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Why would I have surgery?

There may be a few reasons why surgery would be needed for patients with Crohn's disease and ulcerative colitis. For some people, medications may not have been helpful in controlling their disease, even though they have always taken medications exactly as the doctor ordered. For some people, their disease has caused complications that need to be treated. There are times when surgery is a decision that you, your family and healthcare team are able to plan for and decide together, but there could also be instances where doctors must act fast and perform emergency surgery in order to ensure you are safe. Some people never have surgery, and others have had multiple surgeries. The type of surgery you have depends on your disease and symptoms. Every person’s disease is different, and it is difficult to predict what can happen. However, you can inform yourself as much as possible so that you feel better prepared.

How will I know if I need emergency surgery?

Not all surgeries happen because of an emergency but when they do occur, it is usually because there is something happening in your body that could be very harmful. Surgery is urgent if:

• There is a blockage (obstruction)- your stool cannot pass through your body because it is being blocked

• There is a perforation (hole ) in your intestine

• The symptoms and inflammation are severe and cannot be controlled with medications

• Excessive bleeding

• There is a fistula (or tunnel from your intestine to another part of your body)

• There is an abscess (or a collection of pus) that needs to be drained

Is surgery safe?

You should know that all surgery comes with risk, and each surgery may have different risks. Some people may have to go through multiple surgeries. Common complications from surgery may include bleeding, infection, injury to surrounding organs and need for reoperation. Your healthcare team should talk with you and your parents about the potential risks of surgery and what important changes you can expect.

Will surgery cure my disease?

For Crohn’s disease, surgery is not a guarantee that your disease will go away because Crohn’s can affect any part of the digestive system. However, surgery can be helpful in relieving symptoms from inflammation in the intestines. In ulcerative colitis, removing the colon and rectum (proctocolectomy) does not necessarily mean you won’t experience other symptoms from surgery. Having your colon and rectum removed will require your body to heal and/or adapt to this change. The goal of surgery is to help relieve symptoms and inflammation, or if it is an emergency, to keep you safe. While most people are able to live a normal, healthy life after surgery, remember that every individual’s disease and experiences are different.

How long will it take for me to feel like myself?

Recovery will depend on the type of surgery that is done but for some people it can take up to a year to feel better. You may not feel 100% immediately and it may take some adjustment time as you recover. You should know that surgery is a journey that includes preparation, and recovery. If you do have surgery, it is helpful to take this journey with support from parents, your healthcare team, or any others that you feel you can count on.

How do I prepare for surgery?

Most people do very well post-surgery, and after recovery are able to return to work and normal activity. An adjustment period of up to one year should be expected after surgery. Initially, there may be up to 12 bowel movements a day. Stool may be soft or liquid, and there may be urgency and leakage of stool. As the pouch gradually increases in size and anal sphincter muscles strengthen, stools will become thicker and less frequent.

After several months, most people are down to six to eight bowel movements per day. The consistency of the stool varies but is mostly soft, almost putty-like. While there are no specific dietary restrictions, it’s advisable to chew food thoroughly and avoid foods that may cause gas, diarrhea, or anal irritation. It’s also important to drink plenty of fluids—six to eight glasses a day, preferably between meals.

Prior to surgery, patients should speak with their health care provider about any concerns, such as erectile dysfunction, or decreased fertility. Becoming as well-informed as possible will make you feel better about the operation. It is important to ask your surgeon questions about your particular disease and operation. Sometimes people feel more comfortable if they are able to ask other patients about their experiences with surgery. Your team may be able to help you find someone to speak with if you want to.

You may also want to speak to someone through the Power of 2 program.