Before stoma surgery

It's natural to have a lot of questions before stoma surgery. Having an operation is hard physically and can be an emotional experience. Being well prepared can help you to know what to expect. This section covers questions many people have on ostomy surgery as well as providing information on support and community. 

Stoma basics

Types of Stoma Types of Stoma There are three types of stoma related to the digestive and urinary system - these are: Colostomy, Ileostomy and Urostomy. Keep reading to find out where they are typically placed and what they are for. Stoma types

What is a stoma?


A stoma is an artificial opening that allows the flow of faeces or urine from the intestine or the urinary tract. There are three types of stoma related to the digestive and urinary system: Colostomy, Ileostomy and Urostomy.

It is usually the result of an operation to remove disease such as cancer, Crohn's disesase or Diverticulitis. It can also result from a bowel obstruction or injury to the digestive or urinary system.

 

Colostomy

ColostomyIn a colostomy operation, part of your colon is brought to the surface of your abdomen to form the stoma. A colostomy is usually created on the left-hand side of your abdomen. Stools in this part of the intestine are solid and, because a stoma has no muscle to control defecation, will need to be collected using a stoma pouch.

There are two different types of colostomy surgery: End colostomy and loop colostomy.

End colostomy
If parts of your large bowel (colon) or rectum have been removed, the remaining large bowel is brought to the surface of the abdomen to form a stoma. An end colostomy can be temporary or permanent. The temporary solution is relevant in situations where the diseased part of the bowel has been removed and the remaining part of the bowel needs to rest before the ends are joined together. The permanent solution is chosen in situations where it is too risky or not possible to re-join the two parts of the intestine.

Loop colostomy
In a loop colostomy, your bowel is lifted above skin level and held in place with a stoma rod. A cut is made on the exposed bowel loop, and the ends are then rolled down and sewn onto the skin. In this way, a loop stoma actually consists of two stomas (double-barrelled stoma) that are joined together. The loop colostomy is typically a temporary measure performed in acute situations. It can also be carried out to protect a surgical join in the bowel.

Ileostomy

IleostomyIn an ileostomy operation, a part of your small bowel called the ileum is brought to the surface of your abdomen to form the stoma. An ileostomy is typically made in cases where the end part of the small bowel is diseased, and is usually made on the right-hand side of your abdomen.

Stools in this part of the intestine are generally fluid and, because a stoma has no muscle to control defecation, will need to be collected in a pouch.

There are two different types of ileostomy surgery:

End ileostomy
An end ileostomy is made when part of your large bowel (colon) is removed (or simply needs to rest) and the end of your small bowel is brought to the surface of the abdomen to form a stoma. An end ileostomy can be temporary or permanent.

The temporary solution is relevant in situations where the diseased part of the bowel has been removed and the remaining part needs to rest before the ends are joined together. The permanent solution is chosen in situations where it is too risky or not possible to re-join the two parts of the intestine.

Loop ileostomy
In a loop ileostomy, a loop of the small bowel is lifted above skin level and held in place with a stoma rod. A cut is made on the exposed bowel loop, and the ends are then rolled down and sewn onto the skin. In this way, a loop ileostomy actually consists of two stomas that are joined together.

The loop ileostomy is typically temporary and performed to protect a surgical join in the bowel. If temporary, it will be closed or reversed in a later operation.

Urostomy


UrostomyIf your bladder or urinary system is damaged or diseased and you are unable to pass urine normally, you will need a urinary diversion. This is called a urostomy, an ileal conduit or a Bricker bladder.

An isolated part of the intestine is brought onto the surface of the right-hand side of your abdomen and the other end is sewn up. The ureters are detached from the bladder and reattached to the isolated section of the intestine. Because this section of the intestine is too small to function as a reservoir, and there is no muscle or valve to control urination, you will need a urostomy pouch to collect the urine.

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The digestive and urinary system The digestive and urinary system Understanding the digestive and urinary system will help you to understand how your stoma will function. The digestive system and urinary system
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The digestive and urinary system

The digestive system

The digestive systemThe stomach
When you eat, the food travels down a long, narrow tube called the food pipe into your stomach. Here, the food is churned into smaller pieces and your digestive juices turn it into liquid.

The small bowels
The journey continues as the contents of your stomach move into the small bowel (ileum), where digestion finishes. Your body absorbs the nutrients it needs for energy, growth and building new cells and channels these into the bloodstream.

The large bowel
When all nutrition has been absorbed, the remains move into the large bowel (colon), where your body absorbs more fluid to make the waste more solid. The muscles in your colon wall then push any waste forward into your rectum, where it passes out of your body through your anus, with the aid of the sphincter muscles, as stool.

Colostomy 

In a colostomy operation, part of your large bowel (colon) is brought to the surface of your abdomen to form a stoma (opening). A colostomy is usually made on the left-hand side of your abdomen, but may in some circumstances be on the right-hand side. When a colostomy is made on your abdomen it alters the usual way you go to the toilet to pass faeces. Instead of coming out through your anus, your faeces will pass through the stoma. The passing of faeces is usually controlled by a special sphincter muscle in the anus. However, the main difference for you when you have a stoma, is that you are no longer able to hold on to or have control over, when you need to pass faeces. You also do not have any control over when you pass wind or flatus. 

Ileostomy

In an ileostomy operation, part of your small bowel (ileum) is brought to the surface of your abdomen to form a stoma (opening). An ileostomy is usually made on the right hand side of your abdomen, but may in some circumstances be on the left hand side.When an ileostomy is made on your abdomen, it alters the usual way you go to the toilet to pass faeces. Instead of coming out through your anus, your faeces will pass through the stoma. The passing of faeces is usually controlled by a special sphincter muscle in the anus. However, the main difference for you when you have a stoma, is that you are no longer able to hold on to or have control over, when you need to pass faeces. You also do not have any control over when you pass wind or flatus. 

The urinary system

The urinary systemUrine is made by your kidneys and travels down two tubes called the ureters to your bladder. Urine is produced all the time, but it is stored in your bladder until you get a sense that you need to urinate. The urine then passes out of your body through the urethra.

Urostomy

When a urostomy is made, it alters the usual way you pass urine. A passage is made for urine to pass from your kidneys to the outside of your abdomen, ending in a small spout. This is called a stoma (opening).  Instead of coming out through your urethra, your urine will pass through the stoma. The passing of urine is usually controlled by a special muscle in the urethra. However, the main difference for you when you have a stoma, is that you are no longer able to hold on to or have control over, when you need to pass urine.     

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What does a stoma look and feel like? What does a stoma look and feel like? A stoma is usually moist and pinkish-red, and will stick out slightly from your abdomen. Stoma look and feel
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What does a stoma look and feel like?

After surgery, your stoma may be quite swollen to begin with, but will reduce in size over time – usually after six to eight weeks.

No sensation, no pain

A stoma is red in colour. This is because it is a mucous membrane, just like the mucous membrane inside your mouth. There is no sensation in the stoma, so it is not at all painful to touch.  The stoma can bleed a little when being cleaned, especially in the beginning, but this is quite normal, and should stop shortly afterwards.

Stomas come in all different shapes and sizes - some are quite short and sit flat against the belly, while some protude a little. Some people will have more than one stoma, depending on their condition. 

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Why do I need to wear an ostomy pouch? Why do I need to wear an ostomy pouch? An ostomy pouch is necessary to securely and conveniently collect the output from your stoma. Practical information about wearing an ostomy pouch
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Why do I need to wear an ostomy pouch?

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

Secure and discreet

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

Although it can be difficult at first to accept the fact that you will have to wear an ostomy pouch on your stomach, you should soon start to realise that it’s possible to live much as you did before.

Changing your pouch

How often you change or empty your pouch depends on the type of stoma you have:

  • Colostomy: The pouch needs to be changed between one and three times a day, depending on the amount of output.
  • Ileostomy: The pouch needs to be drained several times a day.
  • Urostomy: The pouch needs to be drained several times a day. During the night, a urostomy bag or a small urostomy appliance can be attached to a night bag so you don’t need to get up to drain your bag.
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How your stoma might affect daily life How your stoma might affect daily life It will take time to adjust to life with a stoma. But there’s no reason why it should stop you doing the things you already do, from sports to socialising. Daily life with a stoma
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Wondering how your stoma might affect daily life?

After your stoma operation you will need some time to recover. This is perfectly normal, and the time needed will vary from person to person. Your stoma will change in the first weeks following surgery, in terms of both size and output. Also, you might lose or gain weight in these weeks.

Getting started with a pouch
Having a stoma means you have no control over when you defecate or, in the case of a urostomy, when you urinate. This means that you always need to wear a pouch to collect your output.

Healthy skin
In order for your pouch to adhere properly, it is very important to keep the skin around your stoma healthy. When the pouch is attached correctly, there is no risk of smell from your stoma and less risk of skin irritation. Before you leave hospital, you will be trained in how to choose and manage your stoma pouch and how to take care of your skin.

What about food and drink?
In general you can eat and drink as normal. Try to see how your stoma reacts to different foods. Your stoma care nurse or surgeon will advise if you need to take special precautions.
In general, your stoma is no hindrance to working, socialising, playing sports, travelling or other hobbies. Your general state of health – physically as well as mentally – will play a big role in determining your quality of life as you move forward.

Talk about it
Talk about itNothing is more helpful than someone who really understands what you are going through. You are certainly not alone – the number of people with a stoma worldwide is 1.9 million. Local patient organisations and online support groups offer support through meetings and online chats, to get handy tips, inspiration and personal support.

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Preparing for life with an ostomy

Nicola The thought of having an ostomy is immeasurably worse than the reality. When I was pregnant with my second child, I knew that I had bowel cancer. You know your body, you know if something is wrong, and I knew. Read Nicola's story
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Nicola's story

When I was pregnant with my second child, I knew that I had bowel cancer. You know your body, you know if something is wrong, and I knew. This feeling combined with textbook symptoms and a basic knowledge of bowel cancer due to a strong family history (my mother, grandmother and great-grandfather all died from bowel cancer) left me convinced it was the only thing it could be. Even so getting a diagnosis was not as easy as it should have been.

I had been getting rectal bleeding on and off, since around 2006. Over the years I had visited various GPs but they always said the same, that I was too young to have bowel cancer and if the bleeding went, there was nothing to worry about. The bleeding stopped so I breathed a massive sigh of relief, swiped the sweat from my brow and went on in the blissful ignorance that not thinking about things like ‘your health’ brings. I now know that the bleeding was polyps in the colon which bleed intermittently and grow into cancerous tumors. With the benefit of hindsight this was the beginning of my body developing cancer cells and could have probably been dealt with in the early stages if my initial concerns and symptoms had been taken seriously at the time.

The rectal bleeding and pain became intolerable during my second pregnancy. After what can only be described as an argument with a GP, I was finally referred for a flexi-sygmoid (camera up the rectum) which is as pleasant as it sounds! I remember thinking that it would be the worst thing in the world and now I know that there are much worse things, like chemotherapy, so everything in perspective, people! Going into the hospital for the test was awful, but they found the cancerous tumor straight away and further tests were immediately arranged. I was far from a shocked when the consultant told me he had found a tumor and he believed it was cancerous. The consultant kept saying, I’m sure this comes as a massive surprise to you, I said, “no, not really”! The consultant was shocked, as was the nurse, they kept repeating that they had never met anyone my age with bowel cancer, it was unheard of, things like that. Well if you are going to have cancer, might as well make yourself a medical marvel at the same time! I ended trying to comfort them, was very strange, but if you have cancer you will probably find that looking after the person you’ve just told, happens a lot.

Further CT, MRI and PET scans showed the cancer was as advanced and severe as it could be without being terminal. My surgeon would later tell me she thought I had cancer for around 4 years (meaning through both my pregnancies) and if I had waited even another 6 months there would have been nothing they could do. It was so far spread that I needed what the doctors kept calling ‘radical treatment’. This included three months of chemotherapy, months of daily radiotherapy combined with chemotherapy. Followed by a 12 hour operation to remove a large part of the colon, all the surrounding muscle and tissue, the pelvic floor muscles, the rectum and the back wall of the vagina including surrounding muscle and tissue, all just to remove the cancer. Next they were removing my core stomach muscles on one side (I know I never had a 6 pack before but it’s kind of nice that I can blame this now!), threading them through my pelvis so a team of plastic-surgeons rebuild certain areas with that muscle. One of the many joys of having surgery to remove cancer is that is can cause cancer (one of life’s quirks) so surgery was followed by another three months of chemotherapy. Overwhelming? Yes. Do-able? Absolutely! I was determined to rid my body of this disease and actually couldn’t wait to get started, knowing every bout of chemo would be killing more of the disease.

The reality of my treatment wasn’t quite that positive. I found it impossibly hard and there were moments when I wanted to give up. I know there is no ‘good’ time to have cancer but I did feel particularly unlucky to have it with a 3 month and 2-year-old. I felt like I missed most of my daughter’s first year. After getting to spend every moment with my son when he was a baby, this was really difficult for me. I missed the first time she rolled over and sat up; the nanny who we were forced to hire enjoyed these moments. I will always remember fondly that when my daughter stood up and lifted her leg as if to take her first step, our nanny quickly pushed her over before she could, and carried her around for the rest of the day so that I wouldn’t miss it – bless! And I was there to see it. When I was finding it hard, my husband used to say; “she doesn’t care if you see her roll over for the first time or not, she cares that you are alive, to be with her and watch her grow up.”

I knew that come the end of treatment if everything went well I would no longer have cancer but I would have… …infertility, early menopause (at 31 years old) and a permanent colostomy bag. Truth be told, I struggled with finding out I needed a colostomy more than finding out I had cancer – cancer I could deal with, this I couldn’t. I thought it was the absolute worst thing that could happen to me and I went into a very strange denial about the ostomy, praying it wouldn’t happen. I actually said if I didn’t have kids I would prefer to die than have a colostomy - this sounds so over-dramatic now but I have heard other people who need colostomy’s say the same thing. I only wish I could go back to my pre-operation person now and tell her that it wasn’t going to be anything near as bad as she is expecting.

I have never hidden the fact I have a colostomy but I didn’t used to be overly vocal about it either. Why? Embarrassment essentially. It still has a terrible stigma and I was beset with fears about the things I wouldn’t be able to do and what people would think when they found out. My worst fear bring that people would think that it/I was minging. A fear that derived completely from my own thoughts and perceptions about it what living with a colostomy meant.

I was also worried about what it would be like for my children. I was worried about the possibility of them getting teased at school when their friends found out, or they would think I was strange. I was upset at the thought of never getting to go swimming with them. The truth is, swimming is no problem at all (as I have spoken about here), and they think it’s normal. My son asked me recently if all mummy’s have them, obviously I said no and explained that I have one to stop me getting very sick again and he was more than happy with that.

The bigger picture of why someone has an ostomy can get forgotten. In my case, it means that I no longer have cancer. In other people’s cases, they no longer have a life-threatening and debilitating illness. One person told me how her surgeon told her ‘either you have a bag or end up in a bag’. Although this wasn’t delicately put, it serves well to remind us that it is what someone is facing going into ostomy surgery. Without this operation, they will die. Yet to some (myself included) having it is still unbearable. As I said before, I thought if I didn’t have kids I wouldn’t go through with the operation (I will always laugh thinking of my sister saying, “what about me, aren’t I worth living for?!”)

The thought of having an ostomy is immeasurably worse than the reality. I never thought I would get used to it, yet only a few months after surgery I was telling someone who needed a colostomy that it was nothing to be afraid of and I was managing okay. I was shocked as the words came out of my mouth, I couldn’t believe I had said it and that was when I realised – it was true! I could do this, I was, doing this. Do I wish I didn’t have it? Yes. But on the whole is it perfectly manageable and there is nothing that I did before that I can’t do now.

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Aisha Wife and mum of two Aisha tells how positive thinking got her through her ostomy surgery. “I was diagnosed with Ulcerative Colitis in 1990 at just 19 years old..." Read Aisha's story
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Aisha's story

I was diagnosed with Ulcerative Colitis in 1990 at just 19 years of age. During the next 15 years, I continued to have several hospitalisations and was in a great deal of pain until in 2008 I had an ileostomy. The early days after the operation of getting your head round how you look, how other people see you, having to try and find the right products that work for you can be hard going, but there really is light at the end of the tunnel.

My Stoma Care Nurse helped me deal with each stage of the problems I was encountering and based on those problems, suggested a different product to try. It took time but I got there in the end!I now have a combination of products that really work for me.The biggest advantage for me having an ileostomy is now being able to go for walks free from pain, to be able to give my boys a piggy back without having to give up only after a few seconds because of the excruciating pain – and also to be able to do something as simple as a handstand – something I didn’t think twice about in my teens yet for a good half of my life I was in too much pain to even consider doing such a thing.

A stoma is a tough thing to have to come to terms with but with some positive thinking and by asking for the appropriate help, I have every confidence that everyone in a similar position can get there – like I did.”

 

Aisha, 
Wife and Mum of Two

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Types of ostomy bags

SenSura® Mio Colostomy Generally, with a colostomy you will need to use a closed bag. Learn more about colostomy pouches
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Colostomy appliances

Generally, with a colostomy you will need to use a closed bag. But if the output from your stoma is particularly fluid, a drainable bag may be more appropriate. You may want to move away from the clear bag fitted immediately after your operation to an opaque version that could also be smaller. Also if you have had an end colostomy, you may be able to manage your stoma with a colostomy plug or irrigation. 


There are two main types of systems:  

  • One-piece system 
    This consists of a collection bag with an integrated adhesive baseplate, which firmly fits around your stoma.
  • Two-piece system
    In the two-piece system, the collection bag is separate from the adhesive baseplate, and the two halves are securely clipped or sealed together. This means that you don’t have to remove the adhesive plate from around the stoma every time you change the bag. 
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SenSura 1 piece drainable Ileostomy Generally, with an ileostomy you will need to use a drainable bag. Learn more about ileostomy pouches
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Ileostomy appliances

Generally, with an ileostomy you will need to use a drainable bag. You may want to move away from the clear bag fitted immediately after your operation to an opaque version that could also be smaller. 

There are two main types of systems: 

  • One-piece system
    This consists of a collection bag with an integrated adhesive baseplate, which fits firmly around your stoma.
  • Two-piece system
    In the two-piece system, the collection bag is separate from the adhesive baseplate, and the two halves are securely clipped or sealed together. This means that you don’t have to remove the adhesive plate from around the stoma every time you change the bag. 
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SenSura Click Urostomy Urostomy Urostomy bags come with a tap and urine bag to wear discreetly on your body. Learn more about urostomy pouches
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Urostomy appliances

There are many different types of bag available, and your specialist stoma nurse will be able to help you choose the most appropriate one. You may want to move away from the clear bag fitted immediately after your operation to an opaque version that comes in smaller sizes. Also, you may choose to use a night drainage bag when you get home. 

There are two main types of systems: 

  • One-piece system
    This consists of a collection bag with an integrated adhesive baseplate, which fits firmly around your stoma.
  • Two-piece system
    In the two-piece system, the collection bag is separate from the adhesive baseplate, and the two halves are securely clipped or sealed together. This means that you don’t have to remove the adhesive plate from around the stoma every time you change the bag. 
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After stoma surgery

Read our guidance on what to expect in the early days after stoma surgery.

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