Many people find the idea of having to have/live with a stoma very difficult, quite scary and deeply upsetting, but we never cease to be amazed just how well people adapt and deal with medical challenges like having a stoma, when they have to. It’s obviously not ideal, but it can greatly improve quality of life for some patients (for example if you have bad Ulcertive colitis that is not responding to medical therapy) and indeed be life-saving in some instances (if you have a bowel perforation / abscess on the bowel). So we want to talk a little about stomas, in recognition of the many, many people out there who are living with a stoma, either temporarily or permanently.
What is a stoma?
A stoma is the name given to a connection between your gut on the inside and the skin surface of your tummy. A stoma allows waste products – faeces – to be passed out of your body before it reaches the end of your gut. Your stoma is then connected to a stoma bag which collects the waste. A stoma has no nerve supply, so it does not hurt. If a stoma connects the colon (large intestine), to the surface the tummy, it is called a colostomy. If it is made from a connection between the ileum (small intestine), and the abdominal wall, it is called an ileostomy.
A colostomy and an ileostomy look quite similar, but there are some differences in their appearance and in the appearance and amount of faeces that enters the stoma bag. The faeces coming from an ileostomy tends to be liquid and can be of reasonably large volume (up to 1 L per day, or higher in the case of some people who have what is called a ‘high output stoma’). The faeces entering a colostomy bag tends to be much more solid and of smaller volume and looks more like normal faeces that is passed normally into the toilet.
A stoma can be permanent or temporary. A temporary stoma may be used to allow your gut to heal after bowel surgery – once your gut is healed, your stoma can be closed and your bowel re-joined – this is called a stoma reversal.
Who may need a stoma?
There are many reasons that someone may need a stoma, including:
- Bowel or anal cancer
- IBD: crohns disease or ulcerative colitis
- Diverticulitis
- A bowel obstruction
- Bowel incontinence
It can be difficult to adjust to life with a stoma. There are practical challenges of just learning how to look after it, the bags, the adhesives etc.
There is also the challenge of trying to do your normal activities (sports can be very challenging).
The effect on body image cannot be underestimated, particularly when many patients with IBD (both Crohn’s disease and Ulcerative colitis) are young, dating, etc. Thankfully, the conversations around having a stoma have really opened up in recent times- there is nothing to be embarrassed about- and there are many strong advocates highlighting the difficulties, but also providing great support and practical advice for people living with a stoma.
Most hospitals nowadays will also have excellent stoma-care nurses who are an absolutely invaluable resource and font of information about all things stoma-related.
Stoma Management and Care
Here are some simple tips that will help with your stoma management and care. It is essential to individualise these tips based on the advice of your doctor, stoma nurse and dietitian.
- It is essential to start eating soon after your surgery (how soon depends on your doctor’s advice), as the sooner you eat food, the sooner your gut will start working again.
- You are okay to eat most food with a stoma. However, it is essential to watch your body’s response to different foods. This involves looking at stoma output – how much is coming out of your stoma and how you feel.
- During the first few weeks with your stoma, you may be better off eating foods that are soft and easy to digest. This does not mean avoiding certain food groups; eating a balanced diet after surgery is essential. This may simply involve choosing softer varieties of food, e.g. mashed potato or soup.
- You may find it easier to digest plain foods. Avoid spicy and fried foods.
- If you are unsure how you will find eating a particular food, try to eat a small portion first and see how you react
- Include protein-rich food such as meat, fish, cheese or eggs to help with wound healing.
- For the first 6-8 weeks after surgery, avoid very fibrous foods such as nuts, seeds, raw vegetables, fruit or vegetables with the skin on, dried fruit, mango, pineapple, peas, and mushrooms.
- Choose white carbohydrates for the first few weeks, e.g. white pasta, potato with no skin or white bread, as your body will find them easier to digest.
- If you feel bloated or have a reduced appetite, eat little and often. This involves eating smaller meals and more snacks.
- After 6-8 weeks, reintroduce these foods slowly and in small amounts
- You may lose lots of water and salt when you first have your stoma. Make sure to drink 1.5-2L of fluid a day and extra for fluid losses. Add additional salt to your meals – around half to one teaspoon a day, if your stoma output is high
- Eat slowly and chew your food properly.
- If your appetite is significantly reduced, it might be hard to eat enough food. You may need to add extra calories and protein to your food by adding things like cheese or milk, e.g. melted cheese on a potato.
- You may need to avoid chewing gum, fizzy drinks, peas, lentils, beans, beer or brussels sprouts if they cause you to become gassy.
- If your stoma output smells, it may be caused by eating onions, garlic, fish, brussels sprouts, cauliflower, eggs, fish or spicy food.
- If you have loose stoma output, reduce your intake of fruit and vegetables, alcohol, caffeine and sweeteners, e.g. those found in fizzy drinks and high fibre carbohydrates, e.g. brown bread.
- Eating under-ripe bananas and white carbohydrates, e.g. white bread, porridge or apple juice, will help thicken your stoma output if needed.
- Enjoy your meals in a relaxed environment.
- Some people find that eating late in the evening increases their stoma output during the night; you may be better off moving your main meal to earlier in the day if this makes things easier for you.
- Once you get used to your stoma, you should be able to eat most of the things you could eat before. A healthy diet is all about inclusion, not exclusion.
- If you are having ongoing problems with managing your stoma, or if the output is persistently high, despite all the simple measures above, it is important to speak to your own stoma-care nurse or the medical / surgical team involved in your care as a high-output stoma does need specialist care and clinical nutrition advice.
Support
Depending on the part of your gut that has been removed (the end of your small bowel- this may be the case if you have an ileostomy), you may need B12 injections – speak to your doctor about this.
If you have any concerns about your stoma, check in with your GP or stoma nurse.
You can find additional support for dealing with your stoma with the following support groups: Ostomy Association of Ireland, Colostomy UK or Ileostomy and Internal Pouch Support Group, Guts UK, The Irish Society for Crohn’s and Colitis
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