Ostomy is a lifesaver, and our Support Group is celebrating Global Ostomy Day with a beautiful walk!
Perhaps the single most important thing any Girl with Guts can and should do is know how to advocate for herself. This ability to protect ourselves needs to start at the beginning of recognition, and sometimes, even before a diagnosis is actually made. Here are some thoughts:
- Learn your anatomy. The ability to explain where pain is located, for example, is extremely helpful. Rather than saying “I am in pain” you will be empowered to explain “I am having sharp pain in my lower right quadrant.” Such phrasing immediately guides the medical community to work toward a diagnosis.
- Keep a log of tests you have had in the past that might not only provide key information but rule out those tests or procedures one has already had.
- Wear a medical alert bracelet if there is a diagnosis, with emergency contact information and your name. It should be worn on the left wrist since that is where pulse will be taken by first responders.
- Speak the language! For example: “I have Crohn’s Disease and I am in a flare. I need IV fluids and pain medication, and I typically do well with Toradol.” The ability to succinctly explain what one needs potentially eliminates hours of guessing and possibly second-guessing treatment.
- If no diagnosis has been made, state clearly that “I am being worked up for IBD and am in terrible pain, bleeding, etc.” Know what is normal for you and what will require medical attention. For example, “I am at the ER because I am bleeding rectally.”
- Be patient but persistent. Hold those who evaluate you accountable for providing necessary tests and services. You are the only one who knows how you feel, so assume you will need to have your plan in mind before you are in the position of advocating. Knowing ahead that you will most probably need a c-t scan, try not to eat before going to the Emergency Room.
- Whenever possible, bring along someone to be your advocate. Covid eliminated that security many of us depended upon but having someone who can explain things when you are in too much pain or have a high fever, is invaluable.
- For two decades, I carried my story with me wherever I went. Mine is not one that fit into any category and required explanation, so it was easier to communicate in bullet points than explain in prose. I used to say that when I had a bowel obstruction, it was like being in transition labor and having to explain to a classroom of students how I became pregnant! Since I was in the hospital as often as every three weeks for decades, having the story, with the head of the hospital’s name and phone number, was a real bonus.
We are all going to need to advocate for ourselves or a loved one at some point. Learning to be prepared is key to saving precious and irreplaceable time; getting the ear of someone who can make a difference in a timely manner is a lifesaver, an incredibly invaluable tool.
Ellyn is a proud and appreciative Ostomate who uses her experience and knowledge to support, guide and empower others. A hysterectomy at 42 years old led to the creation of a powerful and destructive adhesion. It strangled and perforated her small intestine, which resulted in the loss of 2’ of ileum, weeks in the hospital to overcome the potentially deadly effects of the rupture, only to find herself in the same situation three months later. That small bowel obstruction resulted in the loss of 2’ of mid jejunum, and a series of small bowel obstructions for over 20 years. Ellyn has had 23 abdominal surgeries, including a sub-total colectomy and several hernia repairs and lysis of adhesions. Eventually, Ellyn received the lifesaving gift of an ileostomy, and with that a new life!
A national advocate, Ellyn was named the MIGHTY ADVOCATE by the United Ostomy Associations of America at the Philadelphia conference in August 2019. That honor was presented by Advocacy Manager, Jeanine Gleba, in recognition of Ellyn’s successful efforts to create an Outpatient Ostomy Center at her medical center, as well as starting and facilitating three Ostomy Support Groups. She is poised to start her fourth this fall.
Ellyn writes for THE PHOENIX Magazine, and has published her first book, SO MUCH MORE THAN MY OSTOMY: LOVING MY PERFECTLY IMPERFECT BODY! She has a blogsite entitled morethanmyostomy.com (more than my ostomy.com) which is updated every week.
Blessed with Bruce, her incredibly supportive husband, and her two daughters, Allison and Emily and their families, she is extremely close to her sisters, mom-in-law and wonderful friends.