Briefly share your illness journey, what was the diagnosis, how long were you ill, and was the decision to have ostomy surgery yours or was there an emergency operation?
I was diagnosed with Crohn’s Disease in 2000. My disease worsened in 2013. After many years of steroids and IV drug therapy the damage was done. Precancerous cells were showing up in my colonoscopy results. In Oct. 2015 it was decided to do a total colectomy. I was given an ileostomy. I named him Jean Claude VonOstomy. I had been very sick for many years, and the last three years I rarely left the house and began to work from home. Even though I had a year to prepare myself with what was coming, it was still a difficult decision and journey.
What was your biggest fear?
Dealing with a bag. How does it work? How will it change my life? Will it improve my quality of life? With Crohn’s, I was familiar with how the disease worked, I knew where every bathroom was within a 25-mile radius of my home, at any time of travel, the toilet paper they provided, and the force of the flush. I was constantly aware of my limitations. So, with this surgery, I wondered how these issues would change. Would I be happier, healthier?
Was there something you were worried you would not be able to do after your ostomy surgery?
I love to travel. I’d been to Egypt, England, Scotland and all over the U.S. My travel had been very limited for the three years prior to surgery. After my surgery, I did not know if I would be able to travel and go where I wanted to go. Could I fly? Tolerate long bus rides? I just didn’t know how this was going to work.
Did those fears become a reality or were you surprised you could actually do what you were worried you couldn’t?
Those fears did NOT become a reality. I studied all the recommendations for traveling with an ostomy. The United Ostomy Associations of America, UOAA was an essential source of information for me. I prepared myself for journeys. I learned along the way what worked and what did not. I felt so much better physically, that I decided to go where I wanted to go, when I wanted to go. No limitations! There was NOTHING I could not do!
How has your ostomy changed you?
I have become more patient with people, more empathetic. I try and understand that not everyone is on the same page of life. I appreciate each and every day that I am given and try to live my life to the fullest. At 62, I know I have more behind me than in front of me, so I try to live accordingly. I try to be an example to my children and grandchildren that life is precious, so it’s important to take care of yourself.
What helped you most during your recovery?
I had a tremendous support group around me, surrounded by family and friends. They encouraged me daily. My God carried me through the worst times. I felt His arms holding me in my darkest times post-surgery. This period of my life was the worst physically, but the best spiritually. My faith carried me through. God also put into my life some wonderful WOCN nurses whom together, we started up an ostomy support group (affiliated with UOAA) for the central Texas area, where there was none before. Through the help of advisors, I was able to find the best products that worked for me.
Did something help prepare you for your operation? If so, what was it?
I did some research on my own. I had been a medical transcriptionist in my career and I had just enough medical knowledge to be dangerous. I tried to research only on trustworthy sites, so as not to fill myself with false information. I spoke with health care providers that I knew, to find out as much as I could about the operation.
What do you wish someone had told you before your ostomy operation?
The first thing I asked for in the hospital after surgery besides pain killers, was to talk to someone who actually had an ostomy. I asked where there was a support group for ostomates locally. There was none. I was very disappointed that no one could talk to me who actually had been through this surgery and lived with an ostomy. That is the main reason I helped to start a support group in my area.
9. Was there a specific WOC Nurse or a doctor who helped you that you’d like to thank?
Karen Simmons, WOCN, Cindy Janeke, R.N., and Dr. Papaconstantinou (colorectal surgeon) with Baylor Scott & White Health Care, Temple, Texas. These were my first line responders. I received the best care at this facility for two weeks post-op. I had a blockage and required an NG tube for three days, and was in the hospital for a long time. All of the nurses I came into contact with were top notch.