My journey to having BCIR surgery was a battle, but worth it. I am now living life without the pain and fears I previously faced each day with. I had spent years vomiting daily, and only having a bowel movement once to twice a month. Every time I did move my bowels, it was only after I blacked out. Without a syncope episode there was no bowel movement. I suffered from rectal spasms and pain. I had a hysterectomy to correct help with the endometriosis pain and I had rectocele repairs, yet there was no relief, and my symptoms only became worse. I live in a little village just outside of Rochester, NY. Rochester is known for amazing hospitals, and a medical school, yet I was not getting answers or relief.
Doctors became pre-occupied with the cause of my colon and rectal issues, instead of finding a solution. They began focusing on getting me counseling despite years of healing that had already taken place. You see, the cause of my colon & rectal issues were thought to be from trauma. I was raped by 3 young men at the age of 14. I spent years healing from the trauma. I later gave birth to 2 very large baby girls, which also caused so damage to the pelvic floor. Every surgeon asked me to continue seeking therapy, because perhaps my issues were psychological. I did see a psychologist, and also underwent more tests. We found that my muscles were acting opposite of the way they should, and were in a constantly tense, causing the rectum to remain closed off. August 1st, 2016 I was told that the only hope was to have an ileostomy placed. The surgeon was surprised by my level of acceptance, until I said, “it’s ok, as I can get a j-pouch later. I am marrying an amazing man in just 5 more days, and he had a j-pouch due to ulcerative colitis”. She then explained to me that a j-pouch would not be possible due to the failure of the muscles needed to control it. I rushed home to my fiancé, Joe, and told him the bad news, and also explained to him that we could cancel or postpone the wedding. I was scared. I was in pain. I was worried about starting a marriage and blending our families with such a bleak diagnoses. I didn’t want to burden Joe. As a nurse, I knew the stigmas that come with having an ostomy.
Joe and I were married on August 6th, 2016 as planned. We celebrated with our closest friends and family, and of course, our children: Jasmin, Maya, Joseph & Lorelei. We were now one big, happy, blended family. Our family is absolutely amazing! Jasmin is 19 and in college. Maya will be 14 yrs old in August, Joseph is 13, and Lorelei is 12. They make us proud every day. Joe works in Non-profit and also co-owns his own business, 12th End Sports Network. I am currently unemployed due to many years of being disabled, but I am a Licensed Practical Nurse.
I continued to seek other options other than ileostomy surgery following the wedding. I had surgery to correct the rectocele, enterocele, intussusceptions, and other issues. The surgeon performed a rectoplexy for the rectal prolapsed and a bowel resection, removing my sigmoid colon. Follow the surgery my symptoms increased, and rectal spasms had me in tears daily due to pain. I travelled to Ohio to visit the Cleveland Clinic on multiple occasions where more testing and treatments were done to no avail. December 2017 I had surgery to place a loop ileostomy. I felt so much relief after. No more vomiting. No more syncope. The rectal spasms however, continued.
Within a few weeks we found that I had developed a new issue. I was allergic to the adhesive of the ostomy bag. We switched bags and supplies, but the rash and wounds only became worse. The fistula under my stoma burned in searing pain. The skin around the stoma became so swollen it appeared that I had a hernia, but I did not. I had extreme cellulitis. The doctors here in Rochester gave me no hope that anything would improve. It was something I would have to live with. I did my own research and reached out to Dr. Rehnke’s office. I wanted BCIR. My ostomy bags were falling off daily due to weeping skin. My bag had even fallen off in public in front of rooms full of people. I developed social anxiety.
Every step to get BCIR surgery was met with new challenges. Joe’s job position was cut, and he became unemployed February 2018. I had to get on Medicaid. Insurance did not want to cover the surgery. We had no extra money for travel, such as plane tickets to get to Florida, the hotel stays, the supplies needed while in Florida, and any additional costs. We were met with blessing on top of blessing. After fighting and advocating for myself the insurance company finally agreed that the surgery was necessary. This took months. I cried daily and fought harder, and finally my appeals were approved. Joe set-up a fundraiser for the additional expenses we faced. Many friend and family donated. There was a huge outpouring from our Curling Community across the nation. Soon we had enough funding to get to Florida, and we would face any other unforeseen circumstances later. We were showered with love and the blessing of amazing, giving individuals.
Joe’s unemployment, though we were suffering financially, was a blessing only for the reason that that he was able to remain by my side almost the entire time I was in Palms of Pasadena Hospital. He was a huge support, taking me for walks to see the dolphins, comforting me, and caring for me. He even shaved my legs for me. He had to leave to go home a week prior to me, because he had a job interview. My mom flew down to Florida to care for me in his absence and to accompany me home to NY.
We were extremely blessed because while we were in the hospital, Joe’s parents cared for our children. After caring for them for a week in our home in NY, they flew them down to their own home in Bonita Springs, Florida. The kids had a fun vacation with Grandma & Grandpa Calabrese, and were even able to visit me at the hospital. Despite a battle to get the BCIR surgery, everything fell in to place to make it happen. So many people sacrificed for me, and I am extremely grateful. I could not wait to be able to give back, and advocate for others who may benefit from BCIR.
Joe and I are curlers (Yes! That sport with rocks, ice, brooms, and shouting), and in April 2018, Joe and I ran our first fundraising bonspiel (curling tournament) at Rochester Curling Club. It is a fun bonspiel, with twists to the rules. Participants were able to bid on cards that either gave them a “one up” on the opposite team by hindering the other team, or benefiting them, such as extra points in a end, or making the opposing team throw their stones wearing a blindfold. Knowing that Quality Life Association was such a huge supporter of BCIR, and that they provided the initial supplies I needed, and education for so many, they were on the top of our list as a non-profit we wished to support. We ran the bonspiel April 2019 in support of a local women’s shelter (Sojourner Home: The House of Strength) and Quality Life Association. I told my story to all of the participants the last evening of the weekend bonspiel, and tears were shed, and many people reached in to their pockets to donate a bit more. They had no clue that an organization like QLA existed, or that the procedure of BCIR was even a possibility.
Throughout my journey I have been updating my story on my blog and website: Elisa Energized. I am not ashamed of my story or my journey. I openly tell it and advocate for BCIR. I am looking for ways to reach out to the local medical school to advocate and educate further. I hope to get the local hospital to do Grand Rounds on ostomies and allow me to speak regarding BCIR. If they are not ready to listen, I plan to reach out a little further to other hospitals in neighboring cities such as Buffalo and Syracuse. As a LPN I know it is my job to advocate. If I had the finances I would go back to school to become Official Patient Advocate and make it my primary focus. I am grateful for my BCIR, and I am grateful for QLA.