Why would I have surgery?
There may be a few reasons why surgery would be needed. 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. While there are times when surgery is a decision that you, your family and healthcare team are able to plan for and decide together, there could also be cases 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 mean you will no longer have the disease, but it 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.
One of the most common surgeries for those with ulcerative colitis involves removing the large intestine and the rectum (also known as a proctocolectomy). Once these organs are removed, a small opening is made in your belly (stoma) and the small intestine is then attached to the opening (this procedure is known as an ileostomy). This allows stool to move from the small intestine, through the opening, and out of the body. A small plastic bag (also known as an ostomy bag) is worn over the opening to collect the stool. For some people, the ostomy bag is temporary. For others, it is permanent.
Following the removal of the large intestine and the rectum, some people may have a procedure called an ileal anal pouch anastomosis. In this procedure, a surgeon will make a pouch inside of your body (sometimes called a J-pouch) using the end of your small intestine. The pouch is then connected directly to your anus. This allows stool to pass from the small intestine, through the pouch, and out through the anus. Because the newly formed pouch needs time to heal, a temporary ileosotomy is often created. An ostomy bag is worn while the pouch heals. It usually takes 8 to 12 weeks for the pouch to heal. Once healed, the hole is closed, the small intestine is connected to the pouch, and stool can once again move through the anus. An external ostomy bag is no longer necessary.
Living with an Ileostomy
For some people, a pouch is not possible and they must have a permanent ostomy bag.
People can live long, active and productive lives with an ileostomy. In most cases, they can engage in the same activities as before the surgery, including sports, outdoor activities, traveling, etc. However, it may take some time for you to adjust. Several ostomy systems are available to choose from and it will be necessary to learn how to use the system, as well as how to care for the skin around the opening. There are no specific dietary restrictions for a person with an ileostomy, but it is important to drink plenty of fluids to avoid dehydration and the loss of salts and minerals. It is also helpful to eat food that can thicken your stool and control diarrhea. For example, applesauce, bananas and peanut butter are good choices.
Many people feel self-conscious or embarrassed about wearing an ostomy bag. However, the bag is fairly flat and is not visible under your clothing. No one needs to know about it unless you decide to tell them.
If you are seeking more information or support, check out the organizations listed below. Speaking with others who have been through the surgery may be beneficial for you.
- The United Ostomy Associations of America (UOAA) provides information on a variety of common concerns for patients, including: pouching systems, taking care of your ileostomy, emotional aspects of surgery, and diet recommendations.
- The J-Pouch Group is an online community that provides information about J-Pouch surgery and life after this surgery. It contains discussion boards and live chat rooms.
Some complications may occur after the surgery, including infections or blockages. If stool does not come out of the opening for four to six hours, and you have cramps or you are nauseous, you may have a blockage. If this happens, let your parents and your doctor know as fast as possible.