If you haven’t read about the signs and symptoms I experienced prior to my diagnosis, you can read about that here in part one.
A lot of individuals with IBD recall many years of digestive distress. In fact, for autoimmune diseases in general the average time to receive a diagnosis is 4.6 years and an average of five doctors. That was not my story (not exactly, that is). As I previously detailed, I had a long history of seemingly unrelated health issues. That all changed in August of 2014 as a senior in college. The first symptom that caught my eye was the blood. Not a lot of blood, but after using the bathroom I wiped and to my surprise there was bright red blood. I didn’t panic at all, in fact I remember thinking it was a fluke and it would probably resolve itself overnight. However, it didn’t go away. It didn’t immediately worsen either. I didn’t have the characteristic blood filled toilet bowl or anything all that alarming. I happened to have a doctors appointment at the campus health center the following week, so while I was at my visit I mentioned it to the physician. She told me it was nothing to worry about, probably just hemorrhoids. I think she may have even suggested I pick up some hemorrhoid cream at CVS. I remember feeling relief that it was only hemorrhoids and I went on with my busy college life.
A few weeks later I started to notice something that I hadn’t previously. I realized I was waking up in the middle of the night to have a bowel movement. I don’t think I noticed it immediately because I would sleepily stumble into the bathroom and immediately crawl back into bed half asleep. However, it grew more frequent, sometimes multiple times in a night and it caught my attention. Around the same time I had a small incident that caught my attention. I was studying late one evening at the dining room table when I felt the need to pass gas. So I did, except that after I did, something didn’t feel quite right. So I went to the bathroom and to my horror I realized it was slightly more than just gas. That had never happened to me before and I was completely mortified!
Not long after that incident I had another that caught me off guard. At the time, I had a roommate in my apartment and we shared a bathroom. One afternoon she was in the shower and I suddenly had the urgent need to go to the bathroom. Of course the door was locked and I had no access to another toilet. The panic set in as I desperately tried to hold off the urge. I had the chills, the sweats, the goose bumps and the all too familiar cramping sensation. It became very clear in the minute that followed that I was not going to make it. So, I did what any logical college student would do. I pooped in my trash can in the middle of my bedroom. Yes, that really happened. Not unlike the previous incident, I was completely and utterly mortified. I wish I could say this was the only time in my life that I relieved myself in a “less than desirable” location, but alas it is not. Feeling much better, I immediately panicked on how to get rid of the waste. I was horrified at the thought of anyone seeing it, so I remember triple bagging it in some grocery bags. I ran it to the dumpster in the parking lot all while praying no one knew what had just occurred. It honestly happened so fast I didn’t have much time to process it. I’m not sure if I was more embarrassed or in shock in the moments that followed.
Off to the doctors
The combination of the blood, night time bathroom trips, and my two accidents was enough to prompt a visit to the walk in clinic a day or two later. I explained what was going on and the doctor decided they needed to do a digital exam. For anyone not clear on what that is, I suggest a quick google search. Once again completely mortified, I agreed to the exam. Unfortunately, the doctor did not find any evidence of hemorrhoids and I was encouraged to see a gastroenterologist. Since I was away at school I didn’t have access to my regular doctors, so I scheduled an appointment with the nearest GI facility to campus. At the appointment the doctor said I would need a colonoscopy. There was no mention at this time as to why they wanted a colonoscopy and I think I was in such horror at the idea of a colonoscopy at the age of 20, that I didn’t even think to ask. After scheduling the procedure I went back to my apartment convinced I could fix “this” and I wouldn’t need the procedure. I picked up Metamucil (thinking maybe I needed more fiber) and I picked up some yogurt (thinking maybe I needed some probiotics). Surely I thought, these few changes to my diet would solve the problem! Spoiler alert…they didn’t.
So, the week before Thanksgiving I blindly braved the prep for my procedure. Colonoscopy prep varies depending on the prescribing physician. For this prep I was told to limit fiber a few days before, take a Ducolax, and then drink an entire bottle of Miralax. I was also told to mix the Miralax with Gatorade for electrolytes, but as a nutrition major I had enough sense to skip the artificial colors and chemicals. Instead, I opted for coconut water. The coconut water served its purpose at the time, but to this day I can’t go near the stuff. It immediately brings me back to the horrors of my first prep. The prep went like you might expect, with about 150 trips to the bathroom. After some time I decided to just settle in to the bathroom. I remember I was rewatching old episodes of Gilmore Girls with my laptop propped up on the sink in front of the toilet. Anything to distract me from the burning sensation radiating from my butt hole! Out of sheer desperation I called my boyfriend and asked him to pick up something for my bum. I think I specifically asked for diaper rash cream, but bless his heart, he showed up forty minutes later with some sort of lube which didn’t quite serve the purpose. It was actually quite comical despite the pain I was in!
Shortly after midnight my body decided that violently eliminating from one hole was simply not enough. Ah yes… I began profusely vomiting while simultaneously loosing fluids out the other end. Honestly by this point nothing but water was coming out of me. Unfortunately, I still had Miralax to take, so I continued on with the prep in what can only be described as a rhythmic pattern of sip, vomit, poop. It lasted through most of the night and I don’t think I slept except for small 20 minute bursts here and there. Luckily I had an early morning appointment. Sweet as he was, my boyfriend came with me to my appointment. My mom also drove down for moral support. As the three of us showed up to the endoscopy center I had to dart out of the car to the nearest restroom. It honestly felt like it would never end, but after getting checked in I was brought back and prepped for my first ever colonoscopy.
What followed was pretty standard. After being wheeled back into the room, they told me to roll over on my side for easy access (how dignifying!). After setting up an IV, I counted backwards from 10 only to get to about 8 before I was sedated. Next thing I knew I was in recovery looking at my boyfriend and mother through groggy eyes. I was still pretty out of it when my mom and the nurse asked if the doctor had spoken to me about my results. I told them both no and we continued to wait for him. Unbeknownst to me, the doctor HAD already talked to me, but evidently he jumped the gun on that conversation, because I didn’t remember a darn thing! Eventually he returned for a second time.
It was there that he told me I had Inflammatory Bowel Disease. Specifically, he believed it was Ulcerative Colitis, but he was waiting for a few biopsies of my small intestine to rule out Crohn’s and Celiac. He wrote me a prescription for a drug called Lialda (mesalamine), which is nothing more than a glorified anti-inflammatory. He simply told me to take four of them indefinitely before walking away. In the minutes that followed I was hit with a wave of emotions. Still a little groggy from the sedation, one of the first things I said to my mother was “I want to be best friends with Danielle Walker”. If you aren’t aware, Danielle Walker is a renowned recipe developer and author who has used food to help heal her Ulcerative Colitis. The irony was that I was a huge fan of her recipes and had heard about her struggles with UC long before my own diagnosis. At the time, she was the only person I “knew” with the illness. I had so many questions and desperately wanted to talk to Danielle. Of course, to my disappointment that wasn’t really an option (I did get to meet her about a year later at a book signing though!). You can check out some of her amazing recipes here.
A Life with UC
To say that I left the endoscopy center that November unprepared for the diagnosis I received is an understatement. In fact, it often makes my blood boil just to think about it. Unfortunately, my story isn’t all that different from many others with IBD. Many doctors fail to adequately prepare their patients for the realities of the illness. While there are a few lucky ones who experience minor symptoms throughout their lifetime, that’s the exception, not the rule. I unfortunately, was not the exception. The years that followed have been filled with trials and tribulations all too common for someone with IBD.
You can read more about my journey in part three here.