Navigating Life with an Ostomy Parastomal Hernia: A Comprehensive Guide

Living with an ostomy can present its own set of challenges, and among them, a parastomal hernia often emerges as a significant concern. This in-depth guide is designed to empower you with the knowledge, strategies, and practical advice needed to effectively manage and mitigate the impact of a parastomal hernia. We’ll delve into understanding what it is, why it occurs, and most importantly, how to deal with it, ensuring your quality of life remains as high as possible.

Understanding the Parastomal Hernia: More Than Just a Lump

Before we explore solutions, it’s crucial to grasp what a parastomal hernia truly is. Essentially, it’s a protrusion of abdominal contents, such as a loop of intestine or omentum, through a weakened area in the abdominal wall, specifically adjacent to the stoma. Imagine your stoma as a carefully constructed opening, and over time, the surrounding muscle and fascia can stretch or tear, creating a “pocket” where internal organs can push through. This results in a bulge or lump around the stoma, which can vary in size from barely perceptible to quite prominent.

Unlike an incisional hernia, which occurs at a surgical incision site, a parastomal hernia is unique to ostomy patients. The continuous pressure exerted by abdominal contents, combined with factors like surgical technique, underlying tissue quality, and postoperative strain, all contribute to its development. It’s not a sign of failure on your part, but rather a common complication that many ostomates encounter.

Why Does It Happen? Unpacking the Root Causes

Understanding the “why” behind parastomal hernias is the first step towards prevention and effective management. Several factors contribute to their formation:

Surgical Technique: The initial creation of the stoma plays a pivotal role. The size of the fascial opening (the hole in the muscle layer) through which the stoma passes is critical. If it’s too wide, it provides ample space for herniation. Conversely, a hole that’s too tight can compromise blood flow to the stoma. The goal is a snug fit, and achieving this consistently can be challenging.
Increased Intra-abdominal Pressure: This is perhaps the most significant contributing factor. Activities that increase pressure within your abdomen put strain on the stoma site. Think about coughing, sneezing, heavy lifting, straining during bowel movements, or even vigorous exercise. This sustained pressure can gradually weaken the abdominal wall around the stoma.
Obesity: Excess weight places additional strain on the abdominal muscles, making them more susceptible to weakening and herniation. The greater the abdominal girth, the higher the internal pressure.
Age and Tissue Weakness: As we age, our connective tissues naturally lose elasticity and strength. This can make the abdominal wall around the stoma more vulnerable to stretching and tearing. Conditions like Ehlers-Danlos syndrome or other connective tissue disorders can also predispose individuals to hernias.
Malnutrition and Chronic Illnesses: Poor nutritional status can impair wound healing and tissue integrity, making the abdominal wall more fragile. Similarly, chronic illnesses that involve persistent coughing (e.g., COPD) or straining (e.g., chronic constipation) can increase the risk.
Multiple Abdominal Surgeries: Previous abdominal surgeries, especially those involving extensive dissection or multiple incisions, can weaken the abdominal wall, making it more prone to herniation at the stoma site.
Stoma Location: While not always controllable, the precise location of the stoma can influence hernia risk. Stomas placed too close to the midline or in areas of pre-existing weakness may be more susceptible.

Recognizing the Signs: When to Suspect a Parastomal Hernia

Identifying a parastomal hernia early can help in managing its progression. While some hernias are asymptomatic, others can cause a range of symptoms:

A Visible Bulge: The most common sign is a noticeable lump or swelling around the stoma, especially when standing, coughing, or straining. This bulge may disappear or become less prominent when lying down.
Difficulty with Pouching System Adhesion: The irregular contour created by the hernia can make it challenging to achieve a secure seal with your ostomy pouch. This can lead to frequent leaks, skin irritation, and increased worry. You might find yourself experimenting with different flange types or techniques to get a good fit.
Pain or Discomfort: While not always present, some individuals experience a dull ache, pulling sensation, or discomfort around the stoma, particularly after physical activity or at the end of the day. The pain can range from mild to significant, especially if the hernia becomes incarcerated or strangulated (more on this later).
Changes in Stoma Appearance: The stoma itself might appear retracted, flattened, or even pulled in, due to the underlying bulge. In some cases, the stoma may protrude further than usual.
Changes in Ostomy Output: Less common, but a large hernia can sometimes affect the flow of stool or urine, leading to reduced output, constipation (for colostomies), or even bowel obstruction. This is a serious symptom requiring immediate medical attention.
Feeling of Heaviness: A persistent feeling of weight or pressure in the abdominal area around the stoma.

If you notice any of these signs, it’s crucial to consult your ostomy nurse or surgeon for proper diagnosis and guidance.

Non-Surgical Management: Living Comfortably with a Parastomal Hernia

For many individuals, surgical repair of a parastomal hernia is not immediately necessary or even advisable. Non-surgical approaches often focus on managing symptoms, preventing enlargement, and improving quality of life. These strategies are often the first line of defense.

1. Optimize Your Pouching System: The Foundation of Comfort

One of the biggest challenges with a parastomal hernia is maintaining a secure and leak-free pouching system. The uneven surface created by the bulge can compromise adhesion.

Convexity is Your Friend: For a retracted or flattened stoma due to the hernia, a convex flange can be incredibly helpful. Convexity gently pushes on the peristomal skin, encouraging the stoma to protrude and creating a better seal. There are various levels of convexity (soft, firm), and experimenting to find the right one is key.
Flexible Systems: Opt for highly flexible pouching systems that can conform to the irregular contours of the hernia. Many modern flanges are designed to be pliable, allowing them to move with your body and adapt to the changing shape of the bulge.
Moldable Rings and Paste: These products are invaluable for filling in dips and uneven areas around the stoma, creating a smooth surface for your flange to adhere to. Moldable rings can be stretched and shaped to fit perfectly around the stoma, while paste can be used to fill in small gaps or creases. Apply them thinly and evenly.
Support Belts and Garments: This is where specialized support truly shines. A properly fitted ostomy support belt or garment can provide gentle, consistent pressure over the hernia, helping to flatten it and create a more stable surface for your pouch. These are not simply fashion accessories; they are medical devices.
- Types: Look for garments specifically designed for ostomates, often with an opening or pouch to accommodate the stoma bag. They range from simple elastic belts to more comprehensive abdominal binders or high-waisted briefs.
- Fit is Crucial: The garment should be snug but not uncomfortably tight, and it should provide support directly over the hernia. Too loose, and it’s ineffective; too tight, and it can cause discomfort, skin irritation, or even restrict stoma output. Consult with your ostomy nurse for fitting advice.
- When to Wear: Many individuals wear their support garments throughout the day, especially during physical activity. Some prefer to wear them only during exercise or when they anticipate increased abdominal pressure.
Exploring Different Brands: Don’t be afraid to try different brands and types of ostomy appliances. What works for one person might not work for another, especially with a hernia. Request samples from manufacturers and work closely with your ostomy nurse to find your ideal system.

2. Lifestyle Modifications: Reducing Strain and Pressure

Preventing the hernia from growing and minimizing discomfort often involves making conscious adjustments to your daily routine.

Lift Smart, Not Hard: Avoid heavy lifting. If you must lift something, bend at your knees, keep your back straight, and engage your core muscles. Exhale as you lift to reduce intra-abdominal pressure. Better yet, ask for help. A good rule of thumb is: if it feels heavy, it probably is.
Mindful Movement: When getting up from a lying position, roll onto your side first, then push yourself up with your arms. This minimizes direct strain on your abdominal muscles. Similarly, when coughing or sneezing, try to support your stoma site with your hand or a small pillow.
Weight Management: If you are overweight or obese, even a modest weight loss can significantly reduce intra-abdominal pressure and the strain on your abdominal wall. This is a long-term strategy but incredibly effective. Focus on a balanced diet and regular, low-impact exercise.
Preventing Constipation and Straining: For individuals with colostomies, constipation and straining during bowel movements can exacerbate a hernia. Ensure adequate fiber intake (gradually increase to avoid blockages), stay well-hydrated, and discuss stool softeners or laxatives with your doctor if needed.
Gradual and Appropriate Exercise: While heavy lifting is out, regular exercise is essential for overall health and strengthening core muscles. Focus on low-impact activities like walking, swimming, cycling, or yoga. Consult with a physical therapist knowledgeable about ostomies to develop a safe and effective exercise program. Core strengthening exercises, when done correctly and gently, can improve abdominal wall integrity. Avoid crunches or sit-ups that directly strain the abdominal muscles.

3. Pain Management: Addressing Discomfort

While pain from a parastomal hernia is often mild, it can be persistent.

Over-the-Counter Pain Relievers: For mild discomfort, over-the-counter pain relievers like acetaminophen (Tylenol) or ibuprofen (Advil, Motrin) can be effective. Always follow dosage instructions and consult your doctor if you have underlying health conditions.
Heat or Cold Packs: Applying a warm compress or a cold pack (wrapped in a towel) to the affected area can sometimes provide temporary relief from muscle soreness or a dull ache. Experiment to see which works best for you.
Rest: If pain flares up after activity, allow yourself adequate rest.
Consult Your Healthcare Provider: If pain is severe, persistent, or accompanied by other concerning symptoms (e.g., changes in stoma output, redness, fever), seek immediate medical attention. This could indicate a more serious complication like incarceration or strangulation.

Surgical Options: When and Why to Consider Repair

While non-surgical management is often effective, there are situations where surgical repair becomes a viable or even necessary option. Deciding on surgery is a complex process, involving careful consideration of risks, benefits, and your individual circumstances.

When is Surgery Considered?

Intractable Symptoms: When conservative measures fail to adequately control symptoms like chronic pain, persistent leakage, or significant discomfort impacting quality of life. If you’re constantly struggling with your pouching system or experiencing daily pain, surgery might be considered.
Incarceration: This occurs when the contents of the hernia (e.g., a loop of bowel) become trapped within the hernia sac and cannot be easily pushed back in. While not immediately life-threatening, it can lead to bowel obstruction. Symptoms include persistent, severe pain, nausea, vomiting, and inability to pass gas or stool.
Strangulation: This is a medical emergency. It happens when the trapped bowel in an incarcerated hernia loses its blood supply. This leads to tissue death (necrosis) and can result in perforation, peritonitis, and sepsis. Symptoms are severe and include excruciating pain, fever, rapid heart rate, discolored skin over the hernia, and signs of shock. Immediate surgical intervention is required.
Progressive Enlargement: If the hernia is rapidly growing in size, making management increasingly difficult or causing significant cosmetic distress.
Recurrent Pouching Issues: Despite trying various products and techniques, if you cannot achieve a reliable seal, leading to frequent leaks and skin breakdown, surgery may be considered.

Surgical Approaches to Parastomal Hernia Repair

There are several surgical techniques for repairing parastomal hernias, each with its own advantages and considerations. The choice of technique depends on the surgeon’s expertise, the size and complexity of the hernia, and the patient’s overall health.

Primary Repair: This involves closing the defect in the abdominal wall with sutures. It’s often used for smaller hernias or in situations where mesh cannot be used (e.g., infection). However, recurrence rates are generally higher with primary repair alone.
Mesh Repair: This is the most common approach. A synthetic or biological mesh is used to reinforce the weakened abdominal wall. The mesh acts as a scaffold, promoting tissue ingrowth and providing long-term support.
- Onlay Mesh: The mesh is placed on top of the muscle layer.
- Sublay Mesh: The mesh is placed behind the muscle layer, in front of the peritoneum (the lining of the abdominal cavity). This is often preferred as it places the mesh in a stronger anatomical position.
- Intraperitoneal Onlay Mesh (IPOM): The mesh is placed inside the abdominal cavity, directly over the hernia defect, with the stoma passing through a hole in the mesh. Specialized meshes designed for intraperitoneal use are employed to prevent adhesions to the bowel.
Relocation of the Stoma: In some complex or recurrent cases, the surgeon may opt to create a new stoma site (relocation) and close the old hernia defect. This is a more extensive procedure and is typically reserved for challenging situations.
Laparoscopic vs. Open Surgery:
- Laparoscopic (Minimally Invasive) Repair: This involves small incisions and the use of a camera and specialized instruments. It often results in less pain, shorter hospital stays, and faster recovery. It’s often the preferred approach for many parastomal hernia repairs.
- Open Repair: This involves a larger incision. It may be necessary for very large or complex hernias, in cases of emergency (e.g., strangulation), or if previous attempts at laparoscopic repair have been unsuccessful.

Considerations Before, During, and After Surgery

Pre-operative Assessment: Your surgeon will thoroughly evaluate your overall health, assess the hernia, and discuss the best surgical approach. This may involve imaging studies (CT scan) to get a clear picture of the hernia’s size and contents.
Risks of Surgery: Like any surgery, parastomal hernia repair carries risks, including infection, bleeding, damage to surrounding organs, pain, and recurrence of the hernia. Your surgeon will discuss these risks with you.
Post-operative Care: Recovery time varies depending on the type of surgery. You will likely experience some pain and discomfort, managed with medication. Activity restrictions will be in place for several weeks to allow for healing and to prevent recurrence. This will typically involve avoiding heavy lifting and strenuous activity.
Recurrence: It’s important to understand that parastomal hernias have a high recurrence rate, even after surgical repair. This is due to the inherent weakness around the stoma. Continued adherence to lifestyle modifications and support garment use after surgery is crucial to minimize this risk.

Proactive Prevention: Minimizing Your Risk

While not all parastomal hernias can be prevented, especially for those with predisposing factors, taking proactive steps can significantly reduce your risk.

Core Strengthening (with Caution): After your initial ostomy surgery has fully healed, consult with a physical therapist to learn safe and effective core strengthening exercises. The goal is to strengthen the abdominal muscles without straining them. Avoid traditional sit-ups or crunches. Focus on exercises that engage the deep core muscles, such as planks modified for your comfort.
Maintain a Healthy Weight: As discussed, obesity is a major risk factor. Strive for a healthy body mass index (BMI) through a balanced diet and regular, appropriate exercise.
Proper Lifting Techniques: Always practice safe lifting. Bend your knees, keep the object close to your body, and lift with your legs, not your back. Exhale as you lift.
Support Garments (Prophylactic Use): Some ostomates choose to wear a light support garment or belt preventatively, especially during activities that might increase intra-abdominal pressure (e.g., exercise, yard work). This can provide an extra layer of protection. Discuss this with your ostomy nurse.
Quit Smoking: Smoking impairs wound healing and can weaken connective tissues, increasing the risk of hernia formation and recurrence after surgery.
Manage Chronic Cough: If you have a chronic cough due to allergies, asthma, or other conditions, work with your doctor to manage it effectively. Persistent coughing puts tremendous strain on the abdominal wall.
Address Constipation: For colostomates, maintaining regular bowel movements and avoiding straining is crucial. Ensure adequate fluid and fiber intake.
Early Detection and Intervention: Be vigilant for any changes around your stoma. The sooner a hernia is identified, the easier it is to manage conservatively. Regular check-ups with your ostomy nurse are invaluable.

Living Well: Psychological and Social Aspects

A parastomal hernia isn’t just a physical challenge; it can also impact your emotional well-being and social life.

Body Image Concerns: The visible bulge can affect body image and self-confidence. It’s normal to feel self-conscious. Remember that you are more than your stoma or your hernia.
Impact on Intimacy: Concerns about appearance or fear of pain/discomfort can affect intimacy. Open communication with your partner is key. Experiment with different positions or support garments that make you feel comfortable.
Clothing Choices: Finding comfortable clothing that disguises the bulge can be a challenge. Opt for looser-fitting tops or patterns that camouflage. High-waisted pants or skirts can also be helpful.
Social Activities: Don’t let the hernia dictate your life. Continue to engage in social activities, but be mindful of your physical limitations. Plan ahead, and wear your support garment if it makes you feel more secure.
Seeking Support: Connect with other ostomates. Support groups, online forums, and patient organizations offer a safe space to share experiences, ask questions, and receive emotional support. Knowing you’re not alone can make a huge difference. Your ostomy nurse can also be an incredible source of practical and emotional support.
Mental Health: If you find yourself struggling with anxiety, depression, or significant body image issues related to your hernia, consider seeking professional counseling. A mental health professional can provide strategies for coping and improving your overall well-being.

Conclusion

Living with a parastomal hernia can feel like an added burden, but it doesn’t have to define your life. By understanding its nature, implementing effective non-surgical management strategies, and knowing when to consider surgical intervention, you can maintain control and live a fulfilling life. The journey involves a combination of vigilant self-care, strategic lifestyle adjustments, and a strong partnership with your healthcare team. Embrace the tools and knowledge available to you, and remember that with the right approach, you can navigate the challenges of a parastomal hernia with confidence and resilience.