Learning that you need a part of your bowel removed always comes as a shock. Often, it’s difficult to take in all that you’re told, and you may not know at first exactly what procedure you will have, and whether an ileostomy or colostomy will be temporary or permanent.
Where possible, your surgeon will try to join up (anastomose) the cut ends on either side of the resected bowel. If this is not possible, perhaps because of poor blood supply, because it would produce too much tension, or because the lower end of the bowel is involved in the disease process, your surgeon may fashion an ileostomy or a colostomy.
An ileostomy connects the end of the small bowel (ileum) to an opening (stoma) made in your abdominal wall, usually on the right hand side, to form a ‘spout’. Waste is soft or liquid, and collected in a pouch that can be drained from a sealable opening at regular intervals.
A colostomy connects part of your large bowel (colon) to an opening (stoma) made in your abdominal wall, usually on the left hand side. Waste is semi-solid or solid and collected in a colostomy pouch which sticks to the abdominal wall and this is usually replaced one to three times a day.
A temporary stoma may be needed to give damaged or operated bowel time to rest and heal, and is surgically closed several weeks later, after all swelling has settled down. A permanent ileostomy is needed if all of your lower bowel is removed (total colectomy), while a permanent colostomy is needed if the lower rectum is involved in the disease process.
What if I don’t have the operation?
If surgery is not carried out when recommended by your surgeon, it is likely that you will experience a worsening of your symptoms, and of your health. Depending on the bowel disease you have, you may develop a blockage, a perforated bowel or an abscess, all of which are potentially life threatening. If you have cancer, it is more likely to spread and become incurable.
What are the benefits?
Surgery removes diseased bowel and gives you the best chance of a cure for some diseases, such as bowel cancer. It can also significantly improve bowel symptoms such as persistent pain or looseness if you have an inflammatory bowel disease.
What can I do to prepare?
Try to be as fit and healthy as possible through gentle exercise. Eat a well-balanced diet, unless advised to follow a particular eating regime. You will usually see a stoma care nurse before your operation who can offer support and advice so you know what to expect and can make plans to adapt your lifestyle. You can also obtain invaluable advice and support from the Colostomy Association: www.colostomyassociation.org.uk and the Ileostomy & Internal Pouch Support Group: www.iasupport.org.
What happens during the recovery period?
You are likely to feel tired during the first few weeks after your operation, but gentle mobilization is important to reduce the risk of developing a deep vein blood clot. You will be advised not to lift anything heavy, or to carry out strenuous activities, for at least the first 6 weeks. You should not drive until you are advised that you can do so by your doctor and insurance provider. This is usually once you can perform an emergency stop without fear that your wound may hurt.
You may experience urgency, constipation, diarrhoea or loose stools after surgery, which usually settles down. Medication can help to bring these bowel symptoms under control. When, or if, you can return to work depends on the bowel condition that you have, how well you are generally, and the type of work that you do.
Living with a stoma
When you leave hospital you will be given a list of products that you need, and your GP will issue prescriptions for these when you need new supplies. If you have a permanent stoma these supplies will be free of prescription charges, but if you have a temporary stoma you may have to pay prescriptions charges unless you’re over 60 years of age. Information on prescription costs and exemptions is available here: http://www.nhs.uk/NHSEngland/Healthcosts/Pages/Prescriptioncosts.aspx
You can obtain your repeat prescription products from a pharmacy, or direct from a Supply Company (whose details will be given to you by your doctor or hospital) who can take care of repeat prescriptions for you if you prefer. They can phone you each month, contact your surgery for the necessary prescriptions, and send the order to your home (in plain packaging) which often makes life a lot easier. There is an excellent overview of all your options here: http://www.colostomyassociation.org.uk/index.php?p=217&pp=3&page=Obtaining%20Supplies
Some people may prefer to use colonic irrigation as an alternative to wearing a colostomy appliance. Information on this option, and other diet and lifestyle advice is available here: http://www.nhs.uk/Conditions/Colostomy/Pages/living-with.aspx
It’s natural to worry that others may notice you are wearing a colostomy or ileostomy bag, but modern systems are discreet and secure, so few people will know unless you tell them. Accessory products that can make living with a stoma easier include support belts, deodorisers, protective skin wipes, non-sting adhesive removers, skin cleansers, barrier creams and discharge solidifying agents. These products can be ordered directly from your stoma pouch supplier. You can also request patient samples from suppliers such as Opus Healthcare, http://www.opus-healthcare.co.uk/products.