My son’s Crohns story began in May 2010. Upon returning from his 8th grade graduation trip to Washington D.C., Alex, then age 14, came home very ill and experienced high fever, headaches and non-bloody diarrhea. Twenty-four hours later, Alex was in an emergency room having blood work and a spinal tap done. Although his spinal tap was clear, we were advised to follow-up with his pediatrician because of elevated liver enzymes. Three days later, we did indeed return to the pediatrician’s office. His pediatrician was sure that Alex had come into contact with a virus while on his trip to Washington and wanted us to ride the virus out. I concurred as a mother and a nurse.
A week later, Alex remained very ill. His fever could not be controlled with Motrin or Tylenol. I remember vividly having to change his bed linens from his nightly perspiration each morning before leaving for work and dosing him up with over-the-counter meds. The sheets were saturated from his sweat! He became so short of breath and tachycardic (elevated heart rate) that he was unable to walk up a flight of steps at our home. We made a second trip to the emergency room where they found him weak and dehydrated. After IV fluids and more labs, Alex was sent home to follow-up with his pediatrician.
Ten days from his initial illness, we returned to his pediatrician. He was no better. His fever had remained 102-105 degrees. It was then that the pediatrician decided to consult with an infectious disease specialist. After an intense and thorough interview /exam by the infectious disease specialist, Alex and I were informed of the “possible” causes of his illness. The physician was very concerned about his health and in an effort to rule things out – Salmonella, chest tumor, Epstein Barr Virus, Mononucleosis, and Cancer- Alex was ordered a chest x-ray, additional labs and provided a stool specimen before he was sent back home.
On our arrival home, I immediately received a phone call from the infectious disease specialist who informed us that the x-ray was clear of tumors but that Alex’s stool specimen contained blood and was almost certain that his illness was the result of Salmonella, but wouldn’t be for sure until a stool culture result returned. There really wasn’t anything that could be done at this point so we decided to ride the storm until a final diagnosis could be made. As a nurse, I concurred.
Three weeks into Alex’s illness he awoke for the first time without a fever! Miraculously his energy level returned and he was back to normal. In the following days the infectious disease specialist called to check on Alex. His stool culture returned completely normal and his illness was diagnosed as a rare unknown virus. Alex was back among the living!
Several months later, in October 2010 to be exact, Alex called me into the bathroom. He wanted to show me blood that he just wiped while on the toilet. As a nurse I was very familiar with rectal bleeding and this in no shape or quantity was the blood I was familiar with as being problematic. I questioned him if he had any external hemorrhoids. As a teenager, he certainly was too prideful to have me look! So, I just chalked it up to a hemorrhoid and told him to let me check his stool the next time he went to the bathroom.
A couple of days later, Alex again complained of wiping blood while on the toilet. These were only small spots of blood on the toilet paper and no apparent signs of bloody stool or apparent blood in the toilet water. However, I scheduled an office visit with his pediatrician who decided since he had had problems with blood in his stool back in May/June that she would send him to a GI specialist.
An appointment was scheduled to see the GI for Kids nurse practioner (NP) the following week. I had a previous work appointment that day and asked that my husband take Alex to the GI office for a “check-up”. I remember telling him that it wasn’t a big deal and that he should take his golf clubs and they could have a golf outing after their appointment. But that was just wishful thinking! Alex was seen by the NP who immediately called Dr. Al-Tawil into the room. Dir Al-Tawil immediately recognized Alex as having the “look” of someone with Crohns. He tried to explain what was going on with Alex to my husband and told him that Alex needed to be admitted to the hospital immediately. Back at my work, my cell phone was ringing off the hook! I dare not interrupt my meeting to answer my husband’s call. He was just going to tell me that he and Alex were on the golf course anyway.
After my meeting was adjourned my phone “buzzed” and this time I answered it. My husband was screaming on the other end of the phone and was telling me that they were admitting Alex to the hospital with a diagnosis of probable Crohns. I was shocked! Crohns was never mentioned by any of the physicians we had encountered since May. How could this be Crohns? Alex never had any bloody diarrhea! No abdominal pain! There was no way my son had Crohns! The physician had to be wrong!
I immediately joined Alex and my husband at the hospital and was later greeted by Dr. Al-Tawil. He informed me of the necessary bowel prep that Alex would have to undergo that night in order to have the colonoscopy and EGD that next morning. Indeed that next morning we walked alongside Alex’s stretcher as they rolled him into the surgery area. Shortly later, Dr. Al-Tawil appeared in the recovery waiting room. I remember looking down at his hands and noticed a lot of paperwork. I knew then that something was wrong as my husband and I walked with him to a private conference area.
Dr. Al-Tawil showed my husband and I photos of Alex’s scope and informed us that Alex had “severe” Crohns. I remember asking “How can Alex have severe Crohns when he has only had spots of blood, no bloody diarrhea and no abdominal pain?”. “If this is severe why was it just found now?”The answer I received rocked my world. “They were looking for an infectious disease not an inflammatory disease” stated Dr. Al-Tawil. In all my years of nursing I never separated these two entities. There was no doubt about it Alex’s colon was severely inflamed. Alex would spend the next 9 days in the hospital with a PIC line for IV nutrition while his gut rested with no food, gum, water or ice chips. On the final day of his hospitalization, Alex began an IV infusion of Remicade. As a nurse I was unaware of this medication but I was at peace with the decision to start the infusion after speaking to a former patient of Dr. Al-Tawil who himself was a Remicade patient. This now adult patient credited Dr. Al-Tawil with saving his life and in turn I must admit that he has done so with my son as well.
The beautiful thing about this KidsFACT website is that you are never alone. Many of our board members have shared their child’s story with you much like I have shared Alex’s story. We each have different stories to tell about our experience with our child’s diagnosis of Crohns or colitis. Please feel free to call upon any of us if we can help you or your child in any way.
Kids Fighting Against Crohn’s and colitis Together