Ulcerative Colitis - Kids & Teens

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 following sections talking about the different types of surgery, meeting with the surgeon, and the questionnaire.

Will I need surgery?

For most people with ulcerative colitis, medicine is used first. However, for people with more serious problems or in people who do not do well with medicine, surgery may be an option.

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

There are two different types of surgery for ulcerative colitis. Your doctor will tell you which surgery is best for you based on your age, health and your illness. These two types of surgery are described below.

What are the common types of surgery for ulcerative colitis?

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. Poo can then pass through the anus normally.

Meeting with the surgeon

Deciding to have surgery can be very difficult. If you are feeling scared or worried about having surgery, it may help to know what will happen, both before and afterwards. Sometimes it is helpful to meet other people who have already had the same surgery because they can tell you about it. When you visit the surgeon, you can ask any questions you may have. In this meeting, you will have a chance to meet the surgeon and talk about what will happen and what you should do to get ready.

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 more needless pain and could stop you from getting in control of your ulcerative colitis more quickly. Surgery can give relief from symptoms and may even help you stop taking your daily medicine. Also, surgery may be your best chance of getting better and help get you back to doing the things you did before you got sick.

To help you get ready for your visit with the surgeon, you may want to prepare a list of questions you want to ask him or her. The next activity will help you do that.

Questions to ask your surgeon - parent-child activity

Here are a few example questions that you may want to ask your surgeon when you have your visit. Click on the PDF icon to open and print the list. Then, at the end of the list, add in any other questions you want to ask.

Example Questions

1. What are the good and bad parts about having this surgery?

2. Now that we have decided to have the surgery, will I have to wait a long time or will it happen right away?

3. How long will it take after the surgery for me to start feeling better?

4. Will I be able to do everything I could before the surgery?

5. Is there anything else I should think about before I have the surgery?

6. Can I do anything to prepare for the surgery?

7. Are there any support groups in the area where I and my family can find help, maybe from other people who have had surgery?

Before and after surgery - top tips

Here are some things to think about to help you get ready for your surgery and in the time right after your surgery.

Before the surgery, your doctor may tell you that you need to build up your nutrition. He or she should give you and your family 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.

You may want to talk about some other points on your return home after surgery.

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.

Your doctor may place you on daily medicine after surgery to help keep you symptom-free for longer (called maintenance therapy). Make sure you understand your dose and how often to take the medicine, and whether to take it with/without food or at a certain time in the day (eg, just before bedtime).

If your ileum (lower part of the small intestine) is removed, you may have bile salt diarrhoea. If your colon is removed, you may have diarrhoea because your body cannot absorb salts and water as usual. Talk to your doctor or nurse about what to do if this happens.

You may wish also to talk to your doctor about other changes you and your family can make in your daily lives to help you take good care of yourself.