Some people with IBD choose to have surgery because the symptoms of the disease become too much or their medications don’t work. For other people, surgery is an absolute necessity because of life-threatening complications or issues.
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 ileoanal 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.
- C3Life is an online community where people with ostomies come together to meet, learn and share real-life experiences and advice. This organization also provides information about living with an ostomy as well as a forum, photo gallery, video gallery, and blogs for patients, loved ones and clinicians.
- 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.