Ostomates can experience pain from time to time and understanding why it happens and what to do about it, can relieve any fears and anxiety. Pain is a way of telling us there is something wrong with our bodies. Although it can feel frightening when you have a stoma, try to focus on where the pain is, whether it is your stoma itself, the skin around it, an adjacent wound or does the pain feel more internal? Being aware of where the pain is located, can help to identify the cause.
A key step is reaching out for support from your stoma care nurse or GP, is in helping to ease the pain. They can help you understand why you are experiencing pain and advise you how to help.
Understanding stoma pain
Pain involving your stoma can happen from time to time. This can be for a variety of reasons, some of which can be easily resolved with the knowledge of what is causing the pain and the appropriate action to take.
Following stoma surgery, the recovery process will involve some discomfort, as swelling and inflammation starts to settle, and your body adjusts. Further down the line, there may be other reasons why ostomates experience pain, so it is useful to understand what the common causes may be.
Common causes
Leaks:
Stoma leakage is usually a result of the stoma appliance not fitting correctly. At some point, many ostomates will experience a dreaded leak from their appliance. It is worth making sure the aperture (hole) of the bag fits correctly around your stoma. There should be no gaps around your stoma, nor should it be tight when applying your appliance but it should sit comfortably around your stoma. If you experience a leak, the effluent from your pouch leaks under the flange and onto your skin. Then it quickly starts to cause an irritated sensation which can then lead to sore skin, becoming very uncomfortable.
Constipation:
Constipation may be an issue if you have a colostomy. It can cause abdominal cramping and if you are constipated you will notice that you pass a very hard and dry stool which can cause some discomfort.
Eating a high fibre diet and drinking plenty of fluids will help with constipation. Try to increase the amount of fibre which helps soften the stools, by choosing wholemeal rather than white bread/pasta, wholegrain cereals such as Weetabix/porridge and more fruit and vegetables. Constipation may also be due to not drinking enough fluids, try to drink 6-8 cups per day.
Medication could also be the cause of constipation – so check any painkillers or anti-depressants you may be taking. If your constipation lasts for more than 2-3 days without any signs of improving, speak to your stoma care nurse or GP as you may benefit from starting a course of laxatives.
Stoma obstruction and blockage:
Partial or complete blockages can be experienced by ostomates, due to the type of surgery you may have had. These blockages can be caused by certain foods which the bowel may find difficult to digest or could be caused by adhesions and scar tissue within the bowel which are stopping the stool from passing through.
You will know if your stoma is blocked as your stoma pouch will be empty when it should be filling up, or in some cases the output may become watery. Another symptom, in addition to your output slowing down, is stomach ache/abdominal pain. You may start to feel waves of cramping and pain, which may worsen if the problem is not resolved. Some self-help tips include stopping eating solids but increase your fluid intake. Drinking warm drinks can also help stimulate the bowel. Having a bath may ease the abdominal pain. Drawing your knees up to your chest and rocking from side to side can also help move the food blockage.
You will find your abdomen becomes swollen and hard, eventually if left unresolved, a blockage can cause intense pain, nausea, and vomiting. If this happens, please seek emergency medical attention to resolve the obstruction and avoid perforation of the bowel.
Parastomal hernia:
A parastomal hernia is when loops of the intestine bulge through weakened abdominal muscles behind the stoma. You will usually be able to tell if a hernia is present by the obvious bulge or lump which forms behind or around your stoma. As the hernia develops and grows, it can cause the stoma to become retracted which can cause issues with the adherence of your stoma bag. If your hernia is large, you may experience a dull ache or dragging sensation, particularly after the stoma has been active or towards the end of the day. Contact your stoma nurse for a review of your stoma. Your stoma nurse may measure you for a support garment which will help provide some support for the hernia and will ease any discomfort.
Less common causes:
Granulomas:
Granulomas are benign growths which may develop around the stoma. They appear as small, raised, red bumps. They are common and are deemed a nuisance by ostomates who experience them. Granulomas can be painful when touched and can bleed very easily particularly when the skin around the stoma is being cleaned. The bleeding can loosen the adhesive of the stoma appliance and can cause leaks. Although they are problematic, they are usually harmless, but it is a good idea to get them checked out by your stoma nurse.
Ulcers:
Ulcers can develop around your stoma and underneath your stoma appliance. They can occur for a variety of reasons. Often, they can be caused by infection, or friction from your stoma bag and therefore can be easily resolved. More complex ulceration can be linked to original diagnosis or an underlying medical condition such as inflammatory bowel disease fistulas or pyoderma gangrenosum, or even the medications you may be taking. Despite the cause, they can often cause pain and discomfort. Contact your Stoma care nurse and they will advise you on how to manage these.
Retracted stoma and stenosis:
A retracted stoma occurs when the stoma is below skin level. It can occur with a urostomy, ileostomy or colostomy. The reasons are usually due to difficulties with the stoma formation, weight, and the shape of your abdomen. Retracted stomas can cause a few issues with leaks and sore skin, it will need careful assessment from your stoma nurse to decide which stoma appliance will work best for you. Often a convex product will be used, but this must be initiated and monitored by your nurse.
Stenosis results in the stoma becoming very tight and small. The output from your stoma will become ribbon like or even liquid and may cause some pain when passing stool. Again, let your stoma nurse monitor this, as your stoma may need to be gently dilated. You may also be advised to take laxatives to keep your output soft, so it is passed easily without any discomfort.
Skin allergy:
Any one of us can develop an allergy at any time. Developing an allergy to any stoma product or pouch can cause endless problems with discomfort, irritation, and soreness. Often there is a process of elimination and working with your stoma nurse to identify what product might be causing the irritation is useful. Localised patch testing of products can help work out what is causing the issues. If the allergy is constant, you may be referred to Dermatology for patch testing to identify the material which is causing the issue, so you can avoid this in your stoma products.
Emotional impact
Pain can have a huge emotional impact on our wellbeing. It doesn’t just affect our bodies, but it can affect how we feel emotionally. As a result, our thought patterns can become negative, low, and we become full of frustration. Pain can take over our daily lives and may disrupt our sleep, leading us to feel unfocussed, short tempered and memory poor.
Living with pain can also lead to avoiding things you usually enjoy, as an ostomate you may fear leaving the house due to the pain you are experiencing. Make sure you reach out to a healthcare professional to look at ways of managing your pain so that it doesn’t impact your lifestyle.
When to seek medical advice:
If your pain is severe and does not ease, contact your stoma care nurse or GP.
If your stoma stops functioning in addition to experiencing severe abdominal pain, go straight to A&E.
FAQs and concerns:
Q: Can my stoma cause pain?
A: No, your stoma itself has no nerve endings, so it doesn’t cause pain
Q: I have stomach cramps, how do I know if this is a bug or there is a problem with my stoma?
A: If you have stomach cramps, keep a close eye on your output. Often it can be loose. It could be an upset stomach or a reaction to what you have eaten. If so, keep a food diary to monitor things. If your stoma is not functioning properly or there is no output in the stoma bag there could be a chance you are constipated. You may even have a blockage, other signs of a blockage are bloating, severe abdominal pain, nausea and vomiting. It is important to reach out to your stoma care nurse or GP as soon as possible.
Q: The skin beneath my stoma bag is so very sore, causing discomfort and pain. What can I do?
A: It sounds like your peristomal skin has become sore. This could be from several reasons such as leaks, skin irritation, sensitivities to products. Contact your stoma care nurse who will assess your stoma and skin, identify what is causing the leaks and provide soothing powder/pastes to help you feel more comfortable.
Q: I have a dull ache around my parastomal hernia, is this normal?
A: Often hernias create a dragging or dull sensation, especially at the end of the day. At times coughing or straining can exacerbate the pain. Your stoma nurse will provide you with a support garment to wear during the day to help support the hernia, which should reduce the discomfort. Seek immediate medical attention if the hernia causes severe pain or if you have problems passing a stool through the stoma.
