For most people with Crohn's disease, 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.

More than half of people with Crohn's disease will benefit from surgery at some point in their lives. Surgery can help to keep symptoms away longer, sometimes giving many years with no symptoms. Some people can stop taking daily medicine for Crohn's disease altogether. Surgery does not cure Crohn's disease however, as symptoms may return somewhere else in the intestine later on.

There are several different types of surgery for Crohn's disease. Your doctor will tell you which surgery is best for you based on the type of problem, your illness, and the part of the digestive system that is affected. He or she may suggest that you wait until you are a bit older until you have the surgery. The most common types of surgery used in people with Crohn's disease are described below.

What are the common types of surgery for Crohn's disease?

• Resection: This is the most common type of surgery for people with Crohn's disease. The surgeon takes out a part of the intestine and joins together the two healthy ends. This may also be used to remove a fistula that hasn't responded well to medication.

• Strictureplasty: This surgery is used to open up a narrowed part of the intestine called a stricture. The surgeon makes a cut along the stricture and closes it the other direction, widening the diameter of the diseased intestine.

• Colectomy or proctolectomy: Complete removal of the colon and/or rectum. Some people with severe Crohn's disease need to have the entire colon taken out. If the rectum is not affected, it may be possible to join the end of the small intestine (called the ileum) to the rectum to allow the person to pass stools (poo) normally. If the rectum is also removed, an opening (called a stoma) is usually created in the belly for waste to be taken out of the small intestine (called an ileostomy). A bag must be worn on the belly to catch the waste. The stoma is usually made in the right lower abdomen near the belt line.

If you have an infected mass filled with pus which is tender to the touch (called an abscess), it may need to be drained with a needle. The doctor will use an echography or a CT scan to guide the needle to the right place.

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 Crohn's disease more quickly. Surgery can give ongoing 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 here to download a PDF version from EFCCA website. 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.