What’s normal and when to seek help with your stoma

Hear from Sarah our Clinical Advisor

From A Bigger Life

It is important to know when you are experiencing physical changes with your stoma if they are normal for this stage of your journey, or if you need to seek help. It’s also important that you feel well with your new stoma and you are coping emotionally.

This handy guide should help keep you right.

My stoma – What’s normal for colostomy and ileostomy

  • Ileostomy Output – Initially your output will be loose but this will start to thicken to a porridge like consistency when you start to eat normally
  • Colostomy Output – Initially your output will be loose but will become semi-solid to solid when you start to eat normally
  • Stoma changing size – Within the first 6-8 weeks your stoma will shrink in size. The process to ensure your pouch fits is straight forward. Use your measuring guide once a week to measure the size of your stoma and cut your pouch to the most appropriate size
  • Very occasional leak – It’s not uncommon to develop some leakages when you are starting to learn how to manage your stoma. This should not happen regularly, seek help if it continues
  • Output colour – This may vary depending on the food you have been eating
  • Output smell – This may vary depending on the food you have been eating

My stoma – What’s normal for urostomy

  • Stoma changing size – Within the first 6-8 weeks your stoma will shrink in size. The process to ensure your pouch fits is straight forward. Use your measuring guide once a week to measure the size of your stoma and cut your pouch to the most appropriate size
  • Very occasional leak – It’s not uncommon to develop some leakages when you are starting to learn how to manage your stoma. This should not be the norm, seek help if it continues
  • Urine colour – This may vary depending on the food you have been eating or the medication you have been taking
  • Urine smell – This may vary depending on the food you have been eating or the medication you have been taking
  • Mucus – Your urostomy is made from a piece of bowel which will continue to produce mucus. This will be passed into your stoma bag along with your urine
  • If a change in colour and or smell is not food related, it may indicate a urine infection or dehydration. Please seek further help from your stoma care nurse or GP if this occurs

My stoma – When to seek help for colostomy and ileostomy

  • Stoma stops working
  • If your skin becomes red, sore or irritated
  • You experience extreme pain
  • If you experience frequent leakages

My stoma – When to seek help for urostomy

  • Stoma stops working
  • If your skin becomes red, sore or irritated
  • You experience extreme pain
  • If you have a fever
  • If you experience back pain
  • If there is blood in your urine
  • If you experience frequent leakages

My emotions – What’s normal in the first few weeks

  • Fatigue/tiredness
  • Low mood
  • Feeling helpless and scared
  • Feeling overwhelmed
  • Reluctant to manage stoma
  • Increased anxiety/awareness about stoma/pouch

My emotions – When to seek help

  • Continuing low mood
  • Not emptying or changing your own pouch – not able to achieve independence
  • Family/friends concerned about how you are coping
  • Continuing to feel overwhelmed, helpless and scared

Know that you are never alone. Join our online community where, from the comfort of your favourite armchair, you can be amongst people who understand, where you can share and discuss experiences, challenges or any topic you choose relating to life with a stoma.

Or maybe you prefer to just listen to others to start…

Visit a bigger life community for support.
Contact your Stoma Nurse for help and advice.

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