To start, I want to go back a little bit and explain a little further into my illnesses/diseases. Even just looking or hearing the word “disease” is scary. It makes me feel dirty and unworthy. Anyways, growing up it was always mostly my Dad, my brother, and me. We would almost always eat dinner at home together, unless Josh or I would be at a friend’s house. Around the age of 16 I began to notice something was not right. Nearly every time I would eat, I would get a severe stomach ache and I would have to run to the bathroom because I would get sick. Pretty soon my weight started to drop. Because of my symptoms and continued weight loss, my dad took me to the hospital. I would go to the hospital a couple times before they told my dad they believed I was suffering from an eating disorder. Now anybody that knows me knows that I am a daddy’s girl, so he clearly knew that this was not what was going on.
I went on a vacation with 2 of my best friends at the time, Jack and Nikkie. We went to Florida and stayed with Nikkie’s family; I believe we were going to stay for a week. After a couple days I ended up getting severely sick again. My mother bought me a plane ticket to Virginia, which is where she lives. When I arrived there, I was down to about 76 pounds. My mom scheduled me an appointment to see a Gastroenterologist, Dr. Kobak. After the appointment with Dr. Kobak I was scheduled to have a colonoscopy. Now remember I am 16 and I have never heard of a colonoscopy, and little did I know that they would become a frequent part of my life.
I’m not sure how many of you reading this have had a colonoscopy before, but the prep for one is the worst thing that has ever been invented. To prep you have to mix 64 ounces of clear liquid with 8.3 ounces of miralax. The day before your scheduled colonoscopy, you have to take two Dulcolax and drink one 8 oz glass of the miralax/Gatorade mixture every 15 minutes until it is gone. The miralax makes the Gatorade taste and feel like what I would imagine oil being ingested would feel like. I am also one of the world’s worst drinkers and am in pretty much a state of dehydration all the time so drinking this much of anything would be difficult for me. After I get about 2 glasses in, my stomach starts to cramp up and I need to run to the bathroom. What in sweet baby Jesus is happening to me right now?! Like seriously what is this force inside me? Nobody explained to me that I would be trying to empty every single thing inside of my body out. This goes on for a couple hours, and finally I get to the point where I can not drink another sip because it is now making me vomit. Shouldn’t I be at a party and vomiting because I drank too much with the rest of my friends?
After spending many hours in the bathroom, and having your legs go numb from sitting so long, I can finally go to bed. The next morning my mom took me to the children’s hospital in Norfolk for my procedure. This is where getting a colonoscopy gets to be ok… the part where you get anesthesia and have the best nap of your life! This would be my first time under anesthesia. I remember the nurse telling me to start to count backwards from 10. That is as far as I got… 10. The room went dark and the voices got deeper until BAM, I was out! Next thing I know I am waking up and it is all over. The doctor came to talk to my mom and results were that my intestines were almost shut because I had been inflamed for so long! No shit Sherlock. Thanks to a certain hospital I almost died. If I wouldn’t have gone to the doctor’s in Virginia, I may have died 3 weeks later.
The doctor decided to put me on high dose of steroids… Prednisone. My worst enemy! Prednisone makes you feel like you are crazy. You sweat like it’s going out of style and you get mean. I believe they call this “roid rage”. I developed a “moon face” from the prednisone. I remember coming home and seeing people at the grocery store from school, and they didn’t even recognize me because my face was so swollen. I hated this. I had just gotten more serious with my boyfriend and I thought he would break up with me once he looked at me. Looking back now it makes me laugh that I even thought these ways, but when you are 16 that’s all you care about. I just wanted to be normal again. Little did I know at that point that normal was never going to happen. I was placed on high dose steroids and I was taking 21 pills a day. This is what I had to do to save my own life. I am glad that the doctors did not have to do emergency surgery on me at 16.
I have been able to “control” my Crohn’s disease with my medications still to this day. I was started on an infusion every 8 weeks of Remicade at the Children’s Hospital in Norfolk, Virginia. This would soon become every 6 weeks, and then every 4 weeks. My body built up a tolerance to the Remicade and it was no longer working. After Remicade I was switched to a drug called Humira. I remember the first day I went to the doctors for my injections. I had 4 shots that I had to do in that office that day. I was afraid to give myself a shot. I could have sat there for hours without doing a shot, but I had to show the nurses I could do so myself in order to be on the medication. The Humira had to be kept in the refrigerator until injection time. I found out that day that you should get the shot out about ½ hour prior to doing the injection! The Humira was like a pen, you pressed the top of the shot down and it would shoot the needle into your injection site and release the medication. I remember the sound and the pain vividly. It burned so bad and I immediately had swelling around the site. What in gods great glory is in this medication, and how in the world am I going to sit here and do this to myself 3 more times? I don’t know how I did it, but I did. This was good. I can now move back home and be closer to family and friends.
I would struggle to find a good doctor locally, so I ended up seeing a doctor in Pittsburgh. Dr. Baidoo was with UPMC Presby, and was by far one of the greatest GI docs that I have had. It was about 2015 when I would be hospitalized for the first time. I was at work and I began to have severe stomach/lower quadrant pain. This was the worst pain I had ever experienced in my life at that point. This would be the first time I would be admitted to Mount Nittany Hospital. I was terrified. My Dad and Tyler (my high school sweetheart, it’s been 14 years together in August) were both by my side as much as they could be. The staff at Mount Nittany were so good. The doctor explained everything that was going on in terms for my family to understand. The nurses would check on me, even if I didn’t use my call bell. This was an experience I will never forget. I was so afraid and the staff were so good to me, and after a week of being admitted I was finally allowed to go home.
One little funny story I remember from this stay was that I was having trouble sleeping, I mean who wouldn’t in a hospital alone? The doctor gave me Ambien one night to assist with sleeping. I had taken this before and I never had a problem with it. For some reason I had a reaction this time. While I was asleep, I thought I heard Tyler calling my name as if he needed help. I got up and started to go out of my hospital room to help. As soon as my butt was off the bed, an alarm started going off. At this point I’m so confused on what is going on, as the nurses rushed into the room. The nurses got me back into bed and the man yelling was not Tyler… and he was not yelling for me. The man yelling was an old man, and he was yelling for the nurses. Why I even thought this was Tyler yelling at me is beyond me. The mixture of medications maybe? This admission to the hospital would be the first of many.
After being discharged from the hospital I developed C-diff (Clostridioides difficile). C-diff results from disruption of normal healthy bacteria in the colon, often from antibiotics. C-diff can also be transmitted from person to person by spores. It can cause severe damage to the colon and even be fatal. I had chronic C-diff for months, and because they couldn’t control it my dad decided it was time to yet again find a specialist that was not local. I ended up going to the Cleveland Clinic in Ohio.
This next part may be disturbing or TMI…. so if you have a queasy stomach, skip ahead to the next part. Since my C-Diff was uncontrolled no matter the treatment, the doctors decided to do a transplant… a fecal transplant. This has to come from someone you are close with, or a family member. Tyler didn’t hesitate for a second to agree, even though he looked as though he could have vomited in the office talking about it. Tyler would now have to collect a stool sample, and combine saline with it to liquify it for the procedure. I bet you are wondering how he did this. No? Well I will tell you anyways, and if you think your stomach gets queasy easily please skip ahead. So before traveling to Cleveland to spend the night, as we had to be up early for the procedure, we purchased a cheap little blender. (Add a cup of embarrassment at this time) Tyler got up in the morning and did his thing. After this was done on his end, no pun intended, we headed to the office where the procedure would be done. Who would have thought something so repulsive would have healed me? Tyler and I never have to actually get married now, as I feel we became one that day. I could never doubt his love for me after this. He cured my chronic c-diff and I felt so much better. I could never repay him for this. True love? I’d say so! What a saint. Ok, the disgusting part is over now.
I was on Humira for about 10 years when I started to develop side effects. My joints, especially my ankles, started swelling. I could barely walk without pain. The Humira was stopped due to it giving me drug induced lupus and enteropathic arthritis. I was then started on Stelara and shortly after would be on methotrexate injections as well. The Stelara is every 8 weeks, and the methotrexate was every week. I could barely find a spot on my stomach that didn’t have scar tissue to push through. I give all the props in the world to diabetics… Man, it hurts to push a needle through scar tissue! Nevertheless, we have to get through it. The methotrexate was starting to not work, so we switched to a drug called Leflunomide. Yay! One less injection I would have to do.
Now I have three silent illnesses to deal with. I struggle daily with these illnesses, mentally and physically. People just assume you’re not sick, unless they can see the sickness. I don’t know how many times I have wished that I could be as invisible as my illnesses. I know that this has been a long first post, but I wanted to give a little backstory of me so in the future you may relate to where I’m coming from. Thank you for taking the time to read this! Please do not hesitate to ask any questions or comment. Life is a series of baby steps, and I am so happy that I took these ones.