Special Concerns for People with J-Pouches
After having an ileoanal reservoir procedure for the treatment of ulcerative colitis or familial polyposis, you will have a reservoir or "J-pouch." A J-pouch is made from the end of the small bowel and attached to the anal canal to form a pathway for the passage of stool.
Your body will need some time to adjust to having a J-pouch. The following information and recommendations will help you make those adjustments:
After you are discharged from the hospital, you will take Imodiumor Lomotil or a fiber supplement such as Metamucil, to control your number of bowel movements. Metamucil and other "bulk" laxatives act by absorbing excess fluid in the stool. Do not take any extra fluid with Metamucil, despite the directions on the bottle. The thicker your stool, the less likely you are to have leakage. Do not take more than eight Imodium or Lomotil a day. Also, it is very important to note that you should never take Imodium and Lomotil together.
Some people have found it more effective to take Lomotil by placing it under the tongue for quicker absorption. This does not work with Imodium. Some people find the liquid Imodium works better than the tablets. Taking medications before bed should reduce your night time trips to the bathroom. Some patients also take Pepto Bismol.
Frequently, people with ulcerative colitis take the steroid Prednisone to control inflammation of the large intestine. Steroids are powerful drugs and have many side effects. People who have been taking high doses for long periods may have more complications from surgery. Normally, your body increases the amount of its own natural steroid after an operation. If you are someone who has taken Prednisone, your body's natural hormone production has been "turned off" and is unable to produce the additional steroid. Because an operation is a stressful event, your body needs extra steroid to cope with it. Therefore, you will get an extra amount of steroid through your intravenous line (IV) the day of surgery.
After the ileoanal reservoir procedure, your doctor will gradually decrease or taper your steroid dosage until you no longer need any. Before you leave the hospital, it is very important that you have explicit written instructions from your doctor regarding your oral dose of steroid. Under no circumstances should you abruptly stop taking your medication because this may cause serious problems. If the steroid taper is too quick, you may feel like you have the flu or have no energy. If during your taper you feel as though you can't get out of bed, call your doctor to discuss a slower taper. You may also develop symptoms of arthritis in your joints as you taper off. This usually lasts up to six months and then diminishes.
According to a survey of UCSF patients who have had an ileoanal reservoir procedure and have a J-pouch, the majority of patients change the way they eat after their operation. Some people are able to eat more foods compared to the diet they followed with ulcerative colitis and before having their operation. Others have a diet with similar foods. Since many people have frequent bowel movements right after the operation, following a diet can help reduce the number of stools.
- Incorporate new foods into your diet one at a time to see how they affect your stool output. You may find that some foods give you trouble initially, but that you can tolerate them better later.
- Do not skip meals. This tends to make the stools more irritating and loose.
- Balancing starches with foods that tend to give diarrhea is also helpful in controlling the frequency of bowel movements.
- Once your colon has been removed, you will need more salt until your body adjusts to not having a colon. Pretzels and corn chips are good snacks.
- Hot and spicy foods will probably burn on the way out and should be avoided if your anal area feels irritated.
- Seeds and nuts also can be irritating.
- Within three to nine months after surgery, your body will have started to adjust to having a J-pouch. At this point, you should try to eat all types of foods and see how they affect you. Some patients have tried a low glycemic index diet, which includes foods that are high in fiber and cause a slow rise in blood sugar, to help control their bowel movements. Resources on the Internet and at your local library are available for more information on this type of diet.
- Fluids are important to prevent dehydration. Drink enough fluid so your urine is light yellow in color. Avoid fruit juices, carbonated beverages, drinks with caffeine and straws (swallowed air increases gas). Rather than drinking fluids with your meal, try drinking fluids at the end of your meal, which may help slow down your stool.
- Many people ask about vitamin supplements after their operation when they are limiting fruits and vegetables. It is fine to take vitamins, but they should be chewable or in liquid form, otherwise they may not be fully absorbed.
According to a survey of UCSF patients who have had an ileoanal reservoir procedure and have a J-pouch, about half of the patients have between five to eight stools a day. About 30 percent have nine to 12 stools a day. Older patients – those over 55 – have more stools than younger patients. Less than 8 percent of patients have less than four stools a day. About 9 percent have over 13 stools a day.
As the reservoir adapts and stretches to its normal capacity, the number of stools you have per day should decrease. You will probably have many stools while you are in the hospital, but these should lessen by the time you go home. Often the first stools are without your control while in the hospital, though this is resolved before you go home.
The biggest increase in stools usually occurs after you begin eating. You can expect your number of bowel movements to decrease gradually. The stools will range from watery to a paste-like consistency. By watching your diet, you can avoid foods that tend to produce loose stools. The more frequent your bowel movements, the more itching and burning you will have around your anus.
A combined approach of diet and medications, such as Imodium and Lomotil, may help decrease your number of bowel movements. Most people need to take these medications more frequently right after having their ileoanal reservoir procedure, but only use them occasionally as their reservoir function improves. For some people, adding a fiber supplement, such as Metamucil, Benefiber, Konsyl, Citracel or a generic equivalent, and taking them with half the recommended amount of water, can help thicken their stool and reduce the number of bowel movements.
Nighttime Stool Frequency
Stool frequency at night is a common problem and can be very disruptive of a good night's sleep. More than half of UCSF patients surveyed – about 63 percent – get up once or twice per night to pass stool, and about 24 percent of patients awaken three times or more during the night to have a bowel movement. This can be related to eating late, overeating or eating foods known to cause problems.
Tips for decreasing the number of stools at night include:
- Don't eat late. Wait at least three to four hours after your last meal before going to bed.
- Take an anti-diarrheal medication before going to bed.
- Eat binding foods at dinner and avoid those foods that tend to cause diarrhea.
- Don't overeat at dinner.
Diarrhea occurs when your stool is very watery and more frequent than usual.
Diarrhea can be caused by eating certain types of foods, eating too much of any food, pouchitis and other illnesses like the flu. If you develop the flu early in your recovery and have diarrhea, you may become dehydrated and need to be hospitalized.
Sometimes people have diarrhea because they don't have the enzyme called lactase needed to digest the sugar in milk products. If you feel bloated and have cramps and gas after drinking milk, try not drinking it and see if symptoms go away. You can also try fermented milk products, such as yogurt, hard cheese and buttermilk, as well as soy or goat's milk.
Adding fiber supplements, such as Metamucil, Benefiber, Konsyl, Citracel or the generic equivalent, can help thicken your stool and reduce diarrhea. Gatorade or other sport drinks can also be helpful in treating diarrhea by keeping you hydrated.
Until your body adjusts to your new internal pouch, you may experience some leakage of stool, especially at night. Liquid stool is very irritating to the skin around the anus, so it is important to keep this area clean and dry. Use soft, white, non-perfumed toilet tissue to blot gently after each bowel movement, drying the skin completely. Do not scratch, rub or wipe the skin. It may help to spray water from a squirt bottle. Some people find drying the skin with a blow dryer helps.
For irritated skin around the anus, warm baths are very soothing. Do not apply anything to the skin that burns or irritates. Moist cotton balls may be better for wiping if your skin is very sore. Some people use baby wipes to cleanse themselves. Use a brand without alcohol or scents. Some people tuck a small piece of toilet tissue or a dry cotton ball near the anal opening to protect their skin from small amounts of leakage. Scented soaps and tissues should not be used since these may cause irritation. A protective ointment may be used after each bowel movement to keep the stool off the skin. You may want to wear a protective pad to keep your clothing clean.
Anal itching and burning are often not visible on the outside because the irritated area is actually on the inside. You can look with a mirror to see if your irritation is on the outside skin. Some of the itching and burning is a normal part of the internal healing and will go away in time. Some people have found Pepto Bismol taken by mouth is helpful for the burning.
Sometimes people develop a yeast infection around the anal area. It happens more commonly when people are taking antibiotics, or in women around the time of their period. If you get an itchy red rash, you may need an anti-fungal cream or ointment. This is available over the counter.
Occasionally people are allergic to the preparations they are using around their anus. This is not very common. Some products contain lanolin — if you are allergic to this, check the ingredients of ointments before using.
Mild incontinence or leakage of stool from your J-pouch is a common problem that improves with time as your stool thickens, your pouch stretches and your sphincters become stronger. The incontinence is usually worse at night when your sphincters relax. The looser the stool, the more likely it is to leak. Some people accidentally pass stool when they are passing gas. In time, most people develop an awareness of whether they are passing stool or gas, but initially this can be a problem. It is also important to note that if you develop incontinence later on, you may have pouchitis.
According to our survey, 60 percent of people occasionally pass stool without control, usually at night while in a deep sleep. About 8 percent occasionally pass some liquid stool during the day. About 35 percent notice staining of stool on their underwear at least once a month during the day or the night. Often this can be related to eating something that causes a problem, having pouchitis, overeating, going to bed soon after eating, or just being in a very deep sleep.
Medications, diet and careful skin care are all important during this period of adaptation. A small pad helps absorb leakage. Some people find sleeping on a small towel or pad also is helpful. Before your operation, it is a good idea to buy more cotton underwear.
Dehydration occurs when you lose extra amounts of body fluids, such as from diarrhea, vomiting, sweating in hot weather or with heavy exercise or from not drinking enough fluids. If you become dehydrated, you may feel dizzy, especially when you get up quickly. You may also feel weak, listless and tired. You may also notice that your urine is dark and concentrated. The color of your urine should be light yellow.
Watch your weight closely. If you are having diarrhea, a sudden drop in weight is most likely due to loss of fluid. If you notice your weight dropping a pound or so in a day, drink more fluids, such as Gatorade, broth or diluted juice. Try to eat some crackers, pretzels, or corn chips with the fluids, especially if you are drinking water. This may also be a sign that you are coming off your steroids too quickly and you should call your doctor. Taking medicine for diarrhea like Imodium or Lomotil should help. Call your doctor if you have tried unsuccessfully to slow down the diarrhea with diet or over the counter medications and it has not improved.
If you develop the flu within three months of surgery, you can become seriously dehydrated. Chronic dehydration can put you at risk for kidney stones.
After any operation for the treatment of ulcerative colitis, many patients report an improved sex life because they feel better and have more energy. It is recommended that women avoid intercourse for six weeks after their operation. This allows the reservoir to heal since the vagina and rectum are very close together. According to our survey, 25 percent of women had occasional pain with intercourse. This affected younger women more often than older women.
After surgery, it is not unusual for men to notice temporary changes in their erections from the swelling or inflammation around the nerves. According to our survey, some men reported it took longer for them to get an erection and the erection was not as firm after surgery. In general, the older the man at the time of surgery, the more likely they are to have changes in their sexual function. Although uncommon, some men have permanent changes in their ability to have sexual intercourse. If you experience sexual dysfunction, discuss this with your doctor, who can refer you to a specialist if necessary. New, effective treatments for sexual dysfunction are also available.
Both men and women who have had an ileoanal reservoir procedure and have a J-pouch have become parents. Most of the women have caesarian sections but there are women who have had vaginal births after this operation. Thirteen percent of women in our surgery have carried a pregnancy to term.
Anal sex is not recommended.
You may notice streaks of blood in your stool. This is normal. Sometimes the blood is coming from very irritated skin outside the anus. You can look with a mirror to see if the bleeding is coming from the inside or the outside. If you are experiencing bleeding on the outside of your skin, skin care tips can help treat this.
People decide to have an ileoanal reservoir operation for different reasons. Some want relief from the relentless symptoms of chronic ulcerative colitis and the associated dependence on steroids, antibiotics and other drugs. Others, including those who have mild ulcerative colitis or familial polyposis with few or no symptoms, want to prevent the development of cancer. Whatever the reason for having the procedure, adjusting to life without a colon requires patience and understanding. However, it is important to note that research has shown that more than 95 percent of those who have had an ileoanal reservoir operation are satisfied with the outcome of the procedure.
For patients taking steroids, recovery may pose particular challenges. Being tapered off of steroids may make you feel depressed or not in control of your emotions. Sharing your feelings with your family, doctor and nurses will help you recover. After leaving the hospital, it is recommended that you join a support group with other people who have undergone a similar experience. It takes time to adjust to the new changes in your lifestyle and sharing information can help you adjust more quickly. It can also increase your understanding of not only your own feelings, but also those of family and friends who may be uncertain of how to best help you with your recovery. UCSF has a support group that meets approximately every two months. We will mail or email you meeting dates. A professional mental health expert may also help you through this difficult period.
Like any major operation, fatigue is common after having an ileoanal reservoir procedure. Nighttime stools also contribute to fatigue. It is recommended that you take it easy and get plenty of rest during your recovery. If you wake up to go to the bathroom in the middle of the night, you may need to allow for a longer sleep period.
General Tips for Recovery
- Keep busy. Don't stay home because you are having more bowel movements. Most people do not have many bowel movements during the day when they are away from home. They tend to have more when they get home in the evening.
- Start a regular exercise program, such as walking, swimming or playing a sport.
- Many people get frustrated about their progress after surgery and want a quicker recovery. Remember that this is a major operation and you will need time to feel better.
UCSF Health medical specialists have reviewed this information. It is for educational purposes only and is not intended to replace the advice of your doctor or other health care provider. We encourage you to discuss any questions or concerns you may have with your provider.
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