That is the positive and negative of having a health situation that nobody sees. Where do we go for support, education or to simply ask a question, if we don’t know others in the same situation? Knowing this frustration exists is what propels me to talk about having an ostomy, rather than feeling a need to hide it. Granted, it is not the first thing I want people to know. But if it is possible to enter it into a conversation, I am more than willing to do so. It is my hope that if it is ever important to another, I am the face they may remember to assist an ostomate.
There is nothing glamorous about an ostomy, like so many other medical situations. But there are between 750,000 and a million of us in the United States, so it is very possible that we interface with an ostomate without knowing. Most ostomates are comfortable with their appliance, do not have skin issues, do not suffer from blockages, and have little need for help. But, of course, those that do have problems, need to know where to go for assistance.
Most calls I receive end with my recommendation to look at the United Ostomy Associations of America (UOAA) website. That is because there is such a wealth of information available, and although I have learned so much over this past decade, there is always more to learn. Additionally, I am on the East Coast, and there are resources all around the country, and that is invaluable.
Another suggestion is to call the medical center where surgery was performed. That is because, typically, the surgeon who performed our surgery, has limited knowledge of resources, as well as answers to questions. Hopefully, there are Wound and Ostomy Continence Nurses available, and even an outpatient Ostomy Center where patients can be seen if there is an issue.
Ostomy Support Groups are a wonderful way to not only feel supported, but to find answers from other ostomates. Some are even fortunate enough to have Wound and Ostomy Nurses at the meetings…a true bonus. Simply interfacing with others who are alike relieves pressure and provides a way of coping that works beautifully.
Another resource for ostomates is to reach out to the manufacturers and distributors of ostomy supplies since they have a great deal to offer patients. There are knowledgeable consultants and ostomy nurses who can provide a great deal of relevant information and recommend new and updated items. This is big business, and these distributors know that if the patient’s needs are met, they will be loyal to that product, that manufacturer. Ostomates are not typically interested in jumping around, and will usually only change products if they feel it necessary.
We have much available to us, but it is up to us to reach out and pursue help. Our superpower is how strong we are, most of us having faced and survived life-threatening challenges. Let’s use that to get what we need, since the reward is well worth the effort.
Great information. Thank you!!
I’ve had an Ostomy since 1987. I worked for over 30 years after my surgery and am now retired. When I was working, my insurance covered all my Ostomy supplies. I’m now on Medicare and am frustrated with the limits on supplies. In fact, last year it cost me over $500 out of pocket. I emailed the UOA regarding this mentioning that Medicare was now reducing insulin costs for diabetics. I have never received an answer from UOA. Any advice?
(I live near you in Scotch Plains, NJ)