Back From The Edge
The greatest gift any parent can receive in life is a healthy child. That is what my husband and I received one beautiful, warm, July Florida evening. Our daughter was born a healthy 8 lbs. 8 ounces and measuring 21 inches long. Although a crier as an infant, (with no reason to cry), she was overall healthy and grew into her toddler, preschooler and grade school years with just the common colds and had her adenoids and tonsils removed by the age of five. She was an active little girl -- danced, Girl Scouts, played the tuba and drums, attended her CCD classes, played little league softball and did all the other fun things kids are supposed to do.
In June of 2010 just shy of her 10th birthday, something went unexpectedly wrong for my daughter. One day she approached her daddy and said, “I have blood in my poop.” My husband, thinking that she probably had pushed too hard, just told her, “It’s ok, you probably just pushed too hard and hurt yourself.” But that was not it. The blood kept coming back and she began to experience pain and just not feeling herself. We took her to her pediatrician right away and they began to do blood work; the results all came back normal and they could not understand what was causing the bleeding from the rectum.
One night we had to take her to the ER because of bleeding and horrible stomach pains. In the ER a stool culture was done, except there was not any stool in the cup; it was all blood. The ER attending doctor told us that it looked like she most likely had Crohn’s disease. I felt my whole world leaving me hearing those words and began to sob. I really did not know what Crohn’s was, I just knew it was not a good thing to have. They wanted to transfer my child via ambulance to Joe DiMaggio Children’s Hospital that very night, but my daughter did not want to ride in an ambulance, so we opted to call the GI Team the following day at Joe DiMaggio and make an appointment for a colonoscopy.
On July 23, 2010, we finally got an answer to all our questions. My daughter was diagnosed with ulcerative colitis. The GI doctors told us, “Well, at least it’s not Crohn’s -- out of the two, UC is the better one to have.” I just about fell to the ground. From that day forward my child’s life changed dramatically as she once knew it. Our whole world became one huge nightmare. It was like being stuck in a dark long tunnel and we could not see the light at the end of it.
Knowing the diagnosis, she was now on medication after medication, one being prednisone, a steroid which has bad and long-lasting effects. There were other countless medications and countless side effects, yet nothing ever gave her relief. I could see the disease taking a toll on her, the weight and hair loss, the constant bathroom visits. We found ourselves in hospitals more than anywhere else. It felt like an endless cycle of drugs and hospital visits that we knew we needed a break from -- we needed a moment of relief and a moment to get healthy again. My daughter was so underweight and so malnourished. She was about to enter puberty and if we did not take the step that we did, she would not physically develop as a young girl should.
The Ileostomy. At the age of 13 my daughter had her first ileostomy, at that moment in her life it is what she needed to be able to go through puberty. She herself told me that the ileostomy pouch has been her biggest savior, which at that time she did not yet know. For 4 years she had an ileostomy. It was obvious she hated it and it was a hassle to deal with, but she had her life back. We had a Quinceañera for her 15th birthday, we took her to Paris, and she was able to go to school undisturbed. But with that moment of relief came the mental hardships. Having an ileostomy was a huge life adjustment for such a young person. At the age of 17, she was relieved when the reversal finally arrived and all seemed to be back to normal; for a while she was ok. She was recovering from surgery fine until everything went downhill. In August 2017 she went septic. I remember the ICU doctor telling me, “She is lucky you got her here on time.” I almost hit the floor, my heart seemed to skip a beat and I felt faintish. My daughter has stated that that was such a standout time in her life. I can see why; it was such a turning point for a lot that was going to happen next.
When she recovered from the septic shock, her life was somewhat normal. She strangely was only going to the bathroom once a day or every few days. We never concluded why. Ulcerative colitis causes many bathroom visits, and she was not going much. But when she did have to go it was horrible. She would spend so long in the bathroom, groaning in pain. It killed me to know that was going on. Eventually my daughter’s GI doctor had her get some tests done, including a CT scan. An abscess in her pelvis that was the size of a tennis ball had been building in her for maybe two years. It was December 2019 when we found this out. She spent the next few months fighting the infections from the abscess only for another one to form, a second abscess within only a few months. For some time, the COVID-19 pandemic was the least of her worries. She had been cut into, poked, pricked, for a decade now. As she was getting better from the second abscess, she felt a fever start to hit. “No more, I’m done,” she said. Her colon was not going to get better, and this cycle had to end. We went to Cleveland Clinic in Florida and discussed getting a colectomy. My daughter had always been told she would one day need a full colectomy, but we were not ready to do that yet, my daughter especially. It is considered major surgery and she was still a child. But now she is a young woman, and the choice to have this surgery was the most courageous thing she has done so far. I do not know how she faced this horrible illness all these years, she is truly my hero. In August of 2020 she lost her rectum and her colon. She now has an ileostomy for the rest of her life. UC finally beat us, but the disease is gone from her body and she has her life back, she is in college and is clocking 35K steps daily. We are extremely thankful and forever grateful to the amazing surgeon Steven Wexner, MD, at Cleveland Clinic, Florida, for giving my daughter her life back.
While her body has healed physically, her mental health is in another place. It is a work in progress. There are still years of trauma to work through and, although my daughter’s battle is over, I still have HOPE that in her lifetime she will see a cure for Crohn’s and ulcerative colitis for so many people (even in young children) who suffer from IBD (inflammatory bowel disease). I am grateful for organizations such as Propel a Cure for the fight against IBD and pray that they will be a pioneer in finding this cure.