Is this Surgery Right for Me?

Every person is unique. That's why no two individuals will respond exactly the same to a specific medication, and not everyone is a candidate for a particular surgery.


For some people with disease of the colon (large intestine), an "anal sparing" operation may offer an alternative to a permanent ileostomy.


During ileal J-pouch anal anastomosis surgery, the surgeon removes the entire diseased colon and nearly all the rectum. However, the anal muscles are left intact so that elimination remains relatively the same.


This article will talk about the reasons for ileal J-pouch anal anastomosis surgery, what you may expect, and the benefits and risks of this operation.


Be sure to explore your options with your physician.


What are the reasons for ileal J-pouch anal anastomosis surgery?

Reasons for this surgery as well as some reasons not to have the surgery (contraindications) are summarized in the table below.


          Reasons for Surgery 

  • Ulcerative colitis
  • Familial adenomatous polyposis 

 
         Contraindications 

  • Crohn's disease
  • Those who have had their anal muscles removed
  • Weak or injured anal muscles 


 What are the potential risks for patients undergoing ileal J-pouch anal anastomosis surgery?
For people who are otherwise healthy, infections are considered the most common potential risks. They may include:

  • wound infections
  • urinary tract infections
  • pneumonia, and
  • intra-abdominal infections if the area of surgery doesn't heal properly.


Note: Bleeding and the chance of needing a blood transfusion are also possible risks. If your blood count is high enough, we recommend that you donate some of your own blood before surgery. That way, if you need transfusion, we give you back your own blood, which is safest.


What are the benefits of this surgery?
The absence of a permanent ostomy eliminates the concern of many people about their body image. Satisfaction with this procedure has been high.


Remember: Life after ileal J-pouch anal anastomosis surgery is different. It will take time, patience, and trial and error to adjust to this lifestyle change. See the series of entitled "Life After Surgery" for tips on managing your pouch, follow-up screenings, and more.


If you would like, your surgeon can arrange for you to meet someone else who has had ileal J-pouch anal anastomosis surgery. Often patients who have had this surgery offer to speak to other patients about their experiences.


Knowledge Is Power
Your surgeon, her nurse and assistants are always happy to answer any questions you or your family may have about ileal J-pouch anal anastomosis surgery and the recovery process. Together, you and your doctor can determine whether this operation is right for you.


Preparing for Surgery

 

Always Be Prepared
It's normal to feel anxious and to have questions when you are facing any kind of surgery. A little preparation can go a long way towards helping your surgery and recovery go as smoothly as possible.


  • Jot down a list of questions in advance to discuss with your surgeon and nurse. Don't be shy: there are no "stupid questions." If it is important to you, it is important to your doctor. Many people find it helpful to have a family member or friend attend the meeting with the doctor before surgery. When you are feeling anxious, it is natural to forget what the doctor tells you. By writing down his or her response to your questions or by having a friend with you, you can be sure to remember everything.


  • Be sure to carefully follow the instructions your surgeon gives you.


  • Inform your surgeon of any special needs you may have—from diet to medications.


Below are other tips that can help you as you prepare for surgery.


Medicines
Discuss with both your doctor and anesthesiologist (the physician who will be putting you under for the operation) any prescription, over-the-counter medicines, vitamins, and herbal supplements that you take.


Note: Aspirin and some other over-the-counter drugs can interfere with blood clotting and cause increased 

bleeding during surgery. This is also true of some herbal supplements, (i.e., St. John's Wort, Ginkgo biloba, and others).


You may want to simply write out a complete list of medicines and supplements with the dosages. Make a few copies: one for the surgeon, one for the anesthesiologist, one for the nurse, and an extra that you should keep on hand. Or, if it is easier for you, bring all your medications, over-the-counter medicines, vitamins, and herbal supplements when you visit the surgeon prior to your surgery.

If you are taking medications, check with your surgeon or anesthesiologist to see if you must take the medication or if you can skip it the day of surgery. For instance,


  • If you are taking blood pressure medicine, your doctor may tell you to take it on the morning of your surgery with a small sip of water.
  • If you have diabetes, be sure to check with your doctor about taking your medication—whether it be insulin or pills. Your doctor will tell you how to adjust your dosage for surgery.
  • If you have been on prednisone, you will need more doses of this medicine before surgery and for a short time after surgery. Never stop taking prednisone abruptly—stopping too quickly without slowly decreasing the dose can be dangerous. If you are taking prednisone or have taken it within the six months before surgery, you will usually be given an intravenous dose of a similar steroid medicine before and after surgery.


Be sure to tell the anesthesiologist if you have ever had a bad reaction to any kind of anesthesia.

Let your doctor know what pain medication has worked for you in the past and which pain medicines have not.


Allergies/Adverse Drug Reactions
Tell both your doctor and anesthesiologist if you have drug allergies or other allergies. Be sure to relate any bad reactions to certain medicines you have experienced in the past. For instance, some people cannot take codeine because it makes them nauseous. Other people are allergic to penicillin.

You may want to write up a list of allergies and give copies of the list to the surgeon, anesthesiologist and the nurse.


Remember: Be sure to mention any allergies to tape or latex.


Exercises
Your surgeon may prescribe special exercises to help strengthen your anal muscle before your operation.


Blood Transfusions
Although blood is screened very carefully, there are still risks associated with blood transfusion and many people are concerned about receiving blood transfusions. Ask your surgeon if you can donate your own blood prior to surgery.


Diet
The day before your surgery, you will be on a clear liquid diet for the whole day or part of the day.

You will also be given a bowel preparation and may receive an antibiotic. Be sure to follow the instructions.


Remember: Have nothing to eat or drink after midnight before your surgery—unless your doctors have told you to take specific medicines. This includes chewing gum, mints, and hard candies.


Hospital Stay
In most instances, you will come to the hospital the day of your surgery.


In some cases, the enterostomal therapist (ET) or ostomy nurse will see you that morning and mark the location of the temporary ostomy in case one is needed. In some cases, the surgeon will mark this site.


Your ostomy nurse will discuss the operation and answer any questions you may have. After your surgery, he/she will instruct you on the care of your stoma.


A temporary ostomy may not be necessary if you are not on steroids or other immune suppressing medicine. If there is no tension on the area where the ileal J-pouch is connected, this operation can be safely done without a temporary ileostomy. Your surgeon will discuss whether you are a candidate for this.


You may want to have someone stay with you during the first night after your surgery. Ask your doctor or nurse if this is possible.


Plan on a minimum three (3) to five (5) day hospital stay.


Home health nursing will be arranged while you are in the hospital. We strongly recommend home health care to ensure that you know how to care for your temporary ostomy in the postoperative period after you go home.


When it comes to your medical needs, you are your own best advocate. Be open and honest with your physician. Share your feelings about the operation.


It may be reassuring to know that satisfaction with this procedure has been high. The absence of a permanent ostomy has eliminated the concern of many people about their body image.


Finally, remember to enlist the aid and support of family, friends, and qualified members of your personal healthcare team. Together, you can help to ensure the best surgical outcome.


Remember: For any questions about your surgery, it is always best to contact your physician.


The Surgical Procedure

 

What can I expect during ileal J-pouch anal anastomosis surgery?
The large intestine (colon) and nearly the entire rectum are removed through an incision in your abdomen. In some cases, the surgeon then strips the inner lining of the remaining rectum.


An ileal J-pouch (which looks like the letter "J") is created. The J-pouch becomes a reservoir for waste and replaces the function of the rectum. The surgeon constructs the pouch from about 10 to 11 inches of ileum (small intestine) and attaches it to the anal muscle so that elimination remains relatively the same.


Since the entire small intestine is left intact, digestion remains essentially unchanged.


In many cases, a temporary "loop" ileostomy is created. This allows waste to be diverted into an external pouch, while the surgical area heals without the danger of irritation or infection from bacteria in stool. The loop construction of the stoma allows for a simpler reversal of the ostomy with less pain and a shorter recovery time.


If there is no tension between the pouch and the anal area, and if you are not taking drugs that delay healing (such as prednisone), the operation is sometimes performed in one step without a temporary loop ileostomy.


Remember: A temporary loop ileostomy is just that: temporary. If you have a temporary loop ileostomy, it's important to protect the skin around the ostomy. Be sure to see "Going Home: Part III" for how to care for your temporary ileostomy.


How long will the operation take?
Generally, the amount of time required to perform the surgery can be as short as three hours or as long as six hours. This depends on your condition and the complexity of the surgery.


How quickly can I expect to recover from surgery?
The speed of your recovery depends on many factors, including your disease state, your age, and your overall health.


Remember: Everyone recovers at his or her own pace. Try not to compare yourself to others in similar situations because what may apply to one person may not apply to you.


To learn more about what you may experience post-operatively, check out "After Surgery: Recovery in the Hospital."


Will there be a follow-up surgery?
If you have a temporary ileostomy, you will have a second surgery about eight weeks later to reverse it. This second surgery is a much shorter operation with a more rapid recovery time. This is because the incision for the closure of the ileostomy, which is just around the stoma, is smaller—about two inches wide.


In some cases; however, your surgeon may have to reopen the first incision to clear out some scar tissue. It is common for scar tissue to form in the bowel as part of the healing process. Removing the scar tissue will help ensure that the intestine is able to function properly.


You'll find helpful information about preparation and recovery in "The Second Surgery."


After Surgery: Recovery in the Hospital

Ileal J-pouch anal anastomosis surgery is in most cases a two-step process.


The first surgery removes the entire colon and all—or nearly all—of the rectum (total proctocolectomy).


What is known as a J-pouch (because it looks like the letter "J") is constructed from 10 to 12 inches of your small intestine (ileum) as a reservoir for waste and replaces the function of the rectum. The pouch is connected to the remaining anal muscle so that elimination remains relatively the same.


During the procedure (in most cases), the surgeon also creates a temporary "loop" ileostomy to allow the bowel to heal and to protect the newly formed J-pouch.


The second surgery, which usually takes place eight weeks later, reverses the "loop" ostomy.


In this article, we will talk about what you can expect to experience following the first surgery—ileal J-pouch anal anastomosis surgery.


Remember: Everyone's experience is different. Much of what you experience will depend on your disease state, your age, and your overall health.


Be sure to give yourself time to mentally prepare for what you may experience postoperatively. Share your feelings about the operation with your doctor and nurse. Express your concerns before and after surgery. That's what your healthcare team is there to address.


Pain
Unfortunately, everyone will experience a certain amount of pain postoperatively. Yet, your medical team can do a lot to help make you more comfortable.


Most patients choose a PCA (patient controlled analgesia) pump to achieve optimum pain relief.


The pump allows you to administer pain medicine at set intervals—usually every 10 minutes—through your intravenous (IV) line. Your doctor can adjust your dosage up or down, according to your individual needs.


Some patients choose an epidural catheter for pain relief, as is commonly done for pregnant women who are in labor. A small tube is inserted into the back, and pain medication is delivered to this area.


Remember: There is no reason for you to suffer needlessly in pain. Let your surgeon or nurse know right away if your pain medication is not working effectively, so he or she can make the necessary adjustments. If you are in pain, you tend not to breathe deeply, which clogs up your lungs and causes fever.


  • You also will have a bladder catheter (tube) in place. The catheter is inserted during surgery to keep the bladder empty throughout the operation. Afterwards, it helps keep you comfortable until you are strong enough to get up and go to the bathroom. Usually, the catheter is removed on the second or third day after surgery.
  • Temporary drainage tubes are inserted during the operation to remove fluids or bloody drainage. These will help the area to heal properly. Drainage tubes are usually removed between the first and fourth postoperative day.
  • Lastly, you may have a sore throat because of a tube that helped you breathe during surgery. Lozenges can help soothe your throat.


Remember: The tubes are only temporary. However, they are necessary for you to heal and help minimize the potential risk of infection.


Discharge from the Anal Area
Your anal muscles were stretched during surgery. Therefore, it is common to experience some anal leakage. Swelling can also contribute to anal leakage—much like a swollen hand, your anal muscles cannot grip tightly.

The drainage can be watery to bloody. This is normal. It can also have a strong odor and look like stool. This drainage will often continue until the ileostomy is reversed in the second operation.


Remember: It takes time for the anal area to heal. For added comfort, some patients find that a cotton pad helps—especially at night. The most absorbent and least expensive pads are pressed cotton "makeup removal" pads that are sold in the cosmetics area of most grocery or drug stores.


Initially, after surgery you will not be allowed to eat or drink until you have no nausea and in some cases until bowel function returns. You will be able to have ice chips and will continue to receive intravenous fluids. In fact, most people are not hungry following surgery.


How soon bowel function returns varies among individuals, which is normal. For some people, bowel function returns in 24 hours, while in others it may take several days.


Most folks wonder how they can have a bowel movement when they have not eaten in days. This is possible because you produce about a quart of digestive juices every day, whether you have eaten or not. The passage of this liquid waste is a sign that your bowel function has returned.


Once bowel function has returned and you are not nauseated, you can expect your diet to be gradually advanced—beginning with clear liquids (i.e., juices, Jell-O, popsicles). You will graduate to full liquids (i.e., ice cream, milk, cream soups) and then soft, bland foods (i.e., eggs and toast). This is your meal ticket home.


Remember: Most people don't have much of an appetite at first. It is best to begin your intake slowly. Eat and drink what you can, but do not force yourself to eat. And be sure to chew your food thoroughly.


After surgery, you feel full after only a few bites of food. You may not be able to eat large meals. It is often better to have many small snacks throughout the day.


Restrictions
With a temporary ileostomy, it is best to proceed slowly with any bulky fiber in your diet. Non-digestible dietary fiber can cause a food blockage in the small bowel near the abdominal wall or stoma. Foods to avoid include:


          Foods That Can Cause A Blockage

  • Seeds
  • Nuts
  • Coconuts
  • Popcorn
  • Chinese vegetables
  • Food skins
  • Meat with casings (i.e., sausages) 
  • Raw mushrooms
  • Celery
  • Carrots
  • Oranges
  • Broccoli
  • Cauliflower
  • Raisins 


 

Remember: If you had to restrict your diet before your surgery because of diabetes, heart disease, high blood pressure, or other medical reasons, you will have to continue to do so.


Getting Out of Bed
On the first day after surgery, your healthcare team will help you get up to walk. Pain medication may be given beforehand to make it more comfortable for you.


Even if you can only take a few steps in the beginning, walking is important for the recovery process. It also helps decrease the risk of pneumonia as well as other postoperative complications. Additionally, walking helps bowel function to return more quickly.


What You Should Do

  • To get out of bed, turn to your side and use your arm to push up, avoiding strain on your abdomen.
  • Deep breathing exercises are important to prevent pneumonia after surgery. Periodically, let out your breath and inhale as deeply as you can, let the air out slowly. Repeat 3 times in a row. You will probably be given a small breathing exercise device that will help you with this.
  • If you need to cough, bend your knees up, and press a pillow to your stomach and hug it as you cough.

Remember: Everyone heals at his or her own pace. Try to eat sitting up in the chair, rather than in bed. Walk as much as you can. Don't be shy to ask the nurse for assistance if you need it. Every step, however large or small, counts towards your recovery.


Ostomy Nurse
During your hospital stay the enterostomal therapist (ostomy nurse), will teach you how to care for your stoma, advise you where to buy your ostomy supplies, and address any other personal concerns you may have.


Remember: If you have any questions, your ostomy nurse is just a phone call away.


Reaching Out
It is normal to have periods of depression, either while in the hospital or after you return home. It may be reassuring to know that your enterostomal therapist is there to provide support and can even arrange for you to meet someone else who has had J-pouch surgery.


Sometimes, talking to someone who has "been there" and is now living a happy, active life may be a great source of comfort and encouragement to you.


Remember: You have just had a major operation—a grieving process is normal. Don't keep feelings bottled up. Express your feelings and go with your emotions. Talk to your spouse, a close relative or friend who can listen. Most important, be patient with yourself, adjusting to a different lifestyle takes time and perseverance.


We're Here for You
Your doctor, her nurse and assistants are always happy to answer any questions you or your family may have about ileal J-pouch anal anastomosis surgery and the recovery process.


Remember: Read and discuss the postoperative instructions with your nurse. Ask questions if you are unsure about something or need further explanation. There is no such thing as a "stupid question." If it's important to you, it's important to your doctor.


Going Home
You will be discharged in three to five days, when you are eating and not showing any sign of infection. You will be given a prescription for pain medication. Before you are discharged, your physician and nurse will arrange for home healthcare, if needed in your case.


You also should be given the name of the home healthcare agency and its telephone number should you need assistance before the first visit.


Postoperative Appointment
Be sure to contact your surgeon's office if you have not received a postoperative appointment. Most appointments are within two to three weeks after you have been discharged from the hospital.


Remember: You must bring with you all of the ostomy supplies that you need to change your ostomy pouch to your surgeon's office so that he or she can examine your stoma. Your pouch may also need to be refitted.


Being informed about your surgery, asking questions, and sharing your feelings will help your recovery go as smoothly as possible.



Going Home: Part I

Below you will find tips and suggestions on such topics as your emotions and talking with your children. We also will discuss important issues including pain, gas, diet, and fluids and hydration.


Your Emotions
Most people like to feel in control of their emotions. Yet, the physical and emotional stress of surgery can throw even the strongest person for a loop. Why? Because your body is responding to normal physiological change.

When the body is under stress, it produces a hormone to get us through the tough time. After a major stress—such as surgery—is over, the body abruptly turns off this hormone. This often makes us feel depressed and emotional. These feelings usually pass in a short period of time.

If you are feeling down, don't give in to depressive behavior such as sleeping all the time or just doing nothing. Instead, try to get up and move around. Sit in the sun; watch a funny movie, or talk to someone who makes you feel good.


Remember: People who care about you want to help. Let them know that one of the best ways that they can help you is by letting you talk about your feelings. And don't be afraid or too proud to ask for practical help such as shopping for groceries or running the vacuum cleaner. In a very real way, you will be helping your family and friends by giving them a way to offer you support.


Talking Helps
Talking to people with whom you feel comfortable is very important. Share your feelings with your family and friends. Many people tell us that sharing their experience made them closer with their family and friends.


Explaining Your Surgery to Your Children
If you have small children, you may wonder how to explain the surgery to them. Children tend to sense when we are trying to hide something from them. Their imaginations will think up situations much worse than they really are.


For most children, a simple explanation of why you needed surgery and how it will help you get better will satisfy them. Your family lifestyle and your own feelings will help you to decide whether or not to show them your ostomy.


Pain
By the time you are ready to go home, you will still be feeling some pain. To help control the pain, you will receive a prescription for pain medication when you are discharged from the hospital.


The pain should continue to lessen. As it does, you may want to use Extra Strength Tylenol instead of stronger pain pills. Aspirin and drugs like ibuprofen (i.e., Motrin) may cause stomach irritation and shouldn't be taken on an empty stomach.


Remember: Avoid alcoholic beverages when you are on pain medications, since they can cause the medicines to have a much stronger effect.


Gas
Unfortunately, most people suffer gas pain or cramps after surgery. This can last for several weeks. To relieve gas pain or cramps, you may try taking simethicone products such as Gas X or Phazyme, a gel cap that dissolves in the lower intestine. Beano, which is an enzyme, also helps some people. These are all non-prescription and are available in most drug and grocery stores.

Certain foods or liquids can cause gas. You may want to avoid the following:

          Foods and Beverages That Can Cause Gas 

  • Dried beans
  • Broccoli
  • Corn
  • Hard cheeses
  • Mushrooms
  • Cauliflower
  • Spinach
  • Dairy products
  • Peas
  • Cucumbers
  • Radishes
  • Onions 
  • Carbonated beverages
  • Beer
  • Milk 


Other things that can cause gas formation include: poor fitting dentures, sucking on mints, smoking, straws, talking with your mouth full, lung diseases such as asthma or emphysema, or anything that causes you to swallow more.


Overeating and/or drinking too much liquid during a meal, can cause the stomach to empty early and increase the amount of gas caused by digestion.


Diet
When you first return home, you probably will not have much of an appetite. Though, in general, you will have no restrictions on your diet, you should be careful to introduce bulky fiber in your diet slowly.


In patients with an ileostomy, non-digestible dietary fiber can cause a food blockage in the lumen of the bowel near the abdominal wall or stoma. Foods to avoid include:

          Foods That Can Cause A Blockage

  • Seeds
  • Nuts
  • Coconuts
  • Popcorn
  • Chinese vegetables
  • Food skins
  • Meat with casings (i.e., sausages)
  • Raw mushrooms
  • Celery
  • Raw Carrots
  • Oranges
  • Broccoli
  • Cauliflower
  • Corn 

 

Remember: It is usually best to begin eating slowly. Eat what you can, but don't force yourself to eat. And be sure to chew your food thoroughly.


Other Dietary Restrictions
If you had to restrict your diet prior to surgery because of diabetes, heart disease, high blood pressure, or other medical reasons, you will have to continue to do so after surgery.


Fluids and Hydration
You may have a tendency to dehydrate quickly. That's because fluids are absorbed in the colon. Without a colon, you must be careful to drink plenty of fluids such as water and Gatorade. You may find that you need to drink as much as 6 to 8 glasses of fluids a day to keep yourself adequately hydrated.


Additionally, most patients with ileal pouch anal anastomosis&mdash:who have a temporary ileostomy&mdash:need to take Lomotil or Imodium to avoid dehydration.


This is because the temporary ileostomy is about three feet upstream from where the pouch is sewn to the anal muscle. As a result, there is less bowel working to absorb fluids.


Both medications work about the same. (One Lomotil pill works similar to one Imodium capsule.) Most patients will need to take one to two tablets or capsules before meals and at bedtime. Your doctor will advise you on which medication is best for you.


Monitoring Hydration
A good indicator of your hydration status is the amount and color of the urine you pass.

  • You should be urinating 5 to 6 times a day, and the urine should be a light to mid-yellow.
  • If urine is odorous, deep yellow, and only small amounts, you should increase your fluid intake.


Remember: Nausea, vomiting, diarrhea and excessive sweating can also contribute to dehydration.


Going Home: Part II

In this article, we will talk about dehydration, diarrhea, and infection and give you tips on how to handle these problems.


Symptoms of dehydration include:

  • Weakness
  • Dry skin, dry tongue
  • Fatigue
  • Blurred vision
  • Shortness of breath
  • Muscle cramping
  • Dizziness upon changes of position—i.e., standing from a sitting position


What Should You Do?
Drink Gatorade, Pedialyte or sports drinks as they contain electrolytes and salts the body needs. However, be sure to read the labels of sports drinks and to check with your doctor before using them.


Measure urine and stool output with a measuring cup. Keep a record of the amounts for a 24-hour period. This information will help your doctor decide which treatment is best if your symptoms do not improve.


If symptoms continue for more than 24 hours, call your surgeon's office.


Diarrhea
Anyone can get diarrhea. For people with liquid waste output, diarrhea is an abnormal increase in the volume of waste.

  • Loop Ileostomy Output—The normal output of a loop ileostomy should not be more than emptying half a pouch-full five times a day, or half to one quart per day.
  • Number of bowel movements after Ileal J-pouch—Normally should not exceed five to six stools a day or half to one quart per day. More than this is considered diarrhea.


What You Should Do
If you feel you have a virus or generally upset stomach, use common sense remedies for 24 hours.

For instance, do not eat roughage such as salads or fresh fruits and vegetables. Avoid milk and milk products, as well as spicy, fried, or greasy foods, since these can all cause gas. Also, do not drink caffeinated beverages. Caffeine acts as a diuretic and makes you urinate more, which can contribute to dehydration.

Consume the BRAT diet: Bananas, Rice, Applesauce, and Toast.


Remember: Drink plenty of fluids—at least 8 eight ounce glasses a day. To help replace the salts the body loses from diarrhea, beverages high in sodium (i.e., bullion and added table salt) can help. To replace potassium, try drinking orange juice or eating bananas. Again, Gatorade and other sports drinks are excellent sources of salts and electrolytes.


Some over-the-counter antidiarrheals (i.e., Imodium) can often help control your diarrhea. You may take up to eight caplets a day or two to four teaspoons four times a day of the liquid Imodium.


Note: Since Imodium is an over-the-counter medicine, some insurance companies will not pay for it.

Most patients with ileal J-pouch anal anastomosis surgery will need to take two Lomotil or Imodium pills four times a day (before meals and at bedtime).


Following ileostomy closure—until the pouch stretches and the number of bowel movements decrease—most patients will need to continue taking these medicines for at least six months.


Sometimes bulking agents such as Citrucel can thicken the stool and slow the volume. In this case, mix Citrucel with 4 ounces of water. Be sure to wait 30 minutes before drinking anything else. Citrucel may be taken up to four times a day.


If you continue to have symptoms of dehydration, your stool output remains above one quart, or if your urine volume is less than a quart, call your physician.


Infection
Generally, for people who are otherwise healthy, infections are considered the most common potential risks. They may include:

  • Wound infections
  • Pneumonia
  • Intra-abdominal infections if the surgery doesn't heal properly


What Should You Do?
Call your doctor if you have a temperature above 101.5 F.

If you have pain on urination, foul smelling urine or blood in your urine, call your doctor, you may have a bladder infection.


Watch the incision for any excessive drainage, odor or redness. Be sure to have the home health nurse check your incision, if in doubt. He or she will notify your surgeon if something is wrong.


Going Home: Part III

Your surgeon created a temporary "loop" ileostomy to allow the anal area to heal without the danger of irritation or infection from bacteria in stool.


Caring for Your Loop Ileostomy
While you have a loop ileostomy, an ostomy wafer and pouch protect your skin from irritants contained in stool. Stool from the small intestine can literally burn the skin if it is on the skin very long. A home health nurse will visit you at home to make sure that the ostomy wafer fits well and that you empty and change the pouch correctly. The nurse will also help you to order the correct stoma supplies.


If your skin becomes irritated or burned or if you have any questions or concerns, check with your home health nurse who is an enterostomal therapist or contact your surgeon's office.


The stool from an ileostomy does not smell like stool from the colon and may have a pungent odor. The pouches are odor-proof. There should be no odor except when you empty your pouch. You should only need to change the ostomy wafer an average of two times a week.


For more information about caring for your ostomy, you may want to check out the United Ostomy Association's Web site.


The Stoma
The stoma looks like the inside cheek lining in your mouth. Because the stoma has no nerves, it has no feeling.

Don't be surprised if the stoma bleeds easily when wiped. This is normal.


Following surgery, the stoma will be swollen. As the swelling goes down, your pouch must be refitted to protect your skin from getting irritated.


Since the stoma has no muscle, you will not be able to control the flow of stool. The small intestines make stool all the time, so trying to keep the pouch empty and clean all the time is impossible. The volume of stool will vary, depending on how much you eat or drink.


Blockages
A person with an ileostomy cannot get constipated. If the output stops for more than six hours, something is wrong.


An obstruction occurs when stool or vegetable matter plugs up—blocks—the bowel, usually near the stoma.

What causes blockages? In the early postoperative days, substantial swelling in the small intestine and in the tissues surrounding the stoma can cause blockages.


Other times, blockages can occur for a number of reasons, including:

  • Not chewing your food sufficiently
  • Eating too much fibrous food in combination with binding food, i.e., peanut butter and bananas

    Note: It's especially important to avoid crunchy peanut butter, which can block the stoma.
  • Eating fibrous foods such as broccoli and popcorn that can cause obstructions. Be sure to check the "foods to avoid" list for other such foods in "Going Home: Part I."
  • Not drinking enough fluids
  • Scar tissue in the abdomen causing a "kink" in the bowel. Sometimes, scarring also can cause the opening of the stoma to be too small for stool to pass through.


About one of ten patients develop a blockage after surgery. These usually go away on their own and rarely require surgery.


What Are the Symptoms of a Blockage?
Usually, people complain of feeling all right and then getting nauseated and having abdominal cramps. They also complain of decreased or noisy stoma output or an increased volume of clear watery stool. Sometimes, the stools stop completely. A person may also have abdominal distension, abdominal pain, and vomiting, or the stoma may become swollen.


What Should You Do?

  • Try a clear liquid diet (i.e., chicken broth, Gatorade, Jell-O) for a day or so.
  • A heating pad placed on your abdomen might help ease the cramping—do not burn yourself! A hot bath is often helpful.
  • Stop taking any antidiarrheal medications (i.e., Imodium, Lomotil, and codeine).
  • If you don't see any swelling, lie down and try to relax. Try lying in the knee to chest position with the buttocks in the air.


If the symptoms persist beyond 24 hours, call your doctor. Tell your surgeon what your symptoms are and what remedies you tried. You may need to be admitted to the hospital for fasting and intravenous fluids for several days before the symptoms go away. Surgery to fix this problem is seldom required.


Going Home: Part IV

 Some frequently asked questions that patients have following ileal J-pouch anal anastomosis surgery are:

  • How will I feel when I go home?
  • Are there any activities that I should avoid?
  • Are there any rules regarding basic hygiene?
  • How will the surgery affect my sex life?


The following information should answer these concerns.


Activities
While you were in the hospital, you spent a lot of time in bed. Once you get home and are a bit more active, you will feel much more tired. This is normal.


Pace yourself and allow adequate rest periods. However, it is important that you be up more each day, so you can regain your strength. Be patient, but persistent, and you will begin to feel your strength and energy return to normal.


Some basic do's and don'ts are as follows:

          What You May Do 

  • Climb stairs
  • Lift a gallon of milk or anything less than 20 lbs.
  • Walk—Walking is an excellent exercise.


           What You May Not Do

  • Lift anything heavier than 20 lbs. Heavy lifting can cause a hernia and pain.
  • Any exercise that strains the abdominal muscles, including sit-ups, crunches, and weight lifting

At first, you will probably find it difficult to get up from your bed or a nap on the couch. The best way to get up from a flat position is to turn on your side and push yourself with your arms.


Hygiene
When you return home, you may shower. However, you should not take a bath for a week. It is usually hard on the abdomen to get in and out of a bathtub, so we do not recommend taking a bath until you are stronger.

You also may not swim for at least one week after you get home.


Sex
Following major surgery, you may not feel like having sex. This is a normal response. Your body takes time to heal and adjust. Vaginal intercourse is not recommended until six weeks after your surgery to allow time for healing. Check with your doctor.


Many women are concerned about whether or not they can have children after surgery. It may be reassuring to know that women can and have had children after undergoing ileal J-pouch anal anastomosis surgery. However, it is vital to protect the anal area from injury during child delivery.


During the time you have the temporary ileostomy, you might feel that the pouch makes you unattractive. Studies have shown that when there is a good relationship between two people, this is not a problem. Just be sure that the pouch is clean and empty. If you wish, you may tape the pouch up, cover it with a scarf, a cummerbund, or with a pouch cover.


Generally, most patients feel that sexual relationships improve after their operation because of an improved state of general health.


Remember: Try to relax, take your time, and listen to your body. Your body will let you know when sex is okay. When we do not feel well, we just are not interested.


One Day at a Time
While recovering from surgery, it is best to take it one day at a time. Try not to look at everything all at once. Instead, learn to pace yourself and adjust your activity accordingly.


Remember: When it comes to your medical needs, you are your own best advocate. Listen to your body and trust your intuition. If you believe something is wrong, do not hesitate to contact your physician or other qualified members of your healthcare team.


The Second Surgery

 The second surgery to reverse the loop ileostomy is a much shorter operation with a more rapid recovery time. This is because the incision for the closure of the ileostomy is smaller—about two inches wide.

Following these tips and knowing what to expect can help you prepare for your second operation.


Toning Up
Usually, about four weeks after your initial surgery—when postoperative swelling has resolved—your medical team will encourage you to start to do exercises to improve the tone of your anal muscles. Strengthening these muscles will help you to regain control of your bowel function.


Anal Sphincter Toning Exercises

  1. Tighten the anus as you would when trying to hold back a bowel movement.
  2. Hold for a count of ten (10) and repeat five (5) times.
  3. Repeat this exercise four times daily.


Do not be discouraged if you can only tighten your anal muscles for a count of five at first. You will slowly be able to reach the count of ten.


Do not overdo this exercise. Too much exercise can tire the muscle and keep it from working well.


The Second Operation
The procedure to reverse your temporary ileostomy is much easier on your body than the first operation because of the smaller incision.


Do not be alarmed if your surgeon tells you that he or she had to reopen the first incision to clear out some scar tissue. It is common for scar tissue to form in the bowel as part of the healing process. Removing the scar tissue will help ensure that the intestine is able to function properly.


You can expect to be in the hospital for about three or four days.


Preparation
Though you will not have to take a bowel cleansing preparation before the second surgery, you will have to begin a clear liquid diet (i.e., chicken broth, popsicles, and tea) the day before your surgery.


Remember: Unless doctors have told you to take specific medicines, you should have nothing to eat or drink after midnight before your surgery—including chewing gum, mints, and hard candies.


Postoperative Recovery
You will receive pain medication after the surgery. However, it may be comforting to know that the pain will be milder this time.


As with the first operation, a bladder catheter (tube) will be inserted during surgery. It is usually removed the first or second day after surgery.


You will be given intravenous fluids until bowel function returns. Your first meal will be clear liquids. Gradually, you will advance to a regular diet.


Remember: The postoperative recovery time is shorter. Nevertheless, it's important to understand that life after ileal J-pouch anastomosis surgery is different. Try to be gentle with yourself—developing coping strategies takes considerable time and perseverance.


Life After Surgery: Part I

Ileal J-Pouch anal anastomosis surgery eliminates the need for a permanent ostomy and the concern of many people about their body image. Not surprisingly, satisfaction with this procedure has been high. However, it will take time, patience—as well as trial and error—to adjust to this lifestyle change.


In the following article, we will talk about what you may expect after the ileostomy has been reversed.


Anal/Pouch Bleeding
Don't be afraid if you experience a small amount of bleeding around the anal area. This is normal and is usually caused by irritation at the suture line (your stitches).


Diarrhea
The frequency and consistency of bowel movements varies from patient to patient. Usually the first bowel movement occurs two to three days after the operation. To ease the discomfort from your incision, press a pillow against your abdomen.


What You Should Do
After you go home, it is important that you continue to exercise your anal muscles. You also should begin to try to hold back your bowel movement a bit to stretch the pouch.


Remember: The stronger the muscle, as the pouch stretches, the better control you will have.


Bowel Frequency & Urgency
After surgery, when stools begin to fill the J-pouch, you can expect to feel urgency and frequency. It is not uncommon to have 10 to 20 bowel movements in a 24-hour period before you have started to eat solid food and are started on constipating medication.


When you go home and begin to eat a more normal diet, the bowel movements will thicken and decrease in volume. You may feel discouraged at the number of bowel movements you have during the day. You may even have to get up more than once a night.


Over time, the number of bowel movements will decrease. There also are steps you can take to help slow the frequency.


What You Should Do

  • Call your doctor if you have more than six to seven stools a day. He or she will prescribe medication to help decrease the diarrhea and increase the bulk.
  • Thin or watery stools are difficult to hold. Bulking agents (i.e., Citrucel), antidiarrheal medicines (i.e., Imodium, Lomotil, codeine), and change in diet—eating binding foods such as rice—can often resolve this.


Incontinence
It is normal to have some incontinence and/or leakage. Over time, this will resolve as the pouch stretches.

Nighttime incontinence is the most common, and you should be prepared for this. If you need added protection, pressed cotton makeup removal pads are the most absorbent. Place one of these in front of the anal area. Be sure to change the pad each time you urinate or have a bowel movement.


You may find that it is difficult to tell the difference between gas and stool. This can be a frustrating experience. Be patient with yourself, you will gradually learn to tell the difference again.


Remember: It is not uncommon for it to take about six to eight months to be able to tell the difference between gas and stool.


Skin Care
It is very important to keep the anal area free from irritation and itching. An irritated anal area is more likely to send confusing signals and trigger more incontinence.


What You Should Do

  • Examine your skin and notify your surgeon's office if you see any rashes.
  • Do not wipe the anal area with harsh toilet paper. Instead, use baby wipes, which are more suited for delicate skin.
  • Be sure to rinse the anal area with warm water and pat dry. Early on, in some cases, using a hair drier on a low setting is the least irritating way to dry the area after bathing.
  • Wearing cotton underwear will allow air to get to the area so that your skin will not get too moist.
  • Your surgeon may recommend some soothing ointments. There are many products that might be helpful (i.e., Calmoseptine or Criticaid).


Remember: Continue to follow this skin care routine for two to three months after surgery—by which time the number of bowel movements should have decreased.

Everyone who has had this procedure should be sure to carefully follow the advice of your surgeon and nurse. Don't be shy to ask for help when you need it. If you have any questions, your healthcare team is just a phone call away.


Life After Surgery: Part II

Two of the most common questions that patients ask us after having ileal J-pouch anal anastomosis surgery are

  • Should I follow a special diet?
  • Is there someone I can talk to who also has had ileal J-pouch surgery?


The following article will give you some tips about your diet and will provide contacts for mutual support groups.


Diet
People who have an ileal J-pouch anal anastomosis do not have to adhere to a special diet. However, fresh fruits and vegetables tend to make stools looser and more frequent. You may want to avoid these foods for the first two to three months after surgery and gradually add them to your diet in small amounts.


Remember: It is best to practice moderation and eat common sense sized portions. Avoid eating big portions such as an entire pizza or a large salad.


Other Dietary Tips

  • Some folks find that keeping a food diary helps them identify which "trigger foods" cause them problems. This is easy to do. Just jot down in a notebook what you ate, when you ate it, and how you felt afterwards.
  • You should keep your bowel as empty as possible before going to bed.

    If you eat a large meal or drink a lot after 7:00 p.m., you may experience more bowel movements at night. This is particularly true after ileostomy reversal when the J-pouch has not yet begun to stretch and is still quite small.


  • Most patients find that eating a large meal at midday and a light meal in the evening works best for the first six months after ileostomy closure.


Remember: Everyone is different. Foods that cause problems for one person may be well tolerated by another individual.


Support
Adjusting to life after J-pouch surgery can be challenging at times. You may find joining a mutual support group helpful. Just knowing that you are not alone can be a relief.


In some areas, there is an active support group for patients with a J-pouch. Check out your local Crohn's & Colitis Foundation of America (CCFA) chapter or the United Ostomy Association (UOA) for support and a wealth of information.


Remember: Motivation, determination and regular follow-up care are key to helping ensure the best surgical outcome. Enlist the support of family, friends and qualified members of your healthcare team.


Life After Surgery: Part III

 Long-Term Concerns
Most patients do well following ileal J-pouch anal anastomosis surgery. However, you should discuss long-term considerations with your surgeon and nurse.


This article will talk about pouchitis, strictures and blockages, the symptoms of each, and what you and your doctor can do to treat these problems, if they occur.


Be sure to ask your surgeon what the recommended follow-up care is in your case.


Remember: Everyone who has had this procedure should be sure to carefully follow the advice your surgeon and nurse have given you. Don't be shy to ask for help when you need it. Enlist the support of family, friends, and qualified members of your healthcare team.


A Word About Pouchitis
Pouchitis is a common infection of the ileal J-pouch. No one knows why this occurs. Some patients never develop pouchitis, while others may have repeated problems with it.


You should learn to recognize the symptoms of pouchitis, which include any or all of the following:

  • Watery diarrhea
  • A general flu-like feeling
  • Weakness
  • Foul smelling stools.


Antibiotics—i.e., metronidazole (Flagyl) or ciprofloxacin (Cipro)—are usually successful in treating the pouchitis.


Remember: Not everyone develops pouchitis, and for most patients it is treatable.


If your doctor prescribes an antibiotic, be sure to take it exactly as directed. Always finish the entire course of antibiotics—even if you are feeling better.


Taking "good" bacteria such as those found in cultured yogurt is sometimes helpful. Just be sure to get the plain yogurt—not the kind with sugar and fruit or the diet brands. These type of bacteria can also be found in products such as Lactinex and VSL#3.


For some patients, Pepto-Bismol chewable tablets help.


Strictures
It is not uncommon to develop a stricture (narrowing) of the area where the ileal J-pouch is joined to the anal canal. This narrowing can lead to difficulty emptying the pouch of stool, which in turn, can lead to increased bacteria and pouchitis.


Your surgeon can usually easily treat such a narrowing or stricture by digital dilatation (stretching).


Blockages
Anytime you have had any abdominal surgery, you can develop blockages due to scar tissue in the abdomen causing a "kink" in the bowel.


What are the Symptoms of a Blockage?
Usually, people complain of feeling all right and then getting nauseated and having abdominal cramps. They also complain of decreased pouch output or noisy abdominal sounds or an increased volume of clear watery stool. A person may also have abdominal distension, abdominal pain, and vomiting.


What Should You Do?

  • Try a clear liquid diet (i.e., chicken broth, Gatorade, Jell-O) for a day or so.
  • A heating pad placed on your abdomen might help ease the cramping—do not burn yourself! A hot bath is often helpful.
  • Stop taking any antidiarrheal medicines (i.e., Imodium, Lomotil, codeine).


If the symptoms persist beyond 24 hours, call your doctor. Tell your surgeon what your symptoms are and what remedies you tried. You may need to be admitted to the hospital for fasting and intravenous fluids for several days before the symptoms go away. Surgery to fix this problem is seldom required.


Follow-Up Care
Following ileal J-pouch anal anastomosis, a yearly checkup is recommended for examination of the lower one quarter to half an inch of rectum that is remaining.


It is recommended that patients with ulcerative colitis get a blood test once a year to check the levels of a liver enzyme called alkaline phosphatase (ALP). This is done as a screening test for sclerosing cholangitis—an inflammation of the bile ducts that 5 of 100 ulcerative colitis patients can develop.


In patients with familial polyposis, every 2-3 years a scope of the stomach, duodenum and ileal pouch is also performed.


Remember: For any questions about your surgery or your follow-up care, it is always best to contact your physician.