Grab a snack cause this first post is a long one, starting off with my diagnosis.
In 2012, my world was forever changed when I was diagnosed with Ulcerative Colitis.
I was in my last semester of my undergraduate degree, ready to graduate (the world was my oyster!), and I started getting really sick.
It started out with really terrible smelling gas (seriously, like dying butt hole bad smell!). Then I was having very loose stool to diarrhea, bad nausea, and vomiting. The worst of it happened during spring break, so I really didn’t miss class – only work. My mom came down to help me and took me to the ER because I had gotten so dehydrated. They did some stool tests, gave me fluids, but nothing abnormal showed. They sent me home with a paper that had information on eating a BRAT diet (Bananas-Rice-Applesauce-Toast), which is helpful when you’re having diarrhea. The paper also included a few Gastroenterologists contact information in the area that they recommended I call and schedule and appointment.
I know my mom had a hard time leaving me, her sick only child who was losing weight, but she had to go back to work and I was no longer throwing up. I did have to go to the ER again for fluids and was thankful for one of my closest friends for coming to pick me up and take me, since I didn’t know that I trusted myself driving.
After that, I tried calling the GI’s from the list. The first one couldn’t see me for like 3 months, since I was a new patient. The next one did have openings for new patients, so I scheduled an appointment.
I’ll be honest, much of this first flare is a blur to me because I had a really bad experience with this first GI. He did some stool tests and had me try a probiotic. Of course, nothing came back from my stool tests and things were starting to go back to normal with my bowel movements. He essentially told me he didn’t want to do a colonoscopy on me because of how young I was (um, excuse me?!). I was 22 and had dropped probably 10 pounds in a very short amount of time.
I’ll never forget being in one of my labs for a class I was in and I let the TA know that I may have to dart to the restroom, giving a quick and non-graphic reader’s digest version of what was going on with me. It was then that one of my lab partners, and good friend, disclosed she had Crohn’s disease. She said, “I don’t want to freak you out, but it sounds like you have what I have.”
Things got better though. I graduated with my Bachelor’s in Science and didn’t think about the weird stomach stuff again. Until August that same year…
I had just moved to a different city and got a job at an animal clinic. I was maybe a few months in when I started to experience the same symptoms I had had back in March. I remember the night it started vividly. I had driven back to where I had been previously living to see one of my friends graduate from my own alma mater and we went out to eat with her family afterwards. I remember stuffing myself with steak and dessert, I definitely ate way too much to the point of uncomfortable bloating. On my 45 minute drive back to my new home, I was experiencing the most terrible stomach pain. Queue the excruciating bad gas smell from before (literal rot smell). I knew then that it was happening again. Then the diarrhea came, I started losing weight again, getting dehydrated, eating but not keeping anything in because I’d have to immediately run to the bathroom.
I got so sick that my parents convinced me to come home a) so they could help take care of me because I was desperately struggling & b) for me to come see my family doctor who had known me since I was a baby. My boss was great and let me take some time off.
As soon as I saw our family doctor he knew immediately something was wrong with me and suspected it was something with my colon. He referred me to a GI in town and called them to get me worked in ASAP. I was worked in that very next day to see the GI. The GI suspected I had ulcerative colitis or Crohn’s, however in order to confirm this a colonoscopy procedure needed to be done. They worked me in to get a colonoscopy in 2 days. My mom and I picked up the bowel prep that I would take the next day along with a liquid only diet.
For those of you who don’t know what a colonoscopy is a procedure where a long, flexible scope device is inserted through the rectum and follows along the colon. The scope transmits images of the lining of the colon where the doctor can see any abnormalities and take any biopsies. You’re under light anesthesia during the procedure, essentially having a nice little nap. The worst part is the bowel prep beforehand.
I feel like I’ve blocked out how bad that first one was because I was so sick. I do remember not drinking much of the bowel prep because I was so nauseous and didn’t want to throw it up. The nurse had told me beforehand that I may not even need to drink it all since I was already experiencing liquid diarrhea.
The next morning was my procedure. I got an IV hooked up, gown on, and was wheeled back to the procedure room. While everyone in the room was getting me prepped the anesthesiologist said to me, “Have you ever heard that redheads are harder to put under anesthesia?” I shook my head in horror. What the damn hell?! I was already so nervous and now I was terrified I’d be awake!
Needless to say, I had a good sleep with that anesthesia. So good in fact, when I came to my GI was mid-sentence talking to me and my mom. I half remembered what he said but he confirmed that I did have ulcerative colitis. He prescribed medicine that I would start immediately to help with the inflammation in my colon – imuran, balsalazide, and prednisone – and I would follow up with him within a month.
Side note: I was apparently so loopy from the anesthesia I do not remember asking my mom how I had gotten the coke in my hand (a running joke now), apparently I had asked multiple times. FYI, they give you a carbonated beverage to help you burp/pass gas since the procedure pumps your colon with air for the scope to go through easily.
While it was a relief to have answers, the worst had yet to come when that evening I started throwing up and within a couple of days I couldn’t even keep water down.
My GI admitted me to the hospital and I was given nausea medicine and fluids. I ended up with a picc line after a few days because of how abrasive the nausea meds were on my veins. I had my first CT scan and endoscopy procedure, to confirm it was just ulcerative colitis and not Crohn’s.
Finally, I stopped throwing up and was able to keep light food down. I was released from the hospital after almost a week.
I’d love to say that that was the worst experience I’ve had with my UC, but that’s just not how life works. I’ve been hospitalized 2 more times in the last 7 years since my diagnosis. I’ve had multiple colonoscopies, endoscopies, CT scans, picc lines, stool tests, bloodwork tests, and medicine changes.
I will share more about my experiences in the last 7 years, as well as various topics associated with inflammatory bowel disease (IBD). I wanted to give you the start of my story with IBD and UC. I hope to raise more awareness about IBD, as well as help anyone who is suffering from these diseases. Know that you are not alone!
Until next time,