Key Management Principles in Managing Patients Undergoing an Ileoanal J-Pouch Procedure

This is the second article in a 2-part series on the proctocolectomy with ileal pouch anal anastomosis (IPAA) procedure in ulcerative colitis (UC), also known as a J-pouch. The first article focused on engaging and educating patients on the procedure indications, identifying appropriate candidates, goals of the procedure, and the surgical steps involved to achieve eventual bowel continuity. Moving forward to the second step usually occurs in a minimum of 3 months but can be longer after the initial total abdominal colectomy procedure (Figure 1). This timeframe allows the patient to get off all inflammatory bowel disease medications, recover nutritionally and reduce risk of infectious complications before moving forward to the second step. In addition, this gives the patient time to get a better understanding of what life is like living with an ileostomy and to decide if they want to move forward with the J-Pouch procedure or keep the permanent ileostomy. Some patients decide that they have finally gotten a life back given the diseased colon is removed and are happy with the life the ileostomy has given them. A majority, however, do decide to move forward and not have a permanent ileostomy. This article will focus on key management strategies for the patient and healthcare providers between when the J-Pouch is formed and the ileostomy is taken down, as well as ongoing J-Pouch function assessments and surveillance once bowel continuity is restored. Ongoing follow-up assessments and surveillance of the J-Pouch is key to optimizing J-Pouch function over time, prevention of complications, improved patient satisfaction, and overall successful outcomes. 

Figure 1.

Second Step with Formation of J-Pouch and Loop Ileostomy

With the formation of the ileal J-Pouch, a diverting loop ileostomy is created so that the final step to take down the stoma and reconnect the two ends of bowel is less invasive and easily performed at the original stoma site. The patient with an end ileostomy that was performed in the initial step with removal of the colon and formation of Hartmann's pouch will need to be educated on the differences between an end stoma and a temporary diverting loop stoma formed with the second step.¹ It is important that they understand that the loop stoma will be in the same location on the abdomen as the end stoma and that it often does not protrude out above the skin as the end stoma but instead may be flush with the skin. In that setting, difficulty in managing a good seal to prevent leakage of stool may be more challenging and may require a convex system to bring out the stoma and close management surveillance by the Wound, Ostomy and Continence (WOC) nurse. It is important that stoma appliance leaks are managed so the surrounding skin does not get irritated and further cause issues with appliance seals. The skin around the stoma is prime real estate and needs to be monitored closely, and irritation issues need to be dealt with expeditiously when they occur. This is where the ostomy nurses play a key role in helping the patients to manage their ileostomy and have a positive experience as much as possible.

Education on the signs and symptoms of dehydration, measures to maintain hydration and a thickened stool output are key principles in patient education with a loop ileostomy. Signs and symptoms of dehydration include fatigue, decreased energy, light-headedness and dizziness on standing, thirst, dark-colored urine, decrease in urination, and a high liquid ostomy output.¹ High output of 1,000 to 2,000 mL/ 24 hours is common with a loop ileostomy since 20% of the distal small bowel is bypassed.^2,3 Patients are advised to drink liquids with meals and snacks but not on an empty stomach. Foods that will act like a sponge to soak up the liquids include starch-based products such as bread, pasta, crackers, pretzels, marshmallows, applesauce, bananas etc. I have found in my practice that patients best understand the concept of balancing liquid and solid intake by using the following explanation: By eating first and then sipping liquids, the foods eaten will soak up the liquids you drink, thereby slowing down the transit time of both through your intestines so the fluids and nutrients have time to be absorbed from the intestines. Drinking liquids without food causes fluids to move rapidly through the intestines with minimal absorption of fluids and nutrients, resulting in a high watery stool output and causing dehydration.^2,3 In addition, patients often have the impression that just drinking more fluids will improve their hydration. However, without eating foods that thicken stool first, the fluids will just rush through and cause more dehydration. They need to continue eating foods first to thicken stool and then drink. Using oral rehydration formulas with electrolytes, such as Pedialyte, Drip Drop, G-2, or other homemade recipes, can help. This is where registered dieticians and WOC nurses are extremely helpful in educating the patients on how to manage their eating and hydration issues. The United Ostomy Association of America (UOAA) has information on this in their Eating with an Ostomy guide as well as a food reference chart to utilize and share with your patients.

The use of antidiarrheal medications, such as Loperamide hydrochloride (Imodium) or Diphenoxylate/atropine (Lomotil), as well as psyllium fiber preparations are also key to thicken stool output and slow down the stool transit time. It is important to remind the patient to take the antidiarrheal medication on a consistent basis, 30 minutes before meals and at bedtime as needed. It is recommended to start out with one dose before meals and bedtime and then increase doses as needed until a thickened output is achieved at least 75% to 80% of the time in 24 hours. The maximum dosage is 8 tablets of loperamide hydrochloride (Imodium) or diphenoxylate/atropine (Lomotil) per day. I tell patients to not follow the box directions, which say take as needed. It is best to be consistent in taking before meals and bedtime to keep the stool thickened and help to get into a pattern of emptying the ileostomy 4-5 times a day.
 

Final Step with Bowel Continuity Restored

Once the ileostomy is taken down and bowel continuity is restored, the same principles apply of eating first and then drinking. High-roughage foods such as raw vegetables or fruit, popcorn, or nuts as well as foods that are high in acid such as tomato sauce or fruit juices cause an increased number of watery stools and/or burning discomfort just inside the anus and near the anal opening. The burning discomfort may be due to acidic foods or from bile salt diarrhea that can be treated with bile salt binding agents such as Colestid (Colestipol) or cholestyramine (Questran).³ Patients either avoid these types of food or limit the timing or frequency with which they include them in their diet. Eating a large meal late at night or after 7 PM can increase a patient's chance of having bowel movements at nighttime. One bowel movement during the night is often normal.⁴ Use of Imodium is again often needed initially to reduce stool number per day and the instructions are the same: take 30 minutes before meals and at bedtime.

It is important to note that most patients eventually do not avoid eating any foods, but each person is unique. What bothers one person may not bother another, so each person needs to try food items one at a time to determine which foods increase symptoms and if symptoms are tolerable. Keeping a diet and stool diary is most helpful in the beginning, as patients quickly learn how dietary intake can influence the number and consistency of bowel movements.⁵The UOAA has a food journal you can utilize and share with your patients.

In the beginning, daily assessment of dietary intake, bowel function, and condition of the perianal skin are important components to understanding and achieving successful outcomes with the ileoanal J-Pouch.⁶ Over time, the J-Pouch will adapt to hold more stool as the patient can delay the passage of a bowel movement: initially for 15-30 minutes, then an hour to eventually several hours, which increases the J-pouch capacity to hold more stool and decreases the number of bowel movements per day, thereby allowing the absorption of fluids and nutrients from the J-Pouch. This adaptation phase may last for up to 1-2 years and may eventually lead to the ability to eat more foods and not require an antidiarrheal over time. Some patients, however, may always require use of an antidiarrheal, if not daily, only at times when they choose to decrease the number of stools, as when going on a trip, flying on a plane, going out for several hours away from a bathroom, or eating foods they know may increase stool number.

Bulk-forming agents such as psyllium fiber preparations can be most helpful in thickening and decreasing the number of stools or leaks per day and night. Again, maintaining at least a thickened stool 75% to 80% of the time can decrease the risk of dehydration. Having 10 or more loose to watery stools per day is a risk for developing dehydration, perianal skin irritation, and burning discomfort.

Frequent wiping with toilet paper that can be rough and harsh also contributes to perianal skin irritation.^7,8 Use of moisturized cleansing pads as well as moisture barrier skin ointments is recommended to protect the perianal skin, especially when stools are loose or high in number, or there is leakage of stool. Toilet paper can feel like sandpaper, and moist cleansing wipes are soft and clean better. In addition, use of anal incontinent pads or butterfly pads help to wick away the wetness or seepage of stool to protect the perianal skin, unlike use of panty liners that protect the clothes rather than the skin. Moisture barrier ointments, such as Calmoseptine, Aquaphor, Desitin, etc., protect the skin and should be used when the patient is experiencing frequent, loose bowel movements and leakage of stool. Loose, watery stool often contains digestive enzymes that are very irritating to the skin.

It is also important to instruct the patient to be sure the skin is dry before applying the moisture barrier ointment. Skin that is exposed to continual wetness can appear denuded and has the potential for developing infections such as candidiasis.^7,8 Use of antifungal powder or ointment is recommended after each bowel movement and at nighttime as needed until the rash subsides. Many J-Pouch patients tell me that having a bidet installed on their toilet to clean their perianal area after bowel movements has made such a difference in their overall bowel and perianal skin hygiene.

Assessing sexual and urinary function after the J-Pouch procedure is particularly important, as most of the surgery is performed in the pelvis with removal of the rectum and placement of the ileal pouch in its place.⁹ The J-Pouch procedure has been associated with a small risk of sexual dysfunction; the risk is greatest in patients who require re-operative pelvic surgery. Postoperative impotence and retrograde ejaculation have been observed in approximately 1.5% and 4% of men, respectively. Transient dyspareunia occurs in about 7% of women, although coital frequency and the ability to experience orgasm remain unchanged. Female fertility and fecundity may be decreased due to pelvic adhesions, although successful pregnancies happen regularly.^9,10 The nerves related to urinary and sexual function may be manipulated or affected by swelling of tissues during the operation, and in males, the erections may initially be weak. The ability to urinate may also be affected, with the urine stream not as strong or difficulty in getting the urine flow started in males. Often, with time and healing of the pouch and pelvic tissues, these symptoms resolve.⁹ Initially, patients often say that when they urinate, they also pass stool, which subsides as healing occurs. If problems continue after healing around 3-6 months, the patient should be referred to a urologist or gynecologist for medical evaluation of any urinary or sexual performance issues. With the laparoscopic and robotic-assisted approaches to J-Pouch surgery, these complications have been minimized.

Pregnancy and delivery are safe in women with an IPAA. Women may experience a transient increase in stool frequency and incontinence during pregnancy due to the fetus growing and being situated next to the pelvic pouch. Women should not be discouraged from childbearing because of the pouch.⁹ Whether vaginal or cesarean delivery is better for women remains controversial. The type of delivery should be influenced by obstetric considerations, and the major consideration would be the risk of needing an episiotomy with a vaginal delivery, as that could cause anal sphincter injury with a high risk for incontinence of stool.^9,10

Ileal Pouch Anal Function and Expected Initial and Lifelong Outcomes

Ileal pouch anal function continues to improve incrementally every 3 months in the first year, and patients may see improvements for up to 1-2 years following restoration of bowel continuity. It is important to assess these patients every 3 months in the first year, as this is the initial adjustment phase in which pouch function improves; the pouch heals and enlarges in size as the patient is able to hold a bowel movement for longer periods of time, and the patient learns to live and function with the J-Pouch. Understanding the expectations of living with a J-Pouch includes the number and consistency of bowel movements each day, how different types of foods eaten can affect stool consistency and frequency, and the usage of antidiarrheal medications to control frequency and leaks of stool as needed.^5,6 The important factors that I use to assess IPAA function at each patient encounter are outlined below (Table 1).

Table 1. Assessment of Ileal Pouch Function

Frequent assessment and surveillance of J-Pouch function within the first year, and yearly thereafter, will ensure the patient has a successful outcome and keeps the patient focused on what good functional results can be expected. I have found that educating the patient on self-management techniques to maintain good functional results and avoid complications from occurring is necessary. Often, these patients start accepting poor functional results overtime and develop a “new normal” as they did when they had UC symptoms. They start losing their perspective over time on what good functional results are with a J-Pouch. They forget to use antidiarrheals or stool-bulking agents, not to drink on an empty stomach, or to call and speak to their health care provider as J-Pouch symptoms worsen. They may develop symptoms of an increased number of watery stools (10-15 per day), nighttime leakage of stool, urgency to pass stool, and perianal skin irritations, all which can be signs of pouchitis, which is inflammation in the J-Pouch.^11,12 These symptoms left untreated can result in a poor quality of life and a chronic inflammatory process that could result in decreased pouch function or eventual pouch failure.

Pouchitis can occur in 50% of J-Pouch patients, and there is no definitive cause, but it is thought to be an imbalance in the microbiome in some patients, long-term use of nonsteroidal anti-inflammatory drugs (NSAIDS), or possibly a narrowed ileoanal anastomosis causing the patient to push hard to pass stool.¹¹ Patients who develop pouchitis say that it feels like they have ulcerative colitis all over again, with symptoms of watery stools that have doubled from their normal frequency, urgency, and abdominal cramping pain. It is key that they call their provider and explain their symptoms in order to get treated with an antibiotic such as Ciprofloxacin or Metronidazole. Usually in 24 hours the symptoms feel better.¹² That is why I tell patients to keep a functional expectations list (Table 2) where they can see it periodically and use it as a reference to determine if they need to call their provider to discuss what is going on.

Table 2. Expectations with IPAA: Good Functional Results

• • 4 to 8 stools per day, best is 4 to 6 per day
  • Liquid to pasty consistency occasionally; formed – aim for 80% thickened stool in 24 hours
  • At least one nocturnal BM
  • Can usually delay BM:
    • at least 30 mins initially, then up to 1 to 4 hours
  • No urgency to pass stool
  • May or may not be able to pass gas without losing stool
  • Most have no leakage:
    • If present, usually at night and only a wetness
    • Older patients are more at risk for leaks, as are those with handsewn ileoanal anastomosis initially.
  • Use perianal moisture barrier ointments as needed to prevent rash around the anal area.
  • Can eventually eat most foods:
    • Spicy, high roughage, or fatty foods may increase stool frequency or loose stools.

Remember: Pouch adaptation and function improves throughout the first 1-2 yrs.

Routine J-Pouch Surveillance                    

Given that pouch adaptation and function can improve over time or complications develop, it is imperative that patients are seen every 3 months the first year, then at 18 months to yearly thereafter.^5,6 During these visits it is key to assess pouch function as noted in Table 1 and educate the patient on the expectations of living with a J-Pouch (Table 2). Education on what patients can do for self-maintenance to achieve good results, such as use of antidiarrheals, proper diet, and use of perianal ointments, is also very important. In addition, assessment of blood and vitamin levels on a yearly basis is important to ensure the patient has no nutritional deficits, which can occur given the colon is gone and the pouch is now functioning like a rectum holding stool.

Routine blood workup consists of: Complete Blood Count, Comprehensive Metabolic Panel, Iron and Iron Binding, Ferritin, Folate, Zinc, Vitamin B12 and 25 Hydroxyl Vitamin D.¹⁴ A pouchoscopy to evaluate just above the J-Pouch, the pouch, and the rectal cuff, if present, is also indicated at 1 year to rule out any inflammation or pre-cancerous dysplasia in the J-Pouch or retained cuff.^12,13 It is then repeated every year if issues are found. If no issues are found, you can decide on a frequency of every other year or every 3 to 5 years, based on risk. In addition, a stool sample for fecal calprotectin as an inflammatory marker can be utilized to assess for inflammation between recommended surveillance pouchoscopies as needed.¹⁵

Close management and education of patients going through the second and third step of the ileoanal J-Pouch procedure is key to overall patient satisfaction and successful outcomes. The most common complications include dehydration and stoma complications due to a loop stoma with minimal stoma protrusion and appliance seal issues. Ongoing WOC nurse education and assessment of stoma site is key to successful patient self-management and decreased complications of their stoma. Diet management with a registered dietitian is also crucial for patients with a stoma. After the takedown of their stoma with bowel continuity, education on J-Pouch expectations is key to keeping patients aware of and able to recognize what good pouch function is.Often, these patients have developed a “settling” mindset with symptoms they had with UC in the past and project that same mindset with their J-Pouch function as symptoms worsen over time. They accept poor outcomes and complications such as pouchitis without thinking about what is causing this. Most important is educating these patients on what good functional results are with a J-Pouch, and when they deviate from those expectations, they must call their provider and not except poor functional results. Ongoing surveillance via follow-up visits keep any potential functional issues or complications in check and ensure the best possible outcomes for our J-Pouch patients.

Michele Rubin is an Advanced Practice Nurse certified as a Clinical Nurse Specialist in Gastroenterology Nursing. She has 44 years of experience in Inflammatory Bowel Disease (IBD) at the University of Chicago Medicine (UCM) ranging from positions in nursing leadership and IBD research to IBD Clinical Nurse Specialist in Colorectal surgery. She is also the Associate Director of the IBD Center. Michele works closely with the UCM multidisciplinary IBD patient management team with the IBD surgeons and gastroenterologists in managing the care of IBD patients and families. She works in colorectal surgery with IBD patients and initiated the J-Pouch clinic to ensure patients adapt successfully and get ongoing surveillance. Michele is a known leader and lecturer on IBD across the country for various organizations. She has authored and co-authored numerous articles and participates in research focusing on IBD. She is a professional member of the Crohn’s and Colitis Foundation and is a past honoree of the National Crohn’s and Colitis Foundation’s Uniting Care & Cure Award. She participates on the National Crohn’s and Colitis Nurse and Advanced Practice Provider Committee and is Director of the APP Preceptorship program focused on IBD specialty training for new APPs. Michele was also a past Midwest Regional and National GEM (Giving Excellence Meaning) Awardee for “Excellence in Community Care” by Nurse.com. Please send inquiries to advocacy@ostomy.org. Information in this article was provided by UOAA. UOAA does not endorse particular products, manufacturers, providers, or other sellers of ostomy products. This column was not subject to the Wound Management & Prevention peer-review process.