When I was first diagnosed with Crohn's disease at 19 I had no idea it would take me on this world wind of ups and down in life. Back then there wasn't as much information on the disease as there is now. Now when watching TV you see so many commercials on medications to help manage Crohn's. It has definitely taken its steps in to the light of awareness. Even with the awareness it has gained there still is a lot of information that isn't out there. when you research Crohn's disease you relatively get an granulomatous inflammatory bowel disease that can manifest any where in the digestive track. it is an autoimmune disease. Much is not know about exactly why this inflammation happens. The typical symptoms are nausea, vomiting, stomach cramping, and diarrhea. My experience with the disease has been that plus more. I did not have the typical manifestation of what Crohn's disease is. For a while I wondered if I was truly diagnosed correctly because when I look online I seen people pencil thin and with colostmy bag. My thoughts were "wait but this is not me, this is not how I look". Here's my experience with Crohn's and how I have to constantly adapt and make life changes to new symptoms.
In 2007 at the age of 19 i was diagnosed with crohn's disease. It started with abdominal cramping,constipation and nausea through out the day and in the middle of the night. The neausea eventualy grew to daily vomiting espisodes even when there was nothing in my body i threw up stomach bile. I could not eat with out experiencing these symptoms. I eventually lost over 30 pounds in a 3 month period. I weight 120 lbs which was my lowest weight I had ever reached as a teen or a young adult. my normal weight was about 150 pounds. One of my first exams was a CT scan, where they found my stomach lining was thickening. we followed up with an endoscopy where they confirmed the was extensive inflammation and ulcers. The doctor the decided to follow up with a colonoscopy where they found my intestines in the same condition as my stomach. I was diagnosed with Crohn's and prescribed Pentasa medication to help my condition. I remember thinking what the heck is that. because i had never heard or seen it anywhere before. now you see ads at the bus stops commericials. I did my research started the medication over time my body started to heal and I went into remission.
Although I did have mild symptoms here and there throughout my life, I always questioned if my diagnosis was correct. when you google people with this disease they tend to show people with more severe health conditions. It wasn't until 2017 that I started to experience a bit more severe symptoms associated with crohn's that are a bit more rare. Starting with granulomatous inflammation on my spleen, uveitis and joint inflammation. Now with social media I see more people on the healthier spectrum I can relate to which helped me embrace my condition and to adapt to it. I again went through extensive testing that had no explanation why I was experiencing this inflammation accept crhon's disease. I was put on Humira where my symptoms completely disappeared an I felt the healthiest I had felt in years. I stayed on humira to help with my symptoms until 2020.
During my first episode one thing that always stuck out to me was my doctor asking me if I was ready to have kids they because if I ever had to get on steroids it may stop me from having kids, which always terrified me. Fast forward to now 2021 where I am on steroids to help with my symptoms. This episode was the most random and non typical episode of my disease. although it is rare is not unheard of, but it is hard to find information on. I am still working my way to the healthiest version of myself. I'm may of 2020 I started to experiencing chest and stomach pain. it was different stomach pain and I was on humira so I never equated it to my disease but I still made sure I got checked out. I was not prepared for the turbulence I was about to go through for almost a year now. After loosing over 50 pounds, extensive testing, 3 hospital stays, numerous emergency room visits, surgery to remove my thymus, and biopsies it was confirmed I had granulomatous inflammation in multiple organ including. The chest and stomach pain I was experiencing turned out to be granulomatous inflammation in my lungs, liver, pancreas, thymus, lining around the heart and my scalp which caused me to have alopecia aerate. Yes I lost about 70% of my hair. I was devastated. My thymus was originally thought to be thymoma which thank goodness it was not. It was infact granulomatous inflammation. But the process of figuring that out took them going in to my chest to surgically remove and biopsy my thymus and the lung. while doctors told me its not unheard of but it is rare I researched and I haven't heard a story like this. After weeks of debating I started steroid therapy and I am finally on the track to healingand remission. my weight has stabilized. my alopecia has gone away and my hair is growing back. The granulomas are gone my lab works are normal. I am in the process of transitioning to Stelara from methylprednisolone. my goal is to get my self in the best health possible then try to manage it naturally.
For any one experiencing this you are not alone, it is not easy. I hope my story can help you put the pieces together and find the best treatment for you. alot of times people look at what you are going through and think it is you and maybe how you eat and how you take care of yourself. That is not always the case with auto immune diseases. I have always been a healthy eater pretty fit for the most part even at my heavist wieght. Stuffing my body with anti inflammitory foods and i still experinced this. It is alot meantally just as much as it is physically. Keep fighting and dont blame yourself.