By Christine Morris, as told to Susan Bernstein
I was 16 when I was diagnosed with Crohn’s disease. It was 2004. I was just a very sick
kid. Even as a baby, my mom told me that I had to be on soy formula because I was lactose intolerant. When I was older, doctors told my parents I had cyclic vomiting syndrome. This was a permanent thing where my diaphragm was hyperactive. If I throw up more than once, I can’t stop. I would just go on and on until there was nothing in my stomach anymore. I had to get fluids at the emergency room. I learned as an adult that I can get ahead of this as it starts. I take a drug called Zofran. It makes me drowsy, but the good thing is that it dissolves under the tongue, so you don’t vomit it back up.
Alien in My Stomach
It all started with those warning signs. Doctors said, “Well, maybe she is just more susceptible to catching stomach bugs.” At 13 or 14, I suddenly took a turn for the worse. I developed an intestinal blockage. Crohn’s had been doing damage to my small intestine for years. I missed almost a whole year of classes during my sophomore year of high school. I had vomiting episodes and severe abdominal pain.
We joked sometimes that I had an alien in my stomach, because it would rise and fall so heavily. I wore sweaters and sweatshirts to muffle the noise it would make. Through this whole process, I saw multiple doctors and had multiple tests, including colonoscopies and endoscopies that didn’t find anything. It was terrible.
Doctors would say to me, “Well, maybe it is psychological.” At that age as a girl, they were always thinking that my symptoms might be caused by an eating disorder. This condition can stunt your growth, too. I lost so much weight. I was unable to absorb any food or nutrients. I wasn’t developing at the normal rate a teenage girl should. I looked 12 at age 15.
At 15, we finally decided to try to see a pediatric gastroenterologist in Atlanta. I grew up in Rome, GA. Unfortunately, I didn’t have access to high-quality care there. With a more severe disease, we wanted to be seen by a specialist at a research hub. We drove an hour into Atlanta to see a specialist at Children’s Healthcare of Atlanta at Scottish Rite. He was one of the greatest doctors I ever had and he knew Crohn’s so well. He looked at my hands and said, “Have you ever noticed that your fingernails are shaped like the back of a spoon?” He called this clubbing.
Surgery, and an Answer at Last
Eventually, the only way to definitely learn what was going on was to do exploratory surgery. In August 2004, they found exactly where my Crohn’s damage was located. It was just above the ileum, so too far in to be seen on a colonoscopy and too far down to be picked up by an endoscopy. Apparently, this had been developing for so long that inflammation had destroyed a whole section of my small intestine.
I was relieved to get a diagnosis. The big thing you want when you go through all of this is to have an answer for your symptoms and a plan. When I woke up after the surgery, they said, “You definitely have Crohn’s disease. It’s a permanent, chronic illness.” They did a resection of my intestine while I was in surgery, and they thought that hopefully, my disease would stay in remission with medications. It did for 6 years. Then, it came back with a vengeance in 2010. I had flaring, active disease again in my large intestine.
Play the Cards You’re Dealt
Crohn’s can appear anywhere in your digestive tract from your mouth to your large intestine. Colitis is only in your colon. The unfortunate thing about Crohn’s is that no amount of resecting can cover it. It was at that point when I realized the unfortunate cards I had been dealt. I realized that it would always be difficult for me to keep my Crohn’s under control.
Between 2004 and 2014, I was on seven different medications. At first, I only had to take an anti-inflammatory and an immunomodulator [drugs that treat the immune system to control Crohn’s flares]. That worked for 6 years. When I flared again, they put me on high doses of prednisone, a steroid: short bursts, but often. Then, I switched to biologics when nothing else would work. They worked longer, and initially, they were more effective. I have taken literally everything.
Reach Out for Help
What did I wish I knew when I was younger? I definitely wish I had known there were resources available to help us understand Crohn’s and what I was going through. Obviously, the Crohn’s & Colitis Foundation of America (CCFA) does all it can to get information out there for patients. My family and I had no idea what this disease was or where to go for help. We never knew anyone else who had Crohn’s. We found out later that a cousin on my dad’s side had Crohn’s, too, but nobody else in my family had it.
Another thing I wish I knew was that, maybe for far too long, we thought the right doctor to see for my symptoms was my pediatrician. I really needed to see a gastroenterologist, because they specifically treat the GI system. Some of these doctors specialize in inflammatory bowel disease (IBD). I wish I had known that you could see someone who was also involved in Crohn’s or IBD research. They could have told us about clinical trials of new treatments that are not available to the general public yet but could be available for you if you have Crohn’s. These are medicines that can save lives.
I wish I had known that there were other resources to help people with Crohn’s. It was a very big issue for me that I was missing so much school. My school didn’t understand why I was missing classes. My dad had to go to get doctor’s records and letters to prove that I was out of school for legitimate medical reasons.
25 Bathroom Trips a Day
By 2010, I kept trying different biologics. I was learning to do home injections. I kept telling myself, “Well, it’s better than the alternative! Better than experiencing all of my symptoms.” Eventually, those drugs weren’t working either. I was going to the hospital more and more for vomiting, pain, and incontinence. These were signs that something was amiss. I had loose, bloody stool. I was running to the bathroom 25 times a day. I could not even finish a meal without running to the bathroom.
In 2014, I made the decision to do a diverting ileostomy [surgery to steer waste to a pouch instead of the inflamed gut]. They thought that giving my colon some bowel rest would help. I did that for a year, and I didn’t get better. My disease was severe. So, in 2015, I had permanent ileostomy surgery. They removed my large intestine and what’s called “the stump,” which is basically the anus. I don’t have a large bowel anymore. All stool comes through my small intestine to an ileostomy bag.
Thankfully, I worked for 9 years at CCFA. They were very understanding about patients working for them and had good insurance. I had to take short-term disability and max out my FMLA [Family Medical and Leave Act] leave. They were able to work with me, and I was able to keep my job. Recently, I was laid off due to the pandemic, and I now work at Habitat for Humanity.
Don’t Overlook Your Mental Health
On the first day of my current job, I had so much scar tissue built up that I had a severe vomiting episode. On my first day! I had to have surgery to remove scar tissue. Thankfully, with this job, I was open and honest with my boss about my Crohn’s disease. She was able to give me leave time in advance so I could get better. I love my job.
If I could give advice to someone who is first diagnosed with Crohn’s, it would be this: Have a support system, whether that’s your parents, a friend, or someone else. You will need people who can drive you to the hospital or for tests.
Crohn’s can be mentally taxing as much as physically taxing. Don’t underestimate your mental health needs. Get help or medication if you need it. I learned this the hard way. When I had surgery, they prescribed pain medication, which you need at first. But these drugs can cause depression, too. You don’t feel the physical pain for a while, but when you come off those drugs, you can feel so low. Trying to avoid that situation whenever possible helped me. I also take an antidepressant. Talk about all of your options with your doctor. Over-the-counter probiotic supplements also helped me, and I wish I had known this earlier.
One thing I’ve learned is that you must look at the whole body when you’re treated for an autoimmune condition like Crohn’s. My condition is more systemic. I have become very interested in the connection between the brain and the gut. They’re clearly connected.
Stress can affect your gut health. My Crohn’s flares happened to me during stressful times in my life, such as when I was graduating from high school and college and planning my wedding. Don’t overlook your mental health.