Current Environment:

After the operation, you will go directly to the recovery room (also called the "PACU"). You will feel groggy and sleepy. Some patients are so sleepy they don't really remember the PACU. A nurse will be checking your blood pressure, heart rate, and breathing. He or she will ask you to take deep breaths while he or she listens to your lungs. Some oxygen will be gently blowing a cool mist near you face or through a small mask.

Your IV and urinary catheter that we put in during the operation will still be in place. In the PACU, if you are having pain, a nurse will give you pain medication.

You parents may come in to visit you in the PACU. After one to two hours in the PACU, you will be moved to the surgical inpatient area.

Post-operative care

You will probably return to the room that you were in before surgery. Sometimes, room changes need to be done because of other patients' clinical needs on the floor. You will probably have a roommate. Each of you has a TV and a VCR or a DVD player. A child life specialist is available on the unit to provide videos, arts and crafts, games, and other activities.

Once you have arrived on your assigned unit, you will meet your nurse and get settled into a room. You will be somewhat sleepy for the rest of the day. Your temperature, heart rate, breathing, and blood pressure will be checked. You will be shown how to use something called an incentive spirometer ("blow bottle"), which helps show you how big the breaths are you are taking. Your nurse and parents will remind you to do 10 breaths with this every few hours. It helps to inflate your lungs fully until you are up and moving around more often. This will prevent you from developing pneumonia. During the next few days, you will be expected to do many tasks to help in your recovery. One of the most important ones will be learning how to take care of your ostomy. You will not be allowed to go home until you are able to demonstrate that you can care for your ostomy properly.

Pain management

Controlling postoperative discomfort or pain is very important to your recovery. When your pain is controlled, you will sleep better, feel more relaxed, and be able to move around more easily. Before your surgery, your surgeon and anesthesiologist will discuss options to control your discomfort after the surgery. Your nurses will ask you about your pain level.

Pain control is performed by giving pain medicine either through an intravenous (IV) or epidural catheter.

Intravenous (IV) pain management is performed by using a "PCA" or "patient-controlled anesthesia" pump. By pushing a button, you can give a dose of pain medicine directly into your IV catheter. This technique requires you to be an active participant and allows you to use as much medicine as necessary. Several safety mechanisms prevent accidental administration of too much medicine.

A second option for pain management is to have an epidural catheter placed during the operation by an anesthesiologist. This is a thin, flexible tube that is placed while you are sedated. It is similar to the epidural catheters uses for labor pain during childbirth. The catheter tubing is attached to a syringe holding pain medicine. A pump delivers a continuous flow of pain medication providing more continuous pain relief. A doctor orders the amount of medicine delivered by the pump. Since a local anesthetic (like numbing medicine at the dentist) is used, some numbness or weakness may temporarily be noticed after the surgery. Occasionally, people complain about itching resulting from epidural pain medications.

Both techniques of pain control are supervised by the Pain Treatment Center. Nurses and doctors check on you every day and are available 24 hours a day. They can make adjustments at any time to help control your pain. Usually you will need an epidural or PCA pump for three to five days, until you can drink fluids by mouth. Then you will be changed to taking pain medication by mouth.

Eating and drinking

The operation, anesthesia, and medication make your stomach and intestine (food tube) slow down for several days. You will be given fluids and nutrients through your IV during this time. A nasogastric tube (NGT) is used to help keep your stomach empty, rest the bowel while it heals, and prevent nausea and vomiting. The NGT is passed through the nose down into the stomach during surgery. It will stay taped in place near you nose until your stomach and intestine start to pass air (gas) and stool ("poop") into you ostomy pouch. This means that the bowel has begun to function after surgery. You may hear noise from the stoma as it begins to function and air passes from it. Many patients say their stoma is "burping." The amount of air passing from the stoma will decrease in time. Your doctor and nurses will decide when it's time to remove the NGT. It takes a few moments to untape and remove the tube.

Within a few hours of removing your NGT, your nurse will start to give you a small amount of water and ice chips. Go slowly at first. Usually the next day, you can slowly begin having more clear liquid choices (Jell-O, ginger ale, apple juice). If you do not have any nausea or vomiting, you can then start to eat ice cream, milk, and pudding the next day. You will gradually be able to eat regular foods in small amounts. It may take one to two weeks for your appetite to return to normal.

It is very important to drink plenty of fluids once you go home to avoid getting dehydrated. Good choices are Gatorade (because of the potassium and sodium), water, and milk. During digestion, the colon absorbs fluids and some electrolytes (chemicals important to the function of many processes in the body). You no longer have the large bowel or colon to absorb water so you must increase the amount of fluid you drink. The ileostomy will put out a moderate amount of fluid as part of the stool and increase the risk of dehydration and electrolyte imbalance. If you do become dehydrated, you may need to be hospitalized again.

In general, avoid foods that may cause a blockage of the bowel (corn, seeds, nuts, celery, popcorn, and raw vegetables such as carrots).

There is no need to follow a highly restrictive diet. This is a benefit of the surgery for many patients who have had to follow restricted diets before surgery.

Ileostomy care and management

Your nurses will help you start to feel comfortable taking care of your stoma so that you can get back to doing the things you enjoy doing. Once you have healed from surgery, having an ostomy will not stop you from doing activities such as swimming, playing sports, or riding a bike, to name a few things.

The stoma is moist and bright red and looks like the tissue on the inside of your cheek. There are no nerve endings in the bowel so the stoma does not hurt if bumped. Intestinal contents (stool or "poop") drain from the stoma into a pouch that your wear on the abdominal surface. The stoma doesn't have a muscle to control when stool or gas is releases; you must wear a pouch all the time. The pouch attached to your abdominal surface by an adhesive (sticky) backed wafer and is fitted over and around the stoma to collect its output.

Gas passing from the stoma is one of the first signs that the bowel has started to "wake up" and work after surgery. Some kids say it's "farting." It can be somewhat noisy the first one to two weeks after surgery, but it will be less noticeable as you eat a regular diet again. The first stool from the stoma usually begins within one to three days after surgery and is a green liquid. As you begin to drink fluids and start to eat, the consistency of ostomy output will vary from semi-liquid to a thick, pasty consistency. The stool from ileostomy contains enzymes (proteins that help digest the food) that are part of the normal digestive process, but can be irritating to the skin around the stoma. It is important to wear a properly fitted pouch and stick with pouch-emptying guidelines that the nurse teaches you so that you can avoid skin irritation.

Your nurse will teach you how to empty the ostomy pouch whenever it has air or is one-third full. You will learn to put on a new pouch every two to three days and how to care for the skin around your stoma. After about four to six weeks, the swelling goes down and the stoma usually shrinks. A nurse from Boston Children's Hospital will arrange for a visiting nurse to come to your home to continue teaching and answer any questions you may have.

Tubes and drains

You may have many tubes and drains. Remember that each one has a purpose and will be removed as soon as possible.

The abdominal incision has dissolvable sutures (stitches) and will have small, white bandage-like strips across it. It will be covered with gauze and a clear plastic dressing. The first dressing put on in the operating room will be changed at least once before going home from the hospital. The small white bandages begin to fall off usually about 10 days after surgery. You should leave them on for as long as they will stay.

  • Two Jackson-Pratt (JP) drains will be put though your skin into your abdomen during surgery to drain fluid from your pelvis to decrease the risk of infection. These clear, thin drainage tubes will be attached to a soft squeezable bulb about the size and shape of a lemon that has a plug-type closure (like a beach ball cap). The squeeze bulb on the end of the drain tube creates a gentle suction that helps to get the fluid out of your abdomen faster. Your nurse will open this cap a few times a day to empty and measure the drainage into a measuring cup. The drainage in the beginning will be red, and should change to pink then colorless as you heal. The first JP drain is usually removed four to five days after surgery. The second one is often removed the following day. There is a gauze dressing around the tube site which your nurse will change once a day and whenever it becomes wet with drainage.

  • A drain called a Penrose drain is also placed during surgery and comes out from your anus. It helps empty any mucous or bloody drainage from the ileal pouch to prevent it from becoming over distended. It is usually removed five days after your surgery. The pouch will continue to produce small amounts of mucus daily or every few days. For the first few weeks after surgery, it may be tinged with blood. At some point you may have an urge to have a bowel movement. You may need to sit on the toilet and gently push mucus from the anus. The amount of mucus and frequency of discharge varies. The drainage usually does not have an odor.

The skin around your anus may become irritated after any of the surgical procedures, but the irritation is most common after the first stage when the ileostomy is closed. The mucosa or lining of the bowel secretes a slippery mucus to lubricate the passage of stool.. Before the ileostomy is closed, mucus from the unused lower portion of the colon (i.e. the rectal remnant) or the "J-pouch," depending upon which stage of surgery you have had, may seep from the anus and be hard to control. This is temporary and once the ileostomy is closed, the mucus mixes with the stool and is easier to control.

Using soft toilet paper and keeping the area clean and dry is very important. Initially, some people feel more comfortable wearing a liner in their underwear to avoid moisture on their underwear. The treatment for rectal drainage is to protect the surrounding skin. Your nurses will recommend skin care powders, creams, or ointments that will help.

  • A Nasogatric tube (NGT) is used to help keep your stomach empty, rest your bowel while it heals, and prevent nausea and vomiting. It will be removed when your stomach and intestine begin to function normally. Your nurses and doctors will place a stethoscope on your stomach several times a day to listen for bowel sounds.

  • An epidural catheter is a small tube which may be placed in your back. Pain medication may be given through the catheter.

  • A PCA Pump refers to Patient Controlled Analgesia Pump. This has a button that you push to give yourself pain medication.

  • A Foley catheter is placed into your bladder while you are in surgery. This tube drains urine and empties your bladder. While the epidural or PCA pump is in place, you may not feel the sensation of a full bladder and your bladder will not empty normally. This is usually removed six to eight hours after you begin taking pain medication by mouth.

  • An intravenous (IV) catheter is inserted into a blood vessel in your arm to give your fluids and medicines until you are able to drink and eat.

  • Sequential compression devices (SCDs) (sometimes called "pneumoboots") are sleeves that are placed around your legs during the operation. These sleeves are attached to a pump that gently squeezes and then relaxes. These are to help with the blood circulation and prevent any blood clots from forming in your veins. They will be removed several times a day to wash your legs and check your skin. They stay on your legs the first few days after surgery until you are getting up two to three times a day and walking around.

  • You will be shown how to use an incentive spirometer, also called a "blow bottle." This will help inflate you lungs fully and prevent you from taking shallow breaths. Using the incentive spirometer will decrease the risk of pneumonia.

Types of tubes and drains

  • Jackson-Pratt (JP) drains
  • Penrose drain
  • nasogastric (NG) tube
  • epidural catheter or "PCA" pump
  • Foley cathater
  • intravenous (IV)
  • compression leg boots
  • incision or suture line


You will be on bed rest after you return from the PACU. The next day (post-op day #1) your nurse will help to get you sitting up at the bedside. The following day (post-op day #2), the nurses will help to get you out of bed and into a chair to sit for a while. On post-op day #3, the nurses will help you start to walk. This may be a little scary with all the tubes you have in place. You may also be a little weak. Each day you will feel stronger and need less help getting out of bed and moving about.

You can shower within a few days after the operation as long as the clear dressing covering the incision is still on. If it has already been removed, you may not shower until seven days after surgery. You should not submerge (sit) in a tub until post-operative day 10.

When you are discharged home from the hospital, you may not do any strenuous activity or heavy lifting for the first several weeks.


  • contact sports
  • bike riding
  • rollerblading or skating
  • skiing
  • or any other activities that may require heavy lifting for 3-4 weeks.

You will probably not be attending school the first week you are home. You may want to think about returning to school the second week but maybe for only half-day sessions. Speak with your doctor about this before your are discharged home.

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