Ulcerative Colitis

Treatment plan for ulcerative colitis

Surgery

Mild disease is more often than not treated with appropriate medications - surgery is usually reserved for more severe cases, or if complications arise. If you are not needing to have surgery, don't worry about the sections about the different types of surgery, preparing for your surgery, and the questionnaire

Surgery as a treatment option

Usually, treatment with medication is the first option for people with ulcerative colitis. Surgery may be needed, however, if there are serious complications (eg, perforation of the colon; severe bleeding; or toxic megacolon) or to achieve remission (no symptoms) in people with inflammation who have not had good results from medication. For best results, surgery is performed in patients who are less than 65 years of age.

Approximately 25-40% of people with ulcerative colitis will ultimately need surgery at some point. The main benefit of surgery is that once the colon and/or rectum are removed, people with ulcerative colitis are considered to be 'cured' as the diseased tissue is completely removed. As a result, there is no need for maintenance medication.

Based on a number of factors - extent of the disease and age and health - one of two surgical procedures may be recommended as described below.

Common types of surgery for ulcerative colitis                                         back to top

• Proctocolectomy with ileostomy: This surgery has been done for many years. The surgeon takes out the colon, rectum and anus. Then, an ileostomy is done, in which the lowest part of the small intestine (called the ileum) is put through a small hole (known as a stoma) in the belly wall. This allows waste to be drained from the body. A waste collection bag is worn over the opening (called an ostomy) to collect the waste.

• Restorative proctocolectomy (also called an ileoanal pouch anal anastomasis or IPAA): This is a much newer surgery that is done in two steps. In the first step, the colon is removed, and care is taken to keep both the anus and anal muscles (referred to as anal sphincters) in place. In the second step, the ileum (end of the small intestine) is turned into a pouch and connected to the anus after removal of the rectum. In some cases, to allow the pouch to heal after surgery, an ileostomy (as described above) is created, and closed 10-12 weeks later. The internal pouch is used to collect waste. Stools can then pass through the anus normally.

Preparing for your surgical consultation                                                   back to top

Making the decision to have surgery can be difficult. If you are feeling frightened or anxious at the thought of having surgery, it may help to have a good understanding of what to expect, both before and after. Sometimes it is helpful to meet other patients who have already had the same surgical procedure as they will be able to allay your concerns. Your surgical consultation will give you an opportunity to ask any questions that may be on your mind. In this appointment you will have a chance to meet your surgeon and discuss the procedure that is to be performed, including what you should do to prepare for it.

Some people fear surgery so much that they put if off for years or even tell their doctor they are feeling well when they really aren't. This can lead to unnecessary pain and could prevent you from getting in control of your ulcerative colitis more quickly. Surgery can give relief from symptoms and may even mean that you do not need to take any more medication. Also, remember that surgery may be your best chance of taking control of your disease and help get you back to doing the things you used to do as soon as possible and give you the best quality of life.

The following list of questions is provided to help you prepare for your consultation with your surgeon.

Questions to ask your surgeon                                                            back to top

Here are a few example questions you might want to ask your surgeon during the consultation.

1. What are the benefits and risks involved with this procedure? Knowing what to expect both before and after the surgery will help you prepare and plan ahead.

2. If we decide together that surgery is the best option at this time how long will I have to wait? Once you understand the potential benefits of surgery, you may want to get it done as quickly as possible. However, there may be reasons to wait a while - or have it very soon - so it is best to discuss timings with your doctor and set your expectations.

3. How long will it take before I start feeling better? This is important to consider so you can plan time off work and line up help from family and friends. It may take a few weeks before you are able to get entirely back on your feet and start moving around again as you used to.

4. When can I have sex again? Do not be afraid to ask this question of your surgeon. Even if your surgeon says you are well enough, you might not feel ready, so just take your time and communicate with your partner as well.

5. Will I have to make any lifestyle changes as a result of my surgery? If you have any concerns about whether you will be able to continue some of your existing activities (eg, sporting hobbies) then raise these questions with your surgeon and they will be able to give you lots of useful tips and advice.

Before and after surgery                                                                                 back to top

Here are some general considerations to help you prepare for and recover from surgery.

• Before the surgery, your doctor may tell you that you need to build up your nutrition. He or she should give you instructions for how to do this.

• Allow others to help you, even with the simplest of tasks. If you need help carrying the groceries or lifting something heavy, ask for help. Most likely, family and friends will want to help but may not always know what you need them to do and would appreciate your telling them.

• Once you get the clear signal from your doctor, try to start moving around again. This will help to get your bowels active again, and also help you feel better. Start gradually and don't push yourself to do too much too soon.

• You may have some other points to discuss concerning your return home after surgery.

• You may wish also to discuss various aspects of your current lifestyle.