My Experience

Crohns Awareness Pic IT’S BEEN 13 YEARS NOW  

Since it started around age 7/8, I started experiencing immense amounts of pain in my stomach. I had no appetite, I was constantly going to the bathroom. This tiny 7-year-old girl spent countless hours in and out of bed with her newly found best friend the bathroom. I was throwing up uncontrollably, I would spend 30-minute sittings going through even different types of consistencies of my bowel movements. Being up all night left me fatigued all day at school where I had trouble focusing sometimes and never knew why until I got older and started putting all the pieces together. I remember I would have to go to the bathroom a lot during school and I would get made fun of when the other girls could hear me in the bathroom. Looking back now I was in a pretty crummy area and the students weren’t nice so that didn’t help. I started to notice a pattern that it would happen around after school, right before bed, right in the morning when I woke up…ALL THE TIME ACTUALLY I remember getting carsick in the back of the car on my way to my younger sisters doctors appointment. PIZZA EVERYWHERE!

At first, my parents thought I was faking sick as many children do to get out of things but after a few months of a consistent pattern my dad took me to a walk-in clinic where they told me I had the stomach flu. After I took the medication they prescribed me with no improvement I went to my family doctor.

They started running some tests. They checked to see if I was Lactose Intolerant & if I had Celiac Disease, I remember countless trips to the emergency room because of excessive throwing up & Diarrhea for days on end that just wasn’t stopping. I found out that I had a Gluten Intolerance and I was Anemic. I tried taking 3 different types of oral supplements, after adding it into my diet as well and nothing seemed to work. ( in the later years I did blood transfusions! ) Around ages 10 / 11 I started playing around with my diet. I would cut out certain food groups completely for a month and then slowly reintroduce them and monitor my symptoms as they appeared. This revealed my gluten intolerance meaning I can only have a certain amount each day. Bread being the heaviest form I can have about 5/6 slices a day. Heavier doughs have more gluten so I can only have 1/2 slices. This also revealed that I had Irritable Bowel Syndrome. At least that’s what the doctors were telling me. I kept going through this program until I was about 15/16 around the time I ended up getting a written diagnosis (which I needed because my job at that point in time was forcing me to work oversights which weren’t good for my system at all.) They helped me figure out some quick simple meals that would be easy to prep and store for my on the go busy life style as I was in Highschool as well as doing a bunch of other things. ( Apprenticing, Working, Volunteering) This program also helped monitor my weight. Through this program, I had also been seeing a therapist for a little while where she diagnosed me with anxiety ( later on I was diagnosed with approx. 4 different types of anxiety from another doctor.) It helped me start realizing the mental impact it had on me. (Mental health is also a HUGE component to Crohn’s Disease) At age 17 things started getting severely worse and I could tell that I did not have just plain old IBS like the doctors were insisting. I had started puking almost every day all day even worse than when I was a Child. Every time I went to the bathroom I literally had to rush there. EMBARASSING!  My bowel movements weren’t at all normal, they were excruciatingly painful and I don’t think you guys want me going to in-depth about the consistency right now. I went back to the doctor and insisted something more was wrong there had to be. I couldn’t even eat the soup that used to help my tummy anymore. Again they started off by doing some blood work and put in a referral to a Gastroenterologist (a specialist for Digestive Diseases.) The blood test showed that my iron had dropped significantly lower than even before. I could feel my bones starting to weaken and they hurt all the time. When I was 17 I weighed 189 pounds (way overweight in my opinion). By the time I had my first Endoscopy / Colonoscopy I had lost about 35, by now I dropped 84 pounds and I hover around 105-pound mark. My Endoscopy and Colonoscopy Experience was truly something I never expected. The preparation was actually not as bad as I was expecting though! This procedure revealed some signs of Crohn’s where my small intestine and large intestine meet. They sent in some of the scar tissue they had found to screen for cancer and thankfully that was negative. They proceeded with a CT Scan of my stomach and small intestine. At last, this revealed that I had Ileal Crohns Disease. They started me on an anti-inflammatory. The episodes were so intense I landed in the hospital 5 times in a span of 2 weeks. I was taking 9+ pills a day. My doctor then decided to switch me onto a steroid and transition onto an immunosuppressant. Currently, I am Living with no form of medication intake because the immunosuppressant eventually stopped working.

SO WHAT AM I DOING NOW?

My Specialist just came back from Maternity leave. We booked a Lactose Test, and the results to that came back negative! So we went forth and booked another Endo/ Colo Exam coming up on June 10th and hopefully see what’s been going on! I am also currently on a waiting list for a Video Capsule Enterography Procedure. I’ll have to go in for sedation, swallow a pill with a camera inside and this will transmit photos as it’s being digested. Currently, the symptoms I have been noticing at any given time are Belly pain, Cramping, Bloating, Diarrhea, Loss of Appetite, Anemia, Fatigue, Skin Nodules, I am always freezing cold due to my Anemia, I experience a lot of Joint & Muscle Pain. My body has an extremely hard time absorbing the nutrients from anything I eat, I have noticed an increase in my headaches and light-headedness and I often feel weak. I’m Taking it day by day and trying to keep healthy happy and positive!