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IBD – A Frightful Disease

Halloween is one of my favorite holidays. Mostly because I love the fall weather, the colors, the scents of the season and of course, getting to dress up and pretend to be someone or something else for a day. One aspect I’ve never liked about Halloween is the horror. I’m the first to admit that I’m a scaredy-cat. I don’t like scary movies, ghosts, or gory flicks. I’d much rather watch movies like Hocus Pocus, Double, Double, Toil & Trouble or It’s the Great Pumpkin Charlie Brown!

I have faced enough horrors in my own life to last a lifetime of horror movies. Living with a chronic illness can be a horror story all it’s own, but sometimes it can seem like a never-ending horror story. There are so many close-calls and plot twists, not to mention the blood, pain and treatments that are worthy of a Vincent Price movie.

In honor of Halloween, I’d like to present my top 3 scariest moments living with ulcerative colitis that I think many patients can relate to. You are NOT alone, guys.

#3 Initial Diagnosis

Number three on my list of top scariest IBD moments was the initial diagnosis, and the days leading up to it. For about a month I was having GI bleeds and 20+ bouts of diarrhea a day. I had convinced myself I only had a stomach bug that irritated some hemorrhoids. When I handed my doctor my stool sample, I was mortified by the nurse’s reactions to it. They were disgusted, which told me whatever was going on was really bad news. Then my doctor sent me to have an emergency colonoscopy and I was left fearing the worst. A few days later I was diagnosed with ulcerative colitis. I didn’t think it was a big deal at the time, but it has proven to be the worst news ever.

#2 Beginning Biologics

Fast forward two years… my maintenance medications weren’t working. My doctor wanted me to try biologics. This really scared me because for years I’d been reading about the horrible side effects. One of which was that you could die suddenly from asphyxiation two weeks after your first infusion. This is very rare and your healthcare professionals work very closely with you to prevent this from happening. I am not ashamed to admit that I actually cried during my loading dose of biologics. I felt defeated. Like I had lost my battle. Like I had failed. But there was nothing for it. I had to try or keep suffering.

#1 Surgery

Unfortunately for me, biologics weren’t helping and I was getting sicker and sicker. The PumpkinProfilePrednisone even stopped helping me. There was one night where I went to the Emergency Room twice. The second time they admitted me for severe dehydration. Shortly after that, I was told that it was time for surgery. I hate even thinking about that time in my life because it brings back such horrible feelings with it. Feelings of despair. Feelings of hopelessness. Feelings of intense fear. I had multiple breakdowns where I felt like I was going to die from the grief that surgery brought on. I even had some scary moments after surgery. One of those being a huge abscess wound at my incision site that had to be opened, drained and packed for several weeks. It was a nightmare.

Thankfully having IBD isn’t always doom and gloom. There will be good days, bad days and really, really bad days, but I am thankful that I am still alive. IBD has robbed me of so many things, but I still hold that it is both a blessing and a curse because I have also gained so many things. One of those being the friends and relationships I have built with others who also live with IBD and understand what it’s like.

What are some of your scary IBD moments?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.