My Life as a Crohn’s Patient
a blog by CiCi
My name is CiCi, I am a 24 year old single mother. I work for the Health Department, go to school part time in the evenings, perform in live theatre around Austin, TX and I have Crohn’s Disease.
The Past
I was diagnosed at a relatively young age. Most people don’t get diagnosed until in their mid to late twenties. After months of blood work, humiliating tests and exams, at 13 years old I was told I have an incurable disease. After years of stomach issues, pain, and discomfort, it was nice to know that there was a name for what was wrong and not just lactose intolerance or a pre-teen attempt to get out of class regularly.
I was immediately put on high doses of steroids to suppress my immune system, along with other medications. I went through several different medications before my doctors and I finally found a winning recipe of medication to finally get me into a brief remission and stop the pain, internal bleeding, ulcerations, and malnutrition. By the third or fourth month into my diagnosis I was taking roughly 25 pills a day. Due to the harmful effects some of the drugs can half on the liver, I was constantly being taken out of school for lab work. It was to the point that I knew all the lab techs in the blood lab on a first name basis; we joked that I should just have a tap put in to save them time.
I quickly grew to hate going out in public, hated school, and became depressed. The most recognizable side effect of the steroid I was taking is what is referred to as “Moon Face.” I looked pudgy and swollen all the time and hated it. The most embarrassing aspect of Crohn’s Disease is the inability to control bowl movements. That’s not to say you defecate on yourself, but that the minute you get the urge to go, you’ve got exactly 2.5 seconds to find a restroom. Trying to deal with the humiliation of being a 13 year old girl in middle school was bad enough, but adding the constant restroom trips, looks from peers, and constant sick days from school, emergency surgery, and a few other medical diagnoses made my eight grade year the worst year I can remember.
Eventually I was weaned off the steroids around my sophomore year in high school. Through out high school, I was constantly in and out of remission. My junior year, my doctor told my mother and me about a new drug that had just been approved for use in Crohn’s Patients called Remicade. It’s basically chemotherapy but less harmful to your body. Its goal is to suppress the immune system to allow the digestive system to heal from ulcerations, inflammation, and allow for healthy absorption of nutrients. My mother and I agreed to try the medication and I was scheduled for my first infusion about a week later.
I had to get tested for Tuberculosis because this medication could cause full blown TB if I had ever been exposed to it. The day for my infusion arrived, my mother picked me up from school and we headed to the hospital infusion lab. Because I was still a minor at the time, I had to go to the pediatric infusion labs at Brackenridge Children’s Hospital. I will never forget this day as long as I live, this was the day that changed my entire attitude towards my disease.
As I was entering the lab, a girl about my age walked out. She was wearing a beanie, looked deathly pale, and it was very obvious she had no hair due to her chemotherapy. I saw her look at my long hair with jealousy and I immediately felt like the worst person in the world. In that very moment I realized for ever how lucky I am. I have the luxury of knowing that while my disease may not be curable, it’s not going to kill me. This girl didn’t know that. She didn’t know if her treatments would save her life. In that moment I cast away all pity parties I’d held for myself, and realized I don’t need sympathy, empathy, or any sad eyed looks.
I had my infusions, was susceptible to any infection or virus because I was with out an immune system, but my Crohn’s finally went into remission. I was finally able to go out with out worry about where the nearest restroom was. I finally didn’t have to worry about the humiliation if I were to have an accident in public or at home. I could eat what I wanted and not worry about the pain, swelling, and nausea any more.
My senior year was the first year I could remember being healthy.
The Present
Three years ago I had my beautiful daughter and she is the joy of my life. During my pregnancy, my Crohn’s severely came out of remission. I started bleeding, loosing weight, and had the frequent diarrhea again. During my fifth or sixth month into my pregnancy I weighed 117 lbs, due to my malnutrition caused by the newest bought with Crohn’s. There are theories that the Crohn’s is what caused my daughter’s premature birth as well. She came into the world tiny, but relatively healthy. The medications I was on at the time were acceptable to be on during pregnancy but I had to switch medications after my daughter’s birth if I wanted to breast feed. So onto another search for the perfect medical cocktail.
I had to undergo yet another colonoscopy around my daughter’s 8thmonth and it was determined that I needed Remicade infusions again. My Crohn’s was so severe at that point that I can remember nights at 2 am breast feeding my infant daughter while I was on the toilet. When your Crohn’s hits, there’s no waiting just five minutes, there’s no waiting two minutes…you do what you have to do. I had dropped down to 100lbs because I was no longer absorbing any thing I consumed.
Due to the volatile nature of Remicade, to ensure that I didn’t have any adverse affects, I had to start a new regime of medications for a month before I could have an infusion. I had to wean my daughter from breast milk because one of the medications, Purinethol, is extremely harmful to babies. After I had my daughter weaned I went in for my first infusion and had to follow a special protocol that consisted of high doses of IV Benadryl, IV steroids, and Ibuprofen for an hour before the Remicade could be infused. The day following my infusion, it became apparent that my body could no longer tolerate the drug as it used to. I broke out in a head to toe rash, and became photosensitive. In the ten minutes it took to drive from my office to my daughter’s daycare I developed a sunburn that one would normally only receive after a long day on the lake.
By my third infusion it was determined that I could no longer receive Remicade. With in five minutes of beginning the infusion, my body temperature plummeted to 93 degrees, and my blood pressure bottomed out…I was inches away from going into shock.
After that I decided I was just going to stop taking my medications because I was sick of all the adverse side effects. My liver is shot from all the intensive steroids.
About a year and a half ago, I was hospitalized because my intestines just stopped functioning. In a matter of three hours I went from a concave, ballerina stomach, to looking sick months pregnant. When this amount of swelling occurs over such a short amount of time the fear is that there is a major blockage some where in the intestines. I was there for eight days, and by the end of it, I had undergone so many different tests, consumed dozens of contrast dies to highlight my intestines, gallbladder, and stomach that I could barely move. I wasn’t allowed to consume anything not even water. In a cruel twist of fate, the only channel that worked on the TV in my room was the food network. While in the hospital, my potassium level (potassium is necessary for the heart to beat) bottomed out to almost 0. I was immediately put on heart monitors, oxygen, and give back to back infusions of pure potassium. Before the potassium had take affect in my body, all my muscles began to cramp and seize. I couldn’t move my hands any more, and my heart rate was 42 beats per minute.
They were never able to determine why my intestines stopped functioning, and after they got my potassium to healthy levels again I was released. They concluded that my intestines just needed a break from almost ten years of non-stop, watery diarrhea. I was put on a medication called Reglan. This medication seemed to help, until it was discovered that it caused Tachycardia-Arrhythmias in my heart. All the warnings on the medication state that the arrhythmia should stop after the drug is out of your system but a year later I still have heart problems.
Due to this, I cannot try some of the other medications out there for Crohn’s because they have the same “rare but severe side effect” that the Reglan had on me.
Certain people develop what I call, “Crohn’s Sores.” It’s when the Crohn’s spreads externally. I get sores on my face, arms, and legs. They are extremely itchy, and often develop puss, and can “explode” randomly. The sores on my face have bored holes into my cheeks. The only way to really treat them is with topical steroids.
As of now, I can not consume solid foods; any time I try, my stomach immediately swells. I have so much scar tissue around the opening from my stomach to my small intestine that it cannot empty efficiently. I have ulcers in my esophagus that cause food, medication, and liquid to get “stuck.” I have not been able to consume meat, bread, starchy food, or anything with fiber residue (beans, peas, corn, nuts) for about a year now. My diet consists of egg drop soup, tofu, matzo, and the occasional salad.
I don’t eat breakfast or lunch because I’d rather not deal with the pain and swelling while I’m at work. I am generally woken up around 3 am every morning to begin my frequent restroom trips for the day. I usually get severely ill in the mornings at least once a week, and will be curled in the fetal position from the pain and vomit stomach bile. I generally go to the bathroom 10-12 times a day. I’ve gotten over the embarrassment of “pooing” in a public place. I’ve had almost 11 years to grow accustom to it. I constantly have to check my BM’s for blood, puss, and other fun stuff. It’s humiliating to admit, but as a 24 year old adult, I’ve had accidents. It’s not anything a Crohn’s patient like to talk about, but it’s the reality of our disease. They happen. You learn how to adjust your life around it.
Trying to perform live theatre when you have Crohn’s makes life interesting. I’ve had to have the humiliating discussion with my fellow cast mates about what my disease is, and that an emergency could arise while I’m on stage. I always come up with cue lines for my cast mates and we come up with lines to cover incase I have to flee off stage. “Romeo, Romeo, where for art thou Outhouse?!” I’ve had to perform the day of an infusion, been in excruciating pain back stage, but no one in the audience ever knew.
Trying to keep up with my three year old is very hard when I have a disease that is constantly depleting me of nutrients to keep me energized. I have a lot of guilt that I could do more with her, play harder with her, do more exciting things if I only had the energy. She knows about my bathroom trips, when ever I tell her I have to go potty, she’ll come and hang out with me. I have an ample supply of books, and other toys in the bathroom to amuse her. We talk about the fact that mommy goes potty and now that we’re into the potty training stage, she gives me a hug and congratulates me for using the potty like a big girl, the same way I congratulate her!
Future
I know how very lucky I am. I have medical insurance to help with the costs of my disease. A single Remicade infusion before insurance is $4,000. I have a loving family to help and support me. I have wonderful friends who I can joke about my bathroom habits with, and they don’t find me disgusting or un-lady like for any of my issues. While my symptoms aren’t great, they’re bearable. There are other Crohn’s patients who are not as lucky as me. Some people require blood transfusion because they’ve lost so much blood from internal bleeding in their intestines. Some patients require surgery to remove parts of if not all of their intestines. Those who have had their entire large intestine removed require a Colostomy Bag. I’ve been blessed and lucky enough to not need any of that so far.
There is no cure for this disease and thousands of people like me live in pain every day. Though people are diagnosed with Crohn’s every day, it’s not a commonly known disease. No body wants to talk about bowel movements, gas, and bloating. Girls just “don’t do that” do we?
While I’m used to the effects of this some times debilitating disease, I don’t want my daughter to develop Crohn’s and endure the things I have. I want other children to have a cure; I want anyone with Crohn’s to know that they don’t have to live a life of humiliation, pain, and exhaustion. I don’t want a cure for me; I want a cure for Everyone.
