“What is a Stoma?” Part III: Living & Coping with a Stoma

Disclaimer: This information is based on my own research into this particular aspect of stoma care as well as some personal experience and should not be used as medical advice or a diagnostic tool. The suggestions given within are taken from sources laid out in the references header.  If you seek advice regarding the things you experience within your own disease, please contact your SCN  for medical advice.

If you are looking for the other posts in the ‘What is a Stoma?’ series, you can find them here.

Welcome to Part III in my new blog series on “What is a Stoma?” 

This instalment covers the question of what exactly having a stoma feels like, possible diet & lifestyle changes, potential complications and considerations of living with a stoma and where to get access to support & advice for coping with having a stoma. The information below I have complied from various sources including current ostomates of all types. I hope that this show the wide variation in how each type of stoma is dealt with; not only medically but on a personal & emotional level too. 

This is not an extensive list of all the aspects of living and coping with a stoma but that of the most commonly drawn upon by those going into surgery from current ostomates. Anything from this instalment is not intended as medical advice as I am not a healthcare professional. If you seek any advice on the follow, please seek it from a trained medical professional, i.e. your consultant, specialist nurse or GP. Comments are welcomed, enjoy! xox

Living with a Stoma and Learning to Cope

‘What does having a stoma feel like?’

At first, your stoma will feel foreign and unusual. What on earth is this thing on my belly doing here? Will I ever get used to this? How will I manage this? are all common and usual first questions asked by those faced with a stoma after surgery. In the groggy haze of anathestic and morphine; you won’t really notice your stoma until you are able to move about abit more. But being made of bowel, it has no nerve ending so all you will feel is the swelling of the stoma due to being handled in surgery and it’s lack of peristalsis due to anathestic. Once you are mobile and weaned off painkillers, your stoma will work and you will be allowed to eat.

Going forward, you will feel the bag more than the stoma at first. This is purely due to the nature of the output filling the bag and unnaturally pulling against your abdomen due to gravity. This is a feeling you will grow accustom to, as it means its time to empty your bag. Most ostomates I spoke to said that after 6 months to a year, the feeling of noticing your stoma and your ostomy bag decreases. And probably by the second year, it becomes second nature and you hardly notice it – unless it wants you to!

When the stoma is inactive – as in the peristalsis of your bowel is relaxed  – you don’t feel it. But the act of peristalsis means that you will sometimes feel the stoma creating output into the bag. This could either be when the output becomes more watery or when it becomes too thick. These changes usually mean that the stoma is very active and creates a lot of output in a short period of time. This is not the time to ignore that bag filling up!

Diet & Lifestyle

NB: unless you follow other dietary restrictions due to the reason behind your ostomy, this is intended for all.

For colostomies, the aim is to eat a ‘normal ‘balanced diet; including fruit, vegetables, protein, carbohydrates and to drink plenty of fluid throughout the day. Introducing fibre should happen slowly and gradually after surgery to avoid any potential issues with the stoma, but as a colostomy is formed from colon, nutrients should be obtained as it once was.

For ileostomies, they can also aim to a balanced diet as the above. However, despite being able to live without a colon, it does mean they will need to keep well hydrated and balance their salts and sugars. It usually advised to follow a low fibre diet too, and to chew food well to avoid problems.

For urostomies, they can also eat a balanced diet but will need to maintain a higher level of hydration due to the stoma being for urine. They are advised to be mindful of the food that can increase the odour of urine as they will be in closer proximity.

Often, many ostomates get asked about their diet and how can they eat x, y or x? There is nothing to say that you can’t eat the same diet you did prior to your surgery, but to add in food types slowly instead of all at once and so quickly in the post op recovery period. As you grow more used to your stoma, you will understand what works and what doesn’t work when it comes to eating with your ostomy. You might find your habits change!

In other aspects of lifestyle; a stoma does not stop you from doing anything you did beforehand. You can still work, you can still exercise and you can still have a relationship and have sex.

A good employer will hopefully understand your need for surgery and make allowances for you to empty your stoma bag as and when you need to. A phased return to work after surgery is always a good idea; recovery from major abdominal surgery can be exhausting and working too soon can take a toll on the body not always seen.

As with any major surgery, recovering is important. Doing exercise too soon isn’t encouraged and it should begin light and then be worked up as you regain strength. You might find yourself conscious about your bag in public but no one will know you have one. To support it whilst exercising you can purchase support tops and underwear to protect your abdomen from too much stretching. This is important – you might have been cut through your muscles and they will be weakened, making them vulnerable to tearing and causing a hernia. Several options of support wear are available – Vanilla Blush and Comfizz have great ranges. If your stoma is permanent you are entitled to an NHS Prescription allowance too: information available on the above links.

And when it comes to sex, these support garments and even special intimate underwear can help too. At first, having sex might be the last thing on your mind after surgery but as the time passes and your incisions heal and you grow in confidence with your stoma, there isn’t any reason why you can’t have a sex life. Feeling comfortable is key – emptying the bag before hand, talking about it, not making it feel like a huge deal – all help to make it an enjoyable experience. Finding the right person to share your intimate moments with is important too; someone who respects you and understands your stoma.

Complications & Considerations

  • Skin irritation – Probably the most common; this happens when they ostomy bag isn’t fitting correctly and output leaks or seeps under the baseplate and onto the skin. It will become read, itchy and uncomfortable if left untreated. When this first happens, you may very well be with you SCN who will recommend product/s to help aid healing of the skin and advise on how to prevent this from occurring.
  • Stoma problems –
    • Hernia. A stoma hernia is seen as a bulge in the skin around the stoma and is a weakening of the abdominal wall around the stoma site. As with all hernias, a stoma hernia continues to increase in size and may eventually need surgical repair when it becomes too large.
    • Prolapse. A stoma prolapse occurs when the bowel pushes itself through the stoma. A person may be able to push the bowel back through the stoma and keep it in place with a stoma shield. If not, the stoma prolapse may require special care and a larger ostomy pouch. A stoma prolapse that becomes blocked or loses its blood supply requires surgical repair.
  • Blockage – This is the loss of function of the stoma in a colostomy or ileostomy for a prolonged period of time. If there is no passing of output for 4-6 hours, accompanied with cramping and nausea; it is probable that the bowel is blocked and medical attention is required. They usually occur when food is unable to pass through the bowel due to being hard digest or not chewed well enough. It is also possible that adhesion from prior surgeries or disease might cause blockages too.
  • Diarrhoea – Diarrhoea is common, even normal, with an ileostomy or ileoanal reservoir. In most cases of diarrhoea, the only treatment necessary is replacing lost fluids and electrolytes to prevent dehydration.
  • Electrolyte imbalance –  With the removal of the colon, maintaining electrolyte balance is important. Electrolytes are minerals in body fluids that are part of salts, including sodium, potassium, magnesium, and chloride. People should maintain good daily hydration by drinking plenty of water and liquids. If not, symptoms include: fatigue, weakness, nausea, muscle spasms or cramps and dizziness or confusion – and medical attention is required.
  • Vitamin B12 deficiency – Ostomy surgery of the bowel may affect vitamin B12 absorption from food and result in a gradual drop in vitamin B12 levels in the body. Low levels of vitamin B12 can affect the body’s ability to use nutrients and may cause anaemia. Both the anaemia and Vitamin B12 deficiency can be treated with supplements.
  • Phantom rectum – Phantom rectum is the feeling of needing to have a bowel movement even though the rectum is not present. Phantom rectum is relatively common. Symptoms are usually mild and often go away without treatment.
  • Short bowel syndrome – Short bowel syndrome is a group of problems related to inadequate absorption of nutrients after removal of part of the small intestine. People with short bowel syndrome cannot absorb enough water, vitamins, and other nutrients from food to sustain life. Diarrhoea is the main symptom of short bowel syndrome. Short bowel syndrome is uncommon and can occur with Crohn’s disease, trauma, or other conditions that lead to removal of a large amount of the small intestine.
  • Rectal discharge -People with an ileostomy or a colostomy whose lower colon, rectum, and anus are still present may experience a discharge of mucus from their rectum.

Seek Immediate Help for:

  • continuous nausea and vomiting
  • dramatic change in stoma size, shape, or colour
  • continuous bleeding at the junction between the stoma and the skin that does not stop by applying pressure
  • obstruction, prolapse, or narrowing of the stoma
  • a deep cut in the stoma
  • no output of intestinal content or stool from the stoma for 4 to 6 hours, with cramping and nausea
  • severe diarrhoea with risk of dehydration
  • excessive bleeding from the stoma opening

Support & Advice

For most, ostomy surgery comes with the addition of getting to know a SCN – Stoma Care Nurse – very well. If not just for the first couple of months as you adjust to your stoma but as a port of call when issues arise. They are specialised colorectal nurses with experience in dealing with stomas. They will train you on how to apply and change your ostomy bag, how to order supplies, give advice on how to manage at home, work and exercise with your stoma, as well as encourage you to persevere. They have experience of dealing with many different stomas so are a valuable source of knowledge, but remember; you live with your stoma – your experience is also valid.

Finding support to help you cope with living with a stoma can be tough. You sometimes feel like you’re asking silly questions but there are no silly questions! It’s all new in the beginning. Reaching out to the association’s dedicated to ostomies can be a good starting point as they can provide information and details of local support groups to meet other people like yourself, if you so wish. Online; there are lots of websites and blogs dedicated to the progress of living with, managing and coping with a stoma. Ostomy companies also have lifestyle and care programs along side the production and supply of their products. These are sources of good information based on years of business and are free to participate in.

The best advice I can give is to be gentle with yourself. You have just gone through major surgery; step one. You have a long recovery from that surgery if it is a smooth one without complications; step two. Normal life will return but it takes time; step three. Your stoma may be for a long period of time or for life; take it easy. Feeling ‘normal’ will change but you will grow and adapt to your new circumstances. There will be challenges and rough patches but on the whole, your stoma could very well have saved your life.

Further Reading

Next week is all about all about ostomy bags, accessories and NHS prescriptions!

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