Colorectal Cancer

Learning to manage a stoma

Learning to manage a stoma requires patience, practice, and knowledge built up over time. While specialist stoma nurses teach people the basics, a lot of learning takes place through trial and error. Speaking to other people with stomas or contacting the Colostomy Association or Ileostomy and Internal Pouch Support Group can be of great benefit.

For the first few days after surgery, stomas are managed by nurses but then people must learn to deal with it themselves. At first, many people felt this was an impossible task, but with the help of stoma nurses they all learned, often motivated by the desire to leave hospital. One man recalls this process and his feelings about it. Another man explains how, for him, learning to manage a stoma was an acquired skill like learning to be a tailor.

The importance of having adequate support is underlined by a man who has a permanent colostomy and for 8 months had a temporary ileostomy as well. He struggled to learn how to manage on his own because the stoma nurse was on sick leave and therefore unavailable at the time.

There are many different types of appliance (stoma bag) and invariably people said that managing their stoma became easier when they found the one that was right for them. One man was managing with the first type of bag he was given but was delighted when his local stoma nurse suggested something better. A man who had learned mainly through trial and error describes the benefits of the appliance he is currently using.

Many people found that the skin around their stoma became very sore. This was sometimes because waste matter from their bag got onto the skin and sometimes because they were using a bag that had to be peeled off every time they changed. People with temporary stomas sometimes did not seek a solution because they preferred just to cope until their reversal operation. Other people resolved their problems by seeking advice from a stoma nurse or changing appliance. 

Several people experienced distress over bleeding from the stoma because they had not been warned that this could happen. One man describes his panic when his stoma began to bleed in the shower.

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Stomas can sometimes prolapse (fall forward through the opening in the abdomen). This can simply mean that it becomes lopsided and slightly awkward to deal with or it can be more serious and require medical attention. One man describes how his ileostomy was painlessly pushed back into place after a prolapse. Another woman had a much more frightening experience. Stomas can also shrink or fall back into the opening of the abdomen. A woman explains how this happened to her when she was on a trip away from home. 

For more on these issues see: 'Daily living with a stoma'; 'Sexuality and relationships with a stoma'; 'Feelings about having a stoma'; and 'Information and support for stoma patients'.

Last reviewed August 2016.

Last updated May 2010.

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