What to Expect after your Ileal Pouch Surgery
Ileal pouch reconstruction is a two-part surgery.
- First, your doctor removes your colon and the lining of the rectum (a total colectomy). Then, he constructs a pouch from a portion of the small intestine. At the same time, he creates a temporary ileostomy. This opening empties the bowel contents or stool, keeping it away from the pouch while it heals. Most people spend about 7 days in the hospital for this surgery.
- After about 8 weeks, the ileostomy is removed or “taken down.” Most people spend 3 to 4 days in the hospital. This second surgery may be delayed if you are still taking steroids (prednisone). You must be off steroids for 3 weeks before having this surgery.
Getting Ready for Your First Surgery
Sometime during the month before your surgery, you will come to the clinic for a work-up visit. During this time, you will learn about getting ready. Someone will talk with you about drinking a bowel prep before surgery. This helps to clean out your bowel and decrease your risk of infection. A nurse will explain the bowel prep in detail. You will also meet with a nurse practitioner who will ask you questions about your health and perform a physical exam. A nurse will mark your abdomen for the ostomy site. You may also meet with a member of the anesthesia staff and have any needed lab work or tests.
In the Hospital
You will have a private room with a private bathroom and shower. This is not an extra charge. You can adjust the temperature to your liking in the room as well. Your family and friends are welcome to visit you during your stay. If you’d like to learn more about visiting, ask your nurse for the handout: Guidelines for Primary Supports and Visitors.
We provide hospital gowns for you to wear. You will be asked to wear one of these gowns during your stay. You will be given a new gown each day or at your request. If it is more comfortable for you, you may bring in loose fitting clothing from home and/or a bathrobe. But be aware that these may get dirty while you are in the hospital. We ask that when you are out of bed, you have something on your feet to prevent falls. We provide you with non-slip socks which we will ask you to wear when out of bed. You may bring in shoes or slippers if you prefer.
We also will provide you with soap, toothbrushes, toothpaste, shampoo, razors and shaving cream, deodorant and lotion, and washcloths and towels. If you prefer to bring in your own items from home, you may. You should try to perform as much of your own hygiene as you are able to do. We will expect that you brush your teeth or do basic oral care at least twice daily. Hygiene is the best way to prevent infection and will become a part of your daily routine while you are here. Plan a time with the NA (Nursing Assistant) to do your bathing and oral care. Ask your nurse when you can shower. It will depend on what kind of wound you have and how many days it’s been since surgery. You will not be able to take a tub bath, or soak under water for at least two (2) weeks after surgery. Your sheets and linens will be changed daily.
Before discharge you will be doing your daily cares on your own, or at the level you were able to before admission.
Feel free to bring items from home that may make your stay here more comfortable. But leave valuable items at home.
The Day of Surgery
Pouch surgery is quite lengthy. It often takes 6 or more hours. Your family and friends can wait in a waiting area in the C5/2 lobby. Your doctor will meet with your family after the surgery is over.
Right after your surgery, you will go to the recovery room. Once your pain is controlled and you are awake, you will be moved to your room. You will meet your nurse and NA and settle in. Your family and friends can visit you in your room.
When you arrive, the nurse and NA will take your vital signs (blood pressure, temperature, oxygen saturation, heart rate, and breathing rate). You may also have a sticker around one of your fingers or toes that is attached to a small machine to keep a constant reading of your oxygen level and heart rate. These vitals signs will be taken very often for the first few hours after you arrive in your room. They will be taken every 4 hours, even through the night. The nurse will listen to your heart, lungs, and abdomen, look at your incision and ostomy and ask about your pain level and any other symptoms you may have.
Another part of the process is a set of admission questions that you will be asked. It may be helpful to have a family member around who can also help answer questions, if you feel okay with that. A nurse may have called you at home ahead of time to ask these questions. If that is the case, you will not need to answer them again.
The standard length of stay, without complications, is 5-7 days. We will work with you to help you meet all of your goals in order for you to go home in that time frame.
If at any point during your stay, your health care team feels that you need more intense care you may be transferred to an ICU (Intensive Care Unit) where the nurses are able to keep a closer eye on you.
The Health Care Team
During your stay, your health care team will create a plan for you which we will update and change as needed. You are a vital member of the team. Input from you and your family is considered in making your care plan. We know that your stay, even one that has been planned, can be stressful. Feel free to raise any questions or concerns to any member of your health care team. Our goal is to help you get better and to be able to care for yourself at home.
Listed below are some of the team members you may meet.
The attending surgeon is the doctor who directs all of your medical care.
The resident and interns are doctors who work very closely with your attending surgeon and you. You can expect visits from your doctors each day to assess your progress. It’s hard to predict when your doctors will visit and visits are often brief. Try to either write down your questions to ask the doctors or let your nurse know what your questions are so that we can help you get your questions answered.
Medical Students are students (future doctors) who help the doctors with your care as well as learn from you as a patient. These students may come to see you a number of times a day with or without the resident doctors.
The Registered Nurse (RN) is the nurse you will see each shift. The nurse will assess your pain, incision, and other symptoms, provide medicines, and create and follow your plan of care. They will also teach you about your care plan and provide updates. The nursing staff will have the most contact with you during your stay and can help you in many ways. Feel free to ask the nurses any questions you may have, they are a great resource to you during your stay.
Nursing Assistant (NA): The NA may be working with your RN to help with your cares such as walking, using the bathroom, and bathing.
You can expect to be assigned 2-3 RNs and NAs in a 24 hour day. They will check on you about every hour during the day and every 2 hours at night. Use the white call light by your bed to let us know any other needs, questions, or concerns you may have.
Pharmacist: During your stay, the pharmacist will review the medicines that you take at home and teach you about any new medicines before you go home.
Case Management Staff: The Case Management Staff is a team which consists of a Nurse Case Manager and a Social Worker. One of them will meet with you during your stay to help arrange the safest discharge plan for you. This plan may include getting special equipment, home health care (to help with your ostomy and incision), or arrange placement at a skilled nursing facility if needed.
Physical and Occupational Therapists: This team will see you if prescribed by your doctors. They will help you to become more mobile and help you to be safe and strong at home.
Registered Dietitian: The dietitian will meet with you to discuss the new diet for home. This includes teaching you about foods that you will be able to eat and ones that you should avoid.
Primary Nurse
Most of the time, the nurse who admits you becomes your primary nurse. Your primary nurse is assigned to take care of you when he or she is working. This allows for one nurse to get to know you and your family, help devise a plan of care in the hospital, and manage your plan for going home. But all of the nursing staff can, and will, take very good care of you when your primary nurse is not working. We make every effort to keep the same nurses involved with your care. If you’d like to learn more about primary nursing, ask your nurse for the handout: Primary Nursing at UW Hospital and Clinics.
Pain Medicine
You cannot expect to be completely pain free. But you should be comfortable enough to complete 4 main goals.
- Get some sleep
- Do your deep breathing and coughing exercises
- Get out of bed and either sit in the chair or walk in the hallways
- Eat (when you are allowed).
You will likely meet with anesthesia doctors in the clinic before surgery to discuss your pain medicine options. There are three ways that pain is treated after surgery, an Epidural (PCEA), a PCA, and pain pills.
- Epidural or PCEA (patient controlled epidural analgesia): An epidural is placed right before surgery starts. A very small catheter is placed in your back (between your vertebrae or back bones) and will give you medicine at a constant rate that blocks the pain and numbs the area around your wound. Often, you can also give yourself more pain medicine through your epidural by pushing a button. This button helps to control your pain and cannot be overused. The machine will not let you. Anesthesia doctors will see you every day and check the medicine in the epidural to make sure it is working as it should. If your pain is still not in control, the anesthesia doctors will discuss ways to improve it. For the first 24 hours after you receive your epidural, the nurses will check the epidural every hour (even through the night). You will also have a urine catheter until the epidural is removed.
- PCAs: PCA stands for Patient Controlled Analgesia, and is often called a pain button. This is a machine that contains a syringe of medicine and a button to allow you to control how much pain medicine you receive. The machine will be programmed to allow only a certain amount that can be given in preset time frames. Your nurse will discuss this with you.
Neither the PCA nor Epidural (PCEA) machines will allow you to take too much pain medicine. But remember that you, the patient, are in charge of pushing the button. Family and friends should not push the button. This is for your safety and to prevent you from getting more pain medicine than you need.
- Pain Pills: Once you are able to eat or drink a liquid diet, you may be offered pain pills instead of your epidural or PCA. We will talk to you about this when it takes effect. Pain pills do not act the same as epidurals and PCAs. Most of the time they are given “as needed” so you must ask the nurse for pain pills when you want them. Also, the pain pills take about 30 minutes to start working, instead of within minutes like the epidural or PCA. The good news is that pain pills work for a longer amount of time. Also, when your pain is controlled with pain pills you are one step closer to getting home!
Let your doctors and nurses know if your pain is not being controlled. If your pain gets out of control it can be much harder to get pain relief. Also, know that there are many types of medicine that can help to get your pain under control, so if one doesn’t work there are others to try.
- Remember, you are the only one who can tell us how well your pain is controlled!
- Before discharge your pain must be controlled with pain pills.
Medicines
A pharmacist will visit with you to confirm the medicines you take at home. Nurses will give you medicines throughout the day. At first, many of them will be in a liquid form that will go into your vein through an intravenous catheter (IV). Some of the doses you take at home in a pill form may be changed to the same amount in the liquid IV form. Once your bowels start to work, they will be changed to pills again.
You will likely get medicines in the hospital that you may or may not take at home.
- Anti-acids help reduce the amount of acid made in your stomach to prevent stomach irritation that can cause ulcers or heartburn. Common types are Zantac® (ranitidine) or Protonix® (pantoprazole).
- Stool softeners help prevent constipation caused by pain medicines.
- Heparin prevents blood clots from forming in your legs and traveling to your heart or lungs or brain. Heparin is given as an injection (shot) either in the back of the arm or in the belly 2 to 3 times a day.
Let your nurse or doctor know if you have any questions about the medicines you are taking.
Catheter and Drains
After surgery, you may have a tube in your nose that goes down into your stomach. This is called a nasogastric (NG) tube. It helps to prevent nausea and vomiting because it removes fluids from your stomach until your bowel begins working again. The NG tube will be removed before you start eating. You will not go home with it.
Sometimes, after surgery you will have drains in your abdomen to allow extra fluid to be removed. If you have any drains from your abdomen, they will be emptied and measured every 8 hours or more often if needed. Sometimes patients go home with the drains in place. If this occurs, the nurse will teach you how to care for your drain at home. Most of the time, these drains will be removed by simply pulling them out before you go home.
You may have a urine catheter placed during surgery. The urine catheter (called a “Foley”) will remain in place until you are able to walk to the bathroom or the epidural is removed (if you have one). Once the Foley is removed you should call your nurse and they will help you to the bathroom. We must measure your urine output. Your nurse will show you how this is done, either with a urinal (males) or a “hat” in the toilet (females). Sometimes, patients cannot pass urine when the Foley is removed and it will need to be put back in. Rarely, it is left in place when you go home. If this happens the nurse will talk to you about what you need to know.
Diet
After surgery you will be given IV fluids to keep you hydrated. To keep your mouth moist, you can use swabs dipped in ice chips and water. After surgery, nurses and doctors will listen for sounds from your abdomen, ask if you are passing gas, or stool through your ostomy, ask if you have any nausea or vomiting, and ask about your appetite. All of this lets the health care team know if your bowel is starting to function or “wake up.”
You can expect that your bowel function will not return for a couple of days. The time it takes for the bowel to start working again varies. It may take from 2 or 3 days to a week.
As you and the healthcare team feel comfortable, you will be allowed to eat. You will start slowly with clear liquids with items like juice, jello, broth, popsicles, etc. You will then move on to full liquids such as milk, ice cream, pudding, creamed soups, etc. Then, you will move on to “real food” or a low fiber diet.
When you start eating, go slowly. Only eat what feels good and tastes good. If you begin to feel sick to your stomach or full, you should stop eating.
A member from the health care team will let you know when your diet has been changed.
We have a “room service” option that allows you to order food for yourself that will be delivered at any time between 6:30am and 9:00pm. You can talk with your nurse about whether you would like to use room service or have a tray made and delivered for you at a set time each day. Let your nurse know if you have any questions about diet or how to order.
A dietitian will visit you before you go home to teach you about the diet you should follow at home. They can answer any questions you may have about certain types of food or restrictions.
Soon after surgery, you should be able to eat what you want. Drink 8-10 (8 oz.) glasses of water daily, mostly between meals. Do not overeat. Avoid popcorn, nuts, chunky peanut butter, wild rice, and corn. These foods can cause a bowel obstruction. Talk with your dietitian about other diet guidelines. Plan to eat a healthy diet and take vitamin supplements to promote healing. See Nutrition Care for You Ostomy Diets (HFFY #293) for diet guidelines.
Before you leave, you should be able to tolerate the ostomy diet, which you will go home on.
Keep in mind that it is easy to become dehydrated when you have an ostomy. Be sure to drink lots of fluids. You may want to sip water or other non-caffeinated drinks all day long.
Foods that cause LIQUID stools |
Foods that THICKEN stools |
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Ostomy
A loop ileostomy is made from a portion of your small bowel. You may notice a small red rubber tubing or “bridge” under the stoma, the opening of the ileostomy. This bridge supports the stoma and allows it to heal. Stomal bridges may be removed before you go home or at your first clinic visit.
The stoma will be red and swollen. The swelling should decrease during the first 4-6 weeks. Because the stoma has a rich blood supply, you may notice some bleeding when you clean around it. This is normal. It should stop on its own. Since the stoma has no nerves, it will not hurt if you bump it. Over time, the sutures around the base of the stoma will fall out.
The stoma has two openings. Stool comes out through the one into the pouch system. The other one goes back into your new ileal pouch (internal pouch). The stool that comes from the stoma will vary in texture from a thin liquid to a soft, unformed mass. Because it contains digestive enzymes, it can irritate the skin. The best way to protect your skin is to empty the bag when it is one-third to one-half full or about 3-7 times a day.
You may pass mucus or some blood from your rectum. You may leak mucus while you sleep. This is normal. To reduce mucus leakage, sit on the toilet 1-2 times a day and at night before bed. Bear down to empty the pouch of mucus. You may want to wear a pad to prevent soiling your clothes.
After your surgery, both your nurse and an ostomy nurse will visit you. They will look at your stoma and measure it to decide what size ostomy pouch you will need. They will talk to you about caring for it at home. During your hospital stay, the nurse will change the ostomy wafer 3 days after surgery and then every 3 days that you are in the hospital. It is done more often in the hospital to let you have time to learn about how to change it and assess and care for the stoma. You must pay attention and take an active part in this process when you are ready. Family members or friends that will be helping you should be present for teaching as well.
Read all the ostomy handouts and watch the videos from the clinic about your ostomy before surgery.
When your ostomy pouch is 1/3 -1/2 full it will need to be emptied. While you are in the hospital we will measure your ostomy output. The nurses will teach you to empty your ostomy.
- Before you leave, you will need to know how to take care of your stoma and change your ostomy appliance alone.
- You will get enough ostomy supplies to last until your first clinic visit.
- Talk to the health care team about any questions or concerns you have about your ostomy. We want to provide you with the teaching, resources, and support that you need to have success at home.
Surgical Wound
You will either have a long abdominal wound that is stapled together or laparoscopic sites that are stapled or glued together. The health care team will check the wound for signs of healing.
If you have staples they will be removed during your clinic visit about 2 weeks after you go home.
Your incision should heal in 10-14 days. Most wound care involves gently cleaning the incisions with soap and water and letting them air dry. You should keep doing this after you go home. Do not soak in a bathtub, hot tub, or swim until your incision is healed. Do not put lotion, powder, or ointments on your incisions.
Check your incisions daily for signs of infection.
- Increasing redness or warmth at incision site.
- Pus-like drainage from incision.
- Excess swelling or bleeding.
- Temperature by mouth above 100.4°F, for two readings taken 4 hours apart.
Your incision will be slightly puffy, pink and may feel numb at first. This is normal. A small amount of clear fluid may also leak from it. If it looks like pus, call the clinic.
Walking
Getting out of bed is a vital part of your recovery.
Starting on the day of your surgery, you should be able to sit at the edge of the bed or in a chair with help from the nursing staff.
The day after surgery you will begin walking with help. You should walk and sit in a chair for about an hour three times each day.
Walking helps the bowel to begin moving and to pass gas and stool.
Walking is also good for your lungs and body strength.
Call for the nursing staff to help you move until it is safe for you to walk by yourself.
Some patients have some pain during walking, so you should talk with your nurse about a time to walk so you may receive pain medicine to control your pain before moving.
Since you may not be moving as much as you would at home, SCDs (sequential compression devices) are often ordered by the doctor. These are sleeves that wrap around your legs. They tighten and loosen to maintain proper blood flow in your legs in an effort to prevent blood clots from forming. TEDs (compression stockings) are stockings placed on one or both legs to prevent blood clots, often used along with SCDs.
Before discharge you will be able to walk safely, either by yourself or with an assistive device (walker, cane, etc).
While you are in bed, be sure to keep moving; shift your hips, turn from side to side, and move your legs. You may feel like you are attached to a lot of machines and may find it hard to move around. Ask the nursing staff to help you. You should move every couple of hours to help prevent pressure ulcers (bed sores) from forming. A nurse or NA will come and help you with your turns until you are able to do them by yourself.
If you’d like to learn more about how to prevent pressure sores, ask your nurse for the handout on Preventing Pressure Sores.
Smoking and Tobacco products
The decision to quit smoking or to stop using tobacco products is one of the single most important things you can do to improve your health and speed your recovery. Besides the effects that smoking has on your lungs, nicotine slows wound healing.
If you are a current smoker or tobacco user, there are many programs to help you quit. Nicotine patches, nicotine gum, and other medicines can be used to help reduce cravings and ease the withdrawal symptoms. Ask your health care team about these programs and medicines.
UWHC is committed to improving your health. If you are a current smoker or tobacco user, you will receive a quit smoking packet from your nurse. UWHC is smoke-free, both inside the building and on the grounds.
Discharge
There are 6 standards that must be met before you go home. These are:
- Be able to eat a low fiber or ostomy diet.
- Be able to walk by yourself or with an assistive device.
- Have your pain controlled with pain pills.
- Be able to pass urine.
- Passing gas and stool through your ostomy.
- Be able to safely take care of yourself at home.
Once these standards are met, one of your doctors will write an order for you to be discharged. At that point, the nurse and the pharmacist will review your discharge instructions. Your paperwork, prescriptions, and appointments will be made. It often takes several hours to complete your discharge.
The pharmacist will meet with you to review the medicines you will be taking at home.
The nurse will review your discharge instructions that include: activity orders, lifting restrictions, your diet, wound care, follow up appointment, and any special instructions. You will also receive phone numbers that you can call if you have questions or concerns.
You can help if you alert us to any special circumstances about your discharge, such as long rides home, limits to when you can be picked up, etc.
At the end of your stay, we ask that you complete a survey you will find in your room (or at home and mail it in) so we are aware of those who have done a great job for you and make changes based on your feedback.
Things to Watch for After Pouch Surgery
Dehydration. This can happen when your stool output is greater than what you eat or drink. That’s why it’s so important to drink extra water and fluids (8-10 8 oz. glasses) during the first few weeks after surgery. If you notice these symptoms, call your doctor or nurse practitioner.
- Increased thirst
- Dry mouth and skin
- Weight loss of more than 3 pounds overnight
- Fatigue
Bowel Obstruction. This is a blockage that may be caused by
- Adhesions (bands of scar tissue that grow across sections of the bowel)
- Hernia (a weakness in the abdominal wall where intestines push through)
- Twisted or kinked bowel
Partial obstruction occurs when the bowel is not completely blocked. Treatment is IV fluids and an NG tube in your stomach. You will not be able to eat or drink until the bowel opens. |
Complete or total obstruction of the bowel requires surgery. |
Symptoms of Obstruction
- Tender and bloated stomach
- Cramping
- Nausea or vomiting
- Temperature of 99º F by mouth or higher
- Unable to pass gas or stool
This can occur even if you are passing liquid stool or mucus. If you think you have an obstruction, call your doctor and go to the Emergency Room.
Steroid Withdrawal. Most ulcerative colitis patients take steroid drugs before surgery. In the hospital, your doctor will taper off the steroids to speed up your healing. If the drugs are tapered too quickly, you may have steroid withdrawal. If you notice these symptoms, call your doctor.
- Fatigue
- Weight loss
- Dizziness
- Nausea
- Vomiting
To read more about this, refer to HFFY #5838, “Prednisone Withdrawal.”
What to Expect After the First Surgery
- 2 Weeks after Surgery: You will see your surgeon. The ostomy nurse removes sutures, staples and the ostomy bridge. You will be fitted with a different ostomy bag. You will have a rectal exam at this visit. Bring questions to ask your doctor.
- 1 Month after Surgery: Flex Pouch exam (also called Pouch Endoscopy) done to check the health of the pouch. No bowel prep needed.
- 6-8 weeks after Surgery: Barium Pouch Study done in GI Radiology to check for leaks and to check that the pouch fills and empties well.
- After normal results, we will schedule an ileostomy “takedown.” The stoma will be closed and put back in the abdomen. The stool will then travel to the pouch and out the anus.
See you on our Surgical Unit!
We look forward to meeting you after your surgery and helping you progress through your hospital stay so that you can return home. Our focus is on you, the patient. If there are things that we can do to make your stay a little better, let us know and we will try to help.
The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.
Last Updated: 06/27/2012
Copyright © 06/27/2012 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. HF#5955
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