This is a different post than my usual but with my recent events, I thought that I would share my story. I haven’t shared much about my disease before because to be completely honest, I’m still learning a lot myself. But here’s my adventure thus far.
In 2013, I started to get frequent stomach pains, bloating, indigestion, amongst other unpleasant symptoms. These symptoms would come and go often and were especially prominent after I would eat. I was seen by my doctor and he didn’t seem too concerned about it. He gave me some medicine to help with the digestion issues and sent me on my way, telling me to report in after a few weeks to see if there were any changes. After being on medications for close to a month with little to no change in my symptoms, I went back in to tell my doctor. I went through a series of tests to see what could possibly be going on but results on testing all came back negative, I was perfectly healthy — or so they thought. I went home empty handed with no explanation as to why I was feeling the way I did. From a little kid, I have always had mild health issues. This made me adept to staying in tune with my body and I was able to tell when something was wrong. I knew that something with my results were off and I didn’t feel like a normal, healthy teenager. Feeling defeated, we pushed the issue under the rug and I continued on with normal day-to-day life, suppressing my symptoms as much as I could.
About a year went by and I was back at the doctor, unable to ignore my symptoms as they started to get more noticeable. My doctor decided to test for a lactose intolerance, reasoning that my symptoms might be due to my intake of too many dairy products. He said that the blood work for lactose intolerance showed little to no evidence and that the best test to start off with was to take dairy out of my diet entirely or as close to entirely as possible for two to three weeks and see if my symptoms got better. I started a new diet for the next several weeks, careful to consume any sort of dairy to get clear results. However, after the two or three weeks went by, I felt more confused than before. Taking the dairy out of my diet seemed to help on some days and do no good on others. I began to feel discouraged again and went back to the doctor to share my findings. After more blood work and waiting, we yet again had no results and decided to push the lactose intolerance aside. I was on yet another medication to settle my stomach and sent home again.
The next visit to the doctor several months later brought up another possibility of what could be wrong. I was tested for Celiac’s Disease, otherwise known as a gluten allergy. This too was a blood sample taken. Unfortunately, this test would also tell very little. If it was positive, I did have Celiac’s Disease. If it was negative, it was unsure. I could still have it. The only real way to know for sure was to do a scope. The test came back about a week later and again, was negative. The final test that my doctor could think to test me for came back as a no go and I felt frustrated. I was going home with no more answers than I had before, more than a year after the start of this process. I couldn’t understand why my doctor wasn’t getting any results and in the meantime, my symptoms continued to get worse and I was beginning to gain more of them. Things such as fatigue and weakness began to take place more often.
As time passed, I again went on with daily life and gave up on figuring out the source of my problem. I got used to living with all of the side effects of whatever was going on and this became my norm. It wasn’t until I went back into the doctor for a different minor illness (at this point I can’t quite remember what, I think maybe an ear infection or something of the sort) that my doctor had some sort of epiphany and had one more idea and just a sliver of hope. I was trying not to get excited because of the letdowns I had already experienced, but the thought of finally finding a diagnosis thrilled me. My doctor sent me to a gastroenterologist where I would go through a series of questions with a specialist and then undergo a scope and colonoscopy to get a better look at my digestive system. The scope would tell if I had Celiac’s Disease and the colonoscopy would look for anything else that might be causing my problems.
About a week after both procedures in late July, I got a call from the gastroenterologist. I was diagnosed with Crohn’s Disease. The most I knew about Crohn’s was that I had a friend in high school who’s older brother had it. Beyond that, I really had no knowledge on the disease.
“You have Crohn’s throughout your entire digestive system. It’s typically only found in the small intestine and colon but your case is more severe.”
I met with the specialist and talked about my diagnosis. We went over more information than I could comprehend and was given various packets and brochures to read over about the disease. For those of you who don’t know, Crohn’s is a chronic inflammatory disease of the intestines. It causes inflammation of the lining of the digestive tract, which can lead to abdominal pain, sever diarrhea, fatigue, weight loss and malnutrition. If left untreated, a person with Crohn’s can be rushed into surgery with severe pains caused by scarred portions of the small intestine which then have to be removed. It can inhibit the function of other organs as well.
The specialist and I discussed treatment options as well as a new diet, as my eating habits would have to change to fit my new lifestyle with Crohn’s. People with Crohn’s Disease are often affected by too much roughage, spicy foods, raw fruits and vegetables and sometimes too much gluten or dairy. Everybody is slightly different on what their “trigger foods” are but these are most common. My specialist told me that I would be started on Humira after getting updated on all of my vaccinations. One big caution patients are warned about is live vaccines. This type of vaccination is no longer allowed because the medication suppresses the immune system and makes the recipient at high risk of illnesses.
I began Humira, a pen that contains a shot of the medicine I need in order to achieve remission. Every 2 weeks, I would inject my stomach or thigh. At first, the results were amazing. I felt better than I had in almost two years. I gained back some of my energy, was able to eat almost every meal without instant stomach pains and bloating, had normal bowel movements, and overall just seemed to feel healthier. Roughly six weeks in to treatments, I began to decline again. All of my symptoms were coming back at a pretty rapid pace. I dreaded taking another shot because I felt no change and started getting reactions at the site of the injection. I became nervous, the thought of surgery and my declining health looming over me, always in the back of my head.
I tried several recommendations from the specialist to help the site reactions. I iced the injection site before and after the shot and also took Benadryl beforehand. Nothing really seemed to improve that problem, but that was only a minor issue in the grand scheme of things. My bigger concern was for the Humira itself, which didn’t seem to be making any improvements. The thing about Humira is that insurance companies prefer to start out with that before switching to one of the only other treatment options, a medicine called Remicaid. This option is given only after the Humira shots fail. It took roughly four months of persistence before I was finally considered for more testing to see how much Humira my body was metabolizing. This ultimately is just a fancy and officially documented way of saying the Humira doesn’t work. So after what seemed like an eternity, I went through the process of getting approved for Remicaid infusions. These infusions are three hours long, are done every eight weeks and are given in an IV drip.
Today, I sat through my very first infusion. A lifetime of this adventure is still ahead of me, but I am optimistic knowing that my doctors have finally found the root of my problems and a treatment to control it. I’m so thrilled to begin this new treatment and hopeful that it does a better job than the Humira. Crohn’s doesn’t have a cure but fortunately can reach remission. And I plan on doing just that.