Living with Disabilities: Ileostomy Sufferers

Most people have never heard of a stoma. A quick medical lesson for you … words ending in ‘ostomy’ are associated with a stoma. For example, Colostomy involves an opening in the large bowel (colon), whilst Ileostomy is an opening in the small bowel (ileum) and Urostomy involves the urinary tract.

A stoma is formed when the surgeon makes an opening in the abdomen and brings out a small section of bowel to the surface. He/she will then stitch the open section of bowel to the abdomen, forming a stoma. The bowel opening is then covered with a stoma bag to collect body waste (faeces). These bags will normally be drainage bags so you can empty them into the toilet.

65% of stomas are permanent but due to improved surgical techniques over the pass ten years, this percentage is gradually declining. One well established technique is an ileoanal pouch. This is created internally so a stoma bag does not have to be worn. It is a highly complex procedure and is usually done by highly trained surgeons
Some people avoid having surgery for years, quite prepared to put up with the pain of their bowel condition. Although having a stoma can be frightening it can end years of pain from cancer, Crohn’s disease, diverticuli, ulcerative colitis and other bowel problems. Not everybody with bowel problems end up having to have a stoma.

Unfortunately, for some people, a stoma is performed as an emergency operation so they are unable to discuss things with a specialist nurse (colorectal). For others, who know when their procedure is to be performed, they will have seen a nurse beforehand. The nurse will go over the procedure and discuss in detail what the patient can expect.

Living with a stoma is not as frightening as it seems. You will get plenty of help and support from your medical team. In some local areas there are support groups for people who have had bowel procedures. There is also a website for ileostomists, www.the-ia.org.uk.

Living with a stoma doesn’t need to have a dramatic affect on your life or lifestyle and talking to someone who has had similar procedures can be very helpful.

The first sighting of your stoma can be quite daunting but once you accept it, it is not as bad as it seems. Some people even name their stomas. With an ileostomy you do have to be a little bit careful with your diet. Because the ileum is narrow an ileostomist has to be aware of blockages if they eat too much high fibre food. That said you do not avoid these foods altogether, just eat them in smaller quantities. Ileotomist must also make sure they have a high intake of fluids, especially in hot weather to prevent dehydration.

Living with an ileastomy does not have alter the way you live. In fact for a lot of people, after having so many years of pain and confinement, life is 100% better. You can still do sport, go travelling, get married and have children (if you are young enough).

Remember, having a stoma is not as frightening as it seems.

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