Where It All Started
There are moments in one’s life that are indelible, never fading from memory. I remember when John F. Kennedy was shot. I was 8 years old. I remember when both Martin Luther King and Bobby Kennedy were shot too. I was 11 years old. I also remember when we landed on the moon, the Vietnam war and protests against it, hippies, drugs and going into San Francisco to get ice cream at Ghirardelli Square.
Of course, I remember when I got married and when I had my babies. Undeniably indelible! Those memories and when my son first mentioned his symptoms will never lose their power.
Tigger had just graduated from college. It was in the morning after driving back from LA with all of his belongings stuffed into our van. He mentioned to me, almost in passing, “mom, my tongue has been feeling funny, like it’s swollen.” I didn’t quite know what to do with that information, it indeed sounded bizarre, but I thought perhaps it was an allergy to something he had eaten. I didn’t think much of it, and time would solve it. Then a couple of days later he told me his mouth was burning. He was also starting to get night sweats. I knew then that something far more sinister than a simple allergy was happening and it was time to go see the doctor.
We first went to the GP who sent us to the Ears, Nose and Throat specialist, a young, confident, friendly doctor who diagnosed ‘Burning Mouth Syndrome’, a condition that afflicts post-menopausal women. We were given a prescription for Magic Mouthwash which was to relieve the pain and sent on our way. A week or so later, Tigger began to get mouth ulcers. First one, then several, then multiple ones, everywhere in his mouth, sores on top of sores, going down his esophagus and on his uvula. This went on for months and his night sweats drenched his sheets forcing him to get up and change them nightly.
I started to read everything I could find on the Internet to try to figure out what was wrong. We knew the first diagnosis was incorrect. He clearly did not have Burning Mouth Syndrome. He was in constant pain and could barely eat. He was studying for his MCATS, wanting to attend medical school so we thought naively perhaps it was simply stress. But I bought all sorts of supplements, and weird “natural” toothpaste, bought gluten free pasta, and gave him various oils I had read about which supposedly would relieve the sores in his mouth. Nothing worked.
Armed with a list of possible ailments, Tigger went back to the GP. One of them on the list was Crohn’s disease, but never truly believing that it could be the cause as nobody in our family had ever had it. His GP sent him to Gastroenterology where they said he needed to have a colonoscopy to rule it out. We were planning a trip to France and decided it was best to wait until after we returned. Meanwhile his mouth continued to burn, mouth ulcers continued to erupt, and he took his MCAT’s through it all.
During that month in France, staying in his paternal grandfather’s house with all of the familiar smells, sounds, and foods he miraculously went into remission, or so we thought, and his mouth no longer burned, and his mouth ulcers abated. To us, it meant that all his issues must have been stress related. Little did we know though that his intestines were still inflamed, and a fistula was forming.
Upon returning, even though I didn’t think it was necessary because after all, he was doing well, his doctors insisted that he have the colonoscopy, which led to another indelible day forged in my memory. His father brought him to the hospital, and I planned to join him after my session at the gym. We were so very optimistic! Our boy was healthy and there was no reason to think anything would change. All of those sores and burning mouth were simply a blip, a funny, weird thing that happens but then subsides never to experience again.
I got lost finding my way to the hospital and missed seeing the doctor right after the procedure, but I will never forget my husband’s look across the room from where I entered. When I saw his expression, his face drawn, my heart sank, I felt like something was stuck in my throat, my head pounded. Enveloped in the grey, dark room he looked at me when I arrived at the bed where Tigger was still asleep and he said, “it’s Crohn’s.” I remember thinking, “no, no there must be some mistake. He doesn’t have that. It can’t be…” But it was, and soon after being discharged things got worse…much worse. The burning mouth returned, the sores returned, the stools became loose, the pain from the fistula seared his insides. Our grown little boy was sick and melting away before our eyes.
We waited for the doctor to get back to us. I expected a call right away, treatment to be given and he would quickly improve. Instead, we waited and waited until I finally called the CEO of the hospital to complain. That night we got a call back from the doctor and I thought at last, Tigger will get the meds necessary and he will get better.
Little did I know that there was no easy treatment and no cure…