I have Crohn’s disease and my surgeon has told me I need a stoma. I’ve been looking at websites and it seems like there are problems with stomas. Should I expect to have complications with a stoma?
Any surgical procedure carries some degree of risk; having surgery with the creation of a stoma is no different. Ideally, surgeons will review the risks and benefits of the procedure prior to any planned surgery. These include the implications of not having the procedure, the desired outcomes of the procedure, and the known/likely risks associated with having the surgery. For abdominal surgery, you would most likely hear about the risk of surgical site infections (a wound infection), of blood clots in your legs (deep vein thrombosis or DVT) or clots to your lungs (pulmonary embolus), or a prolonged return to normal gut function (an ileus). Surgeons will describe the chance, usually in percentages, that you will have one or more complications from surgery. For example, you have a 20% chance of developing a wound infection.
When a stoma becomes a part of your surgical plan, there are risks and benefits associated with it as well. While pre-operative discussions tend to focus on the benefits of an ostomy (e.g., resolution of the underlying disease, improved quality of life), most surgeons or Enterostomal Therapy Nurses do not review potential stomal complications prior to the surgical procedure. Medical and nursing literature clearly describes the challenges associated with living with a stoma, including issues related to the stoma itself and the surrounding peristomal skin, and it is wise to be aware of these. However, some of the most common complications are preventable, so knowing what they might be, and which actions will minimize their occurrence, will improve your experience with the stoma and your quality of life.
Two studies in recent years have identified not only the rate at which complications can occur but, perhaps more importantly, whether those with a stoma can recognize that there is a complication. The first study done in Denmark1 showed that 45% of the participants had some degree of a peristomal skin disorder, and that the majority of those skin disorders were described as “mild”. More concerning was that only 38% of those diagnosed with a peristomal skin disorder actually agreed that there was an issue, and the majority (80%) did not seek any assistance.1 In 2010, Coloplast completed an international study that included peristomal skin assessment. Once again, the data indicated a high rate of peristomal skin complications (60% internationally, 77% in Canada) and low rates of recognition of the disorder and of seeking help.2
While it is concerning that the rates of peristomal complications are reportedly high, the data also indicates that there are issues related to education and awareness of peristomal issues, and a lack of formal follow-up. A study published in 2009 in the British Journal of Surgery3 demonstrated that there are risk factors for stomal/peristomal complications that could be identified prior to surgery, and that a significant number of the complications experienced by the study’s participants happened within 6 months to 2 years after surgery. Though there are currently no established standards for routine follow-up for those with a stoma, combining an awareness of the potential for risk with a follow-up plan with your surgeon and/or ET may lessen your experience with or severity of complications.
Here are some tips that might help you prevent complications, or treat them if they arise:
- Using the principles of ostomy care (Table I), checking your skin with each flange change, and seeking assistance when a problem is identified, will all assist with minimizing your experience with complications.
- Be aware of conditions that may contribute to peristomal complications, such as weight gain or loss greater than 10lbs/4.5kg; if this occurs, consult your ET to see what adjustments might be necessary.
- Also, new stomas will shrink for 4-6 weeks after surgery, so re-sizing of your flange may be needed. Learn about the ideal stoma and ideal surrounding skin contours (Table II); if your stoma and skin contours are not ideal, then appropriate pouching will correct them.
- Recognize that there are some common complications, such as the irritation of stool that has been in contact with your skin (Table III), and seek help as soon as you notice a problem; don’t wait for it to worsen before you contact your surgeon or ET.
It is undoubtedly frightening to be facing surgery for an ostomy, and even the circumstances surrounding the need for such surgery. Preparing yourself by seeking information can sometimes cause more confusion and anxiety; however, knowing that there are strategies to prevent and treat complications can be reassuring. Use the skills and expertise of your surgeon and Enterostomal Therapy Nurse throughout your operative experience. Consult with them prior to your surgery to discuss concerns, meet with them during your hospital stay, and, most importantly, stay in contact after discharge so that you can address any issues that arise together.
Acknowledging the variety of stomal and peristomal complications should not deter you from seeking surgery and a stoma, any more than the surgeon reviewing your risk of a wound infection deters you from pursuing surgery. Being aware and pro-active in the care and management of your stoma may help to reduce your experience with complications, and may also help to prevent complications from occurring. Use available resources, such as post-discharge programs offered by the major companies in Canada (Hollister’s Secure Start®, Coloplast’s CARE® program and ConvaTec’s Life Embrace® program), and stay in contact with your medical team so that your experience with the stoma will be a positive one.
If you do not have access to an Enterostomal Therapy Nurse and need assistance with your pouching system, then the following ostomy supply companies in Canada have toll-free access to customer service representatives who may be able to provide assistance:
|Table I: Principles of Ostomy Care|
|Traditional Care Principles||Additional Considerations|
Adapted from Colwell et al (2004)4
|Table II: Ideal Stoma Construction and Skin Contours|
|Protrusion: stoma protrudes about 1.5 to 2.5cm from the skin|
|Location of lumen/opening of the stoma: at apex/middle of the stoma|
|Peristomal skin contours: flat; no moats, gullies, or creases when assessed in a sitting position|
|Table III: Common Peristomal Skin Complications*|
|Type of Complication||Risk of Occurrence||Contributing Factors||Preventive Measures|
|Irritant Dermatitis(stool in contact with skin; skin becomes denuded or eroded; can burn/itch)
|Mechanical Trauma(accidental removal of skin layers; very shallow, open area to skin)||Unknown||
|Allergic Contact Dermatitis (allergy to one or more ostomy products; can itch, blister)||0.6%50.5%1||
|Peristomal Candidiasis(yeast; starts as a pustule; red, itchy rash, small pinpoint dots at the outer edge of the primary rash called satellite lesions)||1%4||
* This does not represent all possible peristomal complications
1. Herlufsen P et al. Study of peristomal skin disorders in patients with permanent stomas. British Journal of Nursing. 2006;15(16): 854-862.
2. Jensen MK et al. Coloplast Denmark, unpublished data. Used with permission. 2010.
3. Nastro P et al. Multivariate analysis of complications from intestinal stomata: perioperative care/nutrition. British Journal of Surgery. 2009;96(4):28.
4. Colwell J et al. Fecal & Urinary Diversions: Management Principles. St. Louis, MO: Mosby; 2004.
5. Lyon C et al. Abdominal Stomas and Their Skin Disorders: An Atlas of Diagnosis & Management. London: Martin Dunitz; 2001.