Special to OWM: Support for Ostomy Patients: Friends of Ostomates Worldwide-USA

  Persons with an ostomy face numerous challenges and adjustments. Studies describe initial needs: a stoma site marked by an ostomy nurse specialist,^1,2 a stoma designed with a protrusion to allow the stoma effluent to drain into the pouching system, education by a nurse specialist to acquire the skills necessary to manage the stoma,³ the help and support of a significant other,⁴ and an appropriate, predictable pouching system that provides security as well as protects the peristomal skin. The pouching system must be matched to the stoma size and shape and peristomal skin contours, and the correct wear time must be determined. The adaptation process may require the person with an ostomy to continually assess what system is appropriate for his/her needs.   Many countries do not have manufacturers and distributors of ostomy supplies, leaving people who undergo ostomy surgery without. Imagine if a person who received lifesaving surgery that resulted in the creation of a fecal or urinary stoma lacked access to ostomy supplies. He/she may have to resort to using whatever materials are at hand, such as rags and plastic bags; cope with odor and soiled clothing; endure painful irritated peristomal skin; and be unable to return to activities of daily living. He/she also may be rejected by family and friends and, in the case of lesser-developed areas, an entire village.

  Since 1986, Friends of Ostomates Worldwide-USA (FOW-USA) has worked to provide access to ostomy supplies. FOW-USA receives requests for assistance in obtaining ostomy supplies from individuals and healthcare professionals around the world via its website, www.fowusa.org. These requests come from Central and South America, Africa, Asia, Eastern Europe, and elsewhere.

  One request from the Dominican Republic specified a need for pediatric supplies for a family with an 11-year-old born with no anus or vagina who is dependent on colostomy bags. “At present time [for the last year], she has been using rags, plastic bags, and whatever they can come up with for her bags. She loves school and is very smart. She has stopped going to school because she stinks and gets made fun of by the other children.” The FOW-USA provides supplies to the girl, and through the contact, learned about a local organization that supports hospitals, including children’s hospitals and nonprofit cancer institutions and has since sent supplies to this group.

  Obviously, recipients are grateful. One recent thank you note read, “I have met with the representatives of the government hospitals today and had a fruitful meeting. They extend their gratitude to FOW-USA, and they are very happy with the donation [of ostomy supplies]. It is very clear to them that it will go to the most needy and indigent of their respective hospitals…the appliances will be a big help…they will start an ostomy club in their hospitals to provide support to all with an ostomy.”

  FOW-USA is one volunteer group working to provide ostomates around the world with the supplies. Other organizations involved in this international mission include FOW-Canada, the International Ostomy Association, and humanitarian aid organizations. Moreover, within the ostomy community at large, related groups contribute to providing quality care to anyone who undergoes ostomy surgery. Ostomy nurse specialists, surgeons, suppliers, nursing, surgical and medical organizations, manufacturers, and ostomy support groups all have an important role in supporting people globally with ostomies. For FOW-USA, this support can be provided by donating supplies, making financial donations to support shipping costs, and serving as a volunteer. Ostomy supplies can be sent to the FOW-USA warehouse in Louisville, KY, where volunteers sort the donated supplies and prepare them for shipments.

  The FOW-USA Board is composed of volunteers dedicated to the mission of providing ostomy supplies to those in need. They work hard to inform the ostomy community of the ongoing need for supplies and financial donations used to ship products. You are encouraged to visit their website, www.fowusa.org, to see how you can help.

 This article was not subject to the Ostomy Wound Management peer-review process.

1. Pittman J, Rawl SM, Schmidt CM, Grant M, Ko CY, Wendel C, Krouse RS. Demographic and clinical factors related to ostomy complications and quality of life in veterans with an ostomy. J WOCN. 2008;35(5):493–503.

2. Person B, Ifargan R, Lachter, Duek SD, Kluger Y, Assalia A. The impact of preoperative stoma site marking on the incidence of complications, quality of life and the patient’s independence. Dis Colon Rectum. 2012;55(7):783–787.

3. Haugen V, Bliss DZ, Savik K. Perioperative factors that affect long-term adjustment to an incontinent ostomy. J WOCN. 2006;33(5):525–535.

4. Nichols TR, Riemer M. The impact of stabilizing forces on postsurgical recovery in ostomy patients. J WOCN. 2008;35(3):316–320.