Unfortunately, at the time, I had no idea that the hives were only the beginning of my struggles. About 3 months into dealing with the hives, I started to develop some uncomfortable digestive symptoms. I noticed some mucus in my stool, more urgency, and sometimes pain when going to the bathroom. It started out sporadically but soon became daily. Now it's the beginning of 2013 and my life is already flipped upside down between the hives and the aftermath of Superstorm Sandy. The stress was real and it was taking a toll on my health.
With a lot of unknowns for what the future held for my family businesses, it was clear that there wasn't much I could personally do to help. The buildings needed to be stripped and rebuilt from the ground up and now we just had to wait for the contractors to do the job. I needed an escape as life as I knew it was drastically changing so I booked a vacation to Hawaii with my boyfriend (Steve), sister, and her boyfriend so we could all get some time to relax and regroup. Had I known what that trip would turn into, I never would have gotten on the plane, but I was hopeful that some time to destress would improve my health.
It started out ok, my hives were doing a little better at this point, and my stomach seemed to be at least holding steady at first. We explored and relaxed in Honolulu for a few days and then headed to the North Shore where we would stay for about a week. Within just a few days the pain while going to the bathroom started to get worse and then I was seeing blood. I tried my best not to panic, because what were my options so far away from home? I was still able to eat and participate in whatever activities we had planned for the day, and I was just hoping I could get home before I had to address whatever was going on with my body.
After a week at the North Shore, we all went to Maui for another week and this is where things really took a bad turn. Within only a few days, I couldn't even be away from a bathroom for more than 5 minutes (bloody diarrhea). I was quickly becoming malnourished because food was passing right through me and I was in a lot of pain. I tried coconut water, gatorade, pepto-bismol, and imodium just to get by. It wasn't exactly the vacation I had envisioned.
The day I got home, I made an appointment with a local gastroenterologist. At my appointment he advised I get a colonoscopy to see exactly what the issue was. Though the thought of a colonoscopy scared me, I knew I didn't really have any other options. So when they tell you the prep is the worst part of a colonoscopy, they aren't kidding. This was my first one so I didn't really know what to expect, but since my body was in such a bad place to begin with, the prep was pretty traumatic. I still vividly remember how painful that first prep was, holding a bucket in front of me while on the toilet because the pain was making me nauseous. The next morning I had the procedure and was diagnosed with ulcerative colitis (UC), something I had never even heard of before. As per the definition: UC is an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers (sores) in your innermost lining of your large intestine (colon) and rectum. Now inflammation is of course a very real symptom, but that's really all it describes. It doesn't tell you what is causing the inflammation, why the inflammation is there, why your body isn't doing a better job taking care of it, etc. So being "diagnosed" with UC really just told me what my symptoms were, but that wasn't exactly useful information in my opinion, and to this day I am unsatisfied with this so called "diagnosis".
When the Dr. explained to me more about UC I was heartbroken, but he assured me that I would be able to live a perfectly normal life with the help of medication. I followed his advice which really only consisted of “eat whatever you want and take these pills”. I was so scared for my health and the thought of being on medication for the rest of my life starting at age 25 did not sit well with me. I cried for days just trying to come to terms with my "diagnosis" but deep inside I knew that something bigger was going on. For the next few months I would try every different pill that was approved for UC while also taking prednisone- a steroid drug that while necessary at times, is also very harmful to your body-but I still wasn't getting any better. I was in pain daily, had a hard time being away from a bathroom, and was losing weight rapidly. I wanted nothing more than the pain to stop. I was running to the bathroom 10, 15, sometimes 20+ times a day. Even at night, every time I would move, I would need the bathroom again. I couldn't eat or sleep and I felt like a shell of my former active and healthy self.
At follow up appointments I asked the doctor about different diets and how food can affect my symptoms and what could have been a cause, but I was always dismissed, told it doesn't matter what I eat, that's not causing my symptoms. At this point, I was still not very well educated in nutrition or health, but even so, I knew in my gut-pun not intended- that something about this advice was off. How can stomach issues not be affected by what I'm eating? Even healthy people can have a hard time digesting certain foods, so how was it expected that my inflamed intestines with ulcers should be able to handle whatever I feel like eating? A few years later I would find out that MDs get almost NO schooling or training on nutrition- WHAT?!?! How is nutrition not at the root of every doctors' practice? Yet another failure of this "healthcare" system.
Months into trying to get my body to calm down, I wasn't having much luck. I tried again and again to push the doctor to look harder, give me better advice, find something that would work, but instead I was met with apathy. Over and over I was told, "there is no cause", and that trial and error with different pills was the only way. Eventually I had enough and was tired of being treated like a complaining child. I had severe symptoms and the doctor showed no interest in actually helping me, only spending 10 minutes in the appointment with me after waiting sometimes two hours past my appointment time. So I left that practice to find a doctor that would listen to me, but even the next 4 doctors would continue to let me down.