Finding care after ostomy surgery – Do you feel home alone?

December 2, 2013
by Joanna Burgess

Joanna Burgess, CWOCN, was diagnosed with bladder cancer in 1965 at the age of three.  After surgery for an ostomy (ileal conduit), radiation and chemotherapy – she describes being discharged from the hospital with her father and one small brown bag of ostomy pouches.  She states “We were given no instructions; there were no ostomy nurses and my father felt completely abandoned by the medical community”.   Today, with advancements in ostomy surgery and increased availability of WOC (wound, ostomy and continence) nurses, life has improved for new ostomates but there are still great challenges for many.  Joanna offers tips for the new ostomy patient. She currently works as an ostomy nurse in an acute care facility and councils many patients online and in her community.

Patients who have faced ostomy surgery due to bladder cancer deal with a gamut of emotions in adapting to their new ostomy.   Working through the grieving process of anger, fear and sadness is a normal and healthy path to true adaptation and knowing that one can live a successful and happy life without a bladder and with a urinary diversion.   However, the path to finding a happy life can be blocked when the basic needs of living with an ostomy are not met – a pouching system that is free from leakage and leaves the ostomate feeling secure and confident.  There are many reasons why patients struggle with their pouching system.  The aim of this article is to help you understand why pouching systems fail resulting in painful skin conditions and how you can find help.

Due to cost saving measures, most hospitals are limited to the number of ostomy products they can have available to patients.  Their formulary restricts them to basic pouching systems and ostomy skin care products.  Often the initial pouching system works well for long term use.  However, it is not uncommon for a system that works well in the hospital to begin to fail once the patient is home.  Failure may happen immediately or after many weeks or months.

A change in activity level is one reason for failure of a pouching system.  In the hospital a patient is lying in bed, sitting in a chair, or doing simple exercises with physical therapy such as walking in the halls.  Until “normal” activity levels are resumed it is difficult for a WOCN to truly know how an ostomy system will hold up.  Abdominal contours change in every posture (sitting, lying, bending, stretching) etc.  A pouching system needs to adapt to these changes.  A WOCN is not always able to assess all activity levels of a patient prior to discharge to anticipate potential problems.  A significant change in weight (gain or loss) or the development of a peristomal hernia after surgery also causes changes in abdominal contours resulting in pouching system problems.

Physical change in the stoma site is another reason why a pouching system fails.  The size of a stoma changes for up to 6-8 weeks following ostomy surgery.  The stoma will become smaller in size and may shrink down to become more level with the skin (flush) or below the skin surface (retracted) vs. above the skin level (budded).  Significant changes in the stoma site require re-evaluation of the original pouching system in order that adaptations can be made.

A pouching system that fails to maintain a seal results in chronic leaking and leads to skin damage and pain. Skin damage can be as mild as painful redness from frequent pouch changes, to moisture associated skin damage and fungal infections to chronic wounds on the skin surrounding the stoma.  Other problems that can arise are allergic reactions to ostomy products causing severe redness, burning and itching of the skin.

Ideally a pouching system should last an average of 3 days.  If you are experiencing frequent leakages and chronic skin irritation whether you are new to ostomy surgery, or are a veteran ostomate that is suddenly having problems, you should seek help from an experienced medical provider.  Ideally this should be a nurse experienced with stoma therapy – a WOCN.

Finding Help

The most important thing is to seek help sooner rather than later.  Ongoing damage to the skin around a stoma (peristomal skin) is harder to treat the longer the damage has occurred. Yet, many patients report that it is often very difficult to find help from a WOCN after ostomy surgery.   The following are a few tips for seeking care:

  1.  Try to reconnect to the WOCN who originally cared for you in the hospital.  The WOCN may be able to trouble shoot problems over the phone or computer or may have the ability to see you at your surgeon’s clinic.  Many WOCNs are not able to see patients for return appointments because their facility has no established outpatient clinic.  With ongoing strict hospital policies and Medicare guidelines – seeing a patient without being in a formal clinic setting puts the patient and nurse at risk should something happen or go wrong.
  2. Try to seek a WOCN in an established outpatient clinic setting.  Because of the above mentioned concerns, many WOCN’s are working to establish outpatient clinics due to increasing recognition that the need is so great.  To find a clinic or WOCN near you, visit the national WOCN website at www.wocn.org.  In an outpatient setting the WOCN can evaluate your abdomen and can show you a variety of ostomy products and skin care products that may better adapt to your changing needs.  The WOCN can also advise on skin healing and treatment options.  The WOCN website offers patient care information and publications.  You may also get advice on finding care through your specific states WOCN website.  For example in North Carolina our website is ncwocngroup.org.
  3. If you are not successful in finding a WOCN or outpatient ostomy clinic, contact the three main ostomy companies who have skilled WOC nurses who give advice over the phone and can send out trial samples of products.  These companies are Hollister, Convatec, and Coloplast.  Other makers of more specialty ostomy products are Nu-hope, Marlen, and Cymed.
  4. Social media and online support groups offer a wealth of information and emotional support such as BCAN’s support group which is found on Inspire.  These support groups are about patients helping patients. It is important to remember that these support groups are not monitored by WOC nurses and advice is not always technically accurate.
  5. Community support groups offer in- person experiences with others living life with an ostomy.  This is an opportunity to be with others who may have faced similar experiences as yours.  To find a support group in your area look at the United Ostomy Association of America (UOAA) website and through the BCAN website.

You do not have to feel alone in your struggles after ostomy surgery – whether they are emotional or physical challenges.  There is a vast amount of resources available to you and you are encouraged to seek them out.  Ultimately you can lead a happy and successful life – believe it and please ask for help!!

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