partner. I nodded. 'Will he be able to cope, or will he leave you?' she wanted to know. I squeaked that we'd discussed it and I was pretty sure he'd stick around – though he had been a while parking the car, now I came to think about it.

He showed up a couple of minutes later and she thrust a handful of books at him, saying that I was about to have a bag and wouldn't have time to read the literature, but he'd be able to while I was in surgery. And then she was gone. My first experience of a stoma care nurse.

Where’s my bag?

When I woke from that surgery, I put my hand to where the 'x' had been marked on my belly. Even after anaesthesia, I remembered exactly where that had been. There was nothing there. No bag. I asked the recovery nurse where my bag was, and she put my hand on to the other side of my abdomen.

I was confused for a moment – why wouldn't they have put it where I'd wanted it to go? Then I realised the bag I was touching was a familiar one; it was a wound drain. I still didn't have a bag.

Out of options

After that, I was the standard bearer – I had ten centimetres of bowel left, and no bag. Yay me!

For another twenty years that was the case. For the last four of those, I was mostly in bed, crippled with Crohn's and all its associated complications, crawling to the toilet up to 29 times a day, my anus screaming and raw, and my boasting of not having a bag started to feel a bit empty.

A tad pointless. So I told my GI Consultant I was ready. He'd stopped suggesting a bag long ago, I'd always thought I'd die rather than have one, but finally I knew I was out of options. I was in my forties, married with a teenage son, and I really wanted to be out of pain and out of bed.

One hell of an improvement

In September 2010, I woke to find an ileostomy pouch exactly where my 'x' had been marked. I couldn't have been happier.

Nearly four years later, I have never had a moment of wishing I didn't have a bag. Sometimes I feel sorry for people who still have to poo the old-fashioned way; it seems so primitive, somehow. Why do that when you could have the superior waste system we lucky few get to enjoy?

I suppose if you only go once a day, it's not an issue, but in my world, it's one hell of an improvement.