Living with a Stoma
This information has been provided with kind permission from Crohn’s and Colitis UK – a nationwide charity committed to providing information and support, funding crucial research and working to improve healthcare services for anyone affected by Inflammatory Bowel Disease.
For further information please download the full patient publication from Crohn’s and Colitis UK
WHAT IS A STOMA?
A stoma (ostomy) is an opening on the wall of the abdomen that diverts the contents of the bowel out of the body. A bag fits around the stoma to collect the contents. There are two main types of stoma that people with IBD may have – an ileostomy and a colostomy. These may be temporary or permanent.
If you have Ulcerative Colitis (UC), you are likely to have an ileostomy. If you have Crohn’s Disease you may have either an ileostomy or a colostomy, depending on which part of the bowel is affected. Stomas may be formed from the cut end of the bowel (end stomas) or from a loop of bowel (loop stomas).
An ileostomy is formed when the ileum (small bowel) is brought to the surface of the abdomen. It usually has a short spout of bowel, 2-3cm in length, which helps prevent digestive waste products (output) irritating the skin around the opening. Your stoma nurse or surgeon will talk to you before the surgery about where the stoma will be on your abdomen. It is usually positioned low down on the right side. The output is usually soft and loose, with a similar consistency to porridge. This is because the contents of the bowel have not passed through the colon, which is where the body absorbs the remaining water to create solid faeces.
A colostomy is formed when the large intestine (colon) is brought to the surface of the abdomen. It is usually raised at least 5mm above the level of the skin on your abdomen, to help prevent faeces irritating the skin. Your stoma nurse or surgeon will talk to you before the surgery about where the stoma will be on your abdomen. It is usually low down on the left side but this will depend on where the affected part of the bowel is. The bowel contents pass through part of the colon, where the body absorbs some of the remaining water. Depending on where the stoma is, the faeces passed out of the body will be semi-formed or fully formed.
• Loop and end stomas
A loop stoma is formed from a loop of bowel brought to the surface of the abdomen. An opening is made in the wall of the bowel and the edges are stitched to the abdomen. The contents of the bowel pass out of one end of the loop into the stoma bag. The other end of the loop does not pass any digestive contents, but may pass some mucus. Loop stomas are usually temporary but can be permanent. An end stoma is formed from the cut end of the bowel. The surgeon brings the end of the bowel to the surface, folds it over and stitches it to the skin on the abdomen. End stomas can be permanent or temporary. The pictures below show loop and end stomas formed from the small bowel (ileostomy), but they can also be formed from the large bowel (colostomy).
WHY WOULD I NEED A STOMA?
Your doctor may recommend surgery to remove part of the bowel if you have:
• severe IBD that is not responding to medical treatment
• complications of your disease that will not respond to medical therapy, such as a narrowing in part of the bowel (stricture) or a pus-filled area in the wall of the bowel (abscess)
• a perforated bowel
• a high risk of cancer in the bowel
• cancer in the bowel.
Some people choose to have a stoma if they feel it will improve the quality of their lives.
• Crohn’s Disease
If you have Crohn’s Disease in the colon, you may have an operation to remove most or all of the colon (colectomy). You may have an ileostomy or the surgeon may join the end of the ileum (last part of the small intestine) to the remaining healthy colon or to the rectum.
If you have Crohn’s in the rectum or anus, you may have surgery to remove all or part of the rectum (proctectomy) and the surgeon may need to create a permanent stoma to divert the digestive waste products. You may have a temporary stoma to relieve your symptoms before having this surgery.
If the colon, rectum and anal canal need to be removed (proctocolectomy), you will have a permanent ileostomy. Very occasionally, some people with Crohn’s will need emergency surgery, for example, if they have:
• severe bleeding from the bowel
• a blocked bowel
• a hole or tear in the bowel wall.
They may have a temporary stoma after the surgery
• Ulcerative Colitis
If you have UC, you may have the whole colon and rectum removed (proctocolectomy). You will then have a permanent ileostomy. An alternative is to remove the colon (subtotal colectomy) but leave the rectum in place. After this surgery, you will have a temporary end ileostomy. The subtotal colectomy relieves your symptoms and gives you time to decide whether to have either a permanent stoma (end ileostomy) or an ileo-anal pouch. The surgeon will discuss your options with you.
Surgery to form an ileo-anal pouch is commonly called pouch surgery, but may also be described as IPAA (Ileal pouch-anal anastomosis) surgery. The surgeon uses the ileum (the last part of the small bowel) to make a pouch, which is joined to the anus. You will usually need two or three separate operations to complete the surgery. The surgery allows you to pass faeces from the anus. If you have this type of surgery, you may have a temporary stoma (loop ileostomy) while the bowel heals after the pouch is formed. You may find the loop ileostomy behaves differently from the temporary end ileostomy you had after the first operation (subtotal colectomy). For example, the output may be increased and you may have more problems with sore skin. This is because the loop ileostomy is formed higher up the small bowel, so the output is looser and more likely to irritate your skin.
If you need emergency surgery for UC, you may have an end ileostomy. This may be reversed if you are able to have further surgery to form an ileo-anal pouch.
for more detailed information please download the full patient publication from Crohn’s and Colitis UK
© Crohn’s and Colitis UK 2017