I've been waiting to write this post for FAR too long. Knowing how much reading other people's stories and blog throughout my journey with Crohn's has helped me makes me want to make this post 100% perfect for ya'll so I just keep putting it off. I have so many things that I can't wait to share that I feel will not make as much sense without hearing my backstory so it's time to buckle down, release any idea of perfection, and let my thoughts flow. Of course if you have any questions or I missed any important or relevant details feel free to ask.
I was diagnosed with Crohn's Disease a little over a year ago but have been struggling with this my entire life. Ever since I was young I had extreme stomach problems that the doctors chalked up to me being "anxious" or "I was just born that way". Well everyone... I was born that way, but the way I was born was literally making my body attack itself. I went through so many years of just assuming my stomach issues were part of everyday life and just no one else talked about it. I made it through high school and college, frequently getting sick with what I thought was just a crappy immune system (I literally got mono THREE times). I was exhausted everyday but thats what all college kids go through, right? Fast forward to being in my first "grown up" job while finishing school. I'm more stressed than I have ever been in my whole life and vomiting everyday... multiple times a day... every time I eat. After about a year of living like that I could tell me body was breaking down on me. I could barely get out of bed each day, my teeth were eroding, my throat was sore, my stomach felt like knives were stabbing it 24/7. I got an appointment with one of the leading Gastroenterologists in my area and he immediately said that I needed to cut my stress level. At this point I had graduated and been working intensely for a bit and I loved what I did but I needed to make a change. Life in the creative world was what I always dreamed of but it is not conducive to someone who is suffering with a chronic illness. The hours are long, the stress levels are high, and the health insurance is non existent. I ended up leaving my job while keeping very quiet about my health because I was honestly ashamed and didn't want to accept weakness or failure.
At this point in the Summer of 2015 I was a mixture of the happiest and most depressed I have ever been. I was lucky enough to meet an amazing man when I was on the brink of this health disaster who opted to stick things out with me. To get really real here.... I actually projectile vomited on our first date and made every attempt to try and leave early because I was sure he hated me. Turns out dating a nurse has it's perks and my throw up was the least gross thing he had experienced that week. While I was experiencing this amazing beginning of our relationship through these first months I was also struggling with the hell that my body was putting me through. Most days I was unable to get out of bed until maybe 1pm. I was so weak that the simple act of going to the grocery store was enough to knock me out for a good few hours. I went from being a 16 hour per day worker to someone that could barely get out of bed to go to dinner with her boyfriend.
My doctor put me through a colonoscopy, an endoscopy, and an MRI, as well as a ton of blood work, all which came back inconclusive. My symptoms continued to worsen and the doctor suggested I swallow a pill camera so we could see my entire digestive tract. FINALLY, a test with conclusive results. The pill camera revealed some serious inflammation and lesions in the part of my intestines that fell in the blind spot that can only be seen by this specific test. I was so relieved that there was finally something solid about my health that we knew. The next uphill battle was deciding on the right treatment.
I started on Xifaxan which was hell to get approved by my insurance company. After a two week course of that I saw no change so it was on to the next. I then started on Pentasa which is an anti-inflammatory that specifically targets the intestines. In 90% of patients Pentasa works wonders but I am in the 10% whose bodies are actually negatively effected by the drug. My intestines ended up so inflamed that the doctor thought I had a bowel blockage so I ended up in the hospital for a week on a variety of antibiotics, pain meds, and laxatives. (SIDE NOTE: This hospital visit is two and a half weeks into my brand new job that I got because I thought I could work again thanks to high hope that the Pentasa would work.... The dwindling bank account and growing medical bills were also contributing factors to my go back to work decision). During this time, my doctor visited me and said that it unless I wanted to continue with this quality of life I needed to switch to a biologic ASAP. I weighed my options and we decided on Cimzia for a variety of reasons. After my discharge from the hospital I worked with my doctor's insurance team to get Cimzia approved through my coverage. They agreed to cover half of the $3000 that was the cost of two shots once per month. My doctor used my case to rally for the drug company to cover the rest of my expenses which they ended up saying yes to. I was the first person in the practice to receive this new biologic and while that definitely made me nervous I was ready to do any and everything to get my life back.
I have been on Cimzia for about 9 months now and as much as I hate getting stabbed in the stomach with burning liquid once a month, I do love the improvements I have made. The symptoms that I was experiencing before were so life altering that it is hard to explain to someone who has not experienced it. My stomach permanantly looked like I have 7 months pregnant, I vomited or was running to the bathroom after every meal, and my face and body were broken out in hives. No matter how much gluten I cut out or how many homeopathic remedies I tried, it was clear that my case really did need some extra help. I'm not going to lie, the side effects of Cimzia do suck sometimes but every time I get annoyed I think about the amazing quality of life I wouldn't have if it weren't for those injections.
As you can tell Crohn's Disease awareness is something that I am extremely passionate about. Many members of my family suffer with cases of IBD ranging in severity. I went over 20 years being kept quiet so now it is my time to share and let others know that being an advocate for your own health is crucial. Chronic illnesses are so difficult to diagnose but if you feel that something in your body isn't right you should act on it, because you know your own body.
Now that I have shared my story, I feel more confident sharing my day to day life and struggles. The only Crohn's community helped me so much when I was first diagnosed and still helps me until this day so I am striving to be that same resource now and give back. If you have any questions regarding my experience, my treatments, or anything else, please feel free to comment or contact me directly
Blonde babe. Maryland native. Crohn's crushing puppy mother to two sweet rescues.
Welcome to my unfiltered commentary on crushing chronic illness in your 20's and everything that goes along with that.