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My ulcerative colitis diagnosis story

On paper, it looks like receiving my UC diagnosis was relatively quick and easy. Some doctors here, some tests there and then bam. Here's your new diagnosis and have a nice life. I'd love to say that it was as easy and painless as it looks on paper but it was neither easy nor painless.

In reality, I had been experiencing UC symptoms for well over a decade before I got my diagnosis and the delay in getting that diagnosis was all on me. I was so young and absolutely mortified by some of the things that were happening to me and couldn't fathom the idea of having to tell someone about, gasp, my pooping habits.

Accidents from ulcerative colitis

I remember the first time I lost control of my bowels in my sleep; I was at an overnight summer camp when I was about 10. I was too embarrassed to say anything so I removed my sheets and slept on a pile of my clothes for the rest of the week. In high school, sometimes I'd have accidents while running at softball practice and decided that instead of telling someone, I just wore a pad every day.

I knew these things weren't normal but I was too embarrassed to say anything and I wasn't experiencing any pain or blood in my stool at the time, so it was pretty easy to pretend like it wasn't happening. My child's brain rationalized it by thinking that other than the fact that I had accidents here and there, I didn't really have any evidence that anything was wrong.

My first experience with a GI doctor

In college, I had a newfound sense of independence and was out from under the eyes of my parents, so I decided to make an appointment to see a GI. I still hadn't told a soul about anything I had experienced and made sure that I found a female GI because verbalizing this was going to be bad enough. I couldn't imagine trying to talk to about it with a man. I told her what I had experienced in the past few years and she insisted that I needed a rectal exam and I very reluctantly agreed.

What she didn't tell me, and I was too green to realize, was that I was at a teaching hospital. She then invited in a group of students to witness my rectal exam and in the same process completely scaring me away from any future GIs for many years. The findings from that terrible experience? No abnormalities and I was in perfect health. I now had a medical expert telling me that it was ok to keep ignoring the symptoms I had and I was more than happy to follow that advice.

A second opinion after seeing blood in the toilet

It wasn't until my early twenties that a friend had convinced me that bright red blood in the toilet, was in fact, not normal that I decided to see another GI. I remember nervously walking into the exam room, still traumatized from my last GI visit years before. This time I knew whether or not to ask if I'd have an audience.

I told the doctor that I often had a lot of constipation and I think this is when he stopped listening because from then on, he prescribed only increasing doses of fiber. For months I took the fiber as prescribed and had zero changes in my symptoms. In fact, I'm pretty sure they got worse; I know there was more blood.

Looking back at this time I wish that I had been more educated or had someone to advocate for me because I felt very lost in the whirlwind of appointments and tests that never seemed to produce anything. I didn't even know what we were looking for. I had tons of blood work done but I didn't know what they were for or what the results were.

I did a Prometheus test, which was looking for celiac disease, but came back normal. I agreed to every test even though I didn't understand what they were for and by now I was sincerely regretting starting this whole process. I was frustrated, perpetually embarrassed and still not seeing a change in my symptoms. All the while I was shoving more fiber down my throat.

Pain and a flex sigmoidoscopy

After 3 or 4 months of increasing fiber with no positive results, my GI decided it was time to do a flex sigmoidoscopy and it felt like this was the worst possible prospect at the time. I was 24 and this guy wanted to stick what...where...why? What were we even looking for?

I hadn't yet learned how to advocate for myself or how to ask more questions of my doctors, so I agreed. I didn't even know what a flex sigmoidoscopy was but I knew it would be awful and that I’d be awake to get the full experience. Within seconds of beginning the procedure, I knew EXACTLY what a flex sig was, and that it was causing me massive amounts of pain. I didn't know what I was seeing on the camera but I began begging them to stop because it was becoming unbearable.

Despite my pleas, they didn't stop and instead completed the entire procedure. I laid on the exam table after it was over trying to work through the pain and it was at this moment that the GI came over, patted me on the shoulder and said "Don't worry. It's just ulcerative colitis." He told me that he wasn't expecting UC because my reported symptom was mainly constipation and since that's not common in UC he didn't bother to look for it sooner. I wish I was making that part up.

The impact of a UC diagnosis

After a decade-plus of symptoms, vials upon vials of blood work, two different GIs, more fiber than I care to remember and one flix sig...I now knew what was going on. Judging by my doctor's cavalier attitude, I thought this was going to be a "no big deal" diagnosis but at that moment the trajectory of my life changed. While my diagnosis may have been “just ulcerative colitis” to him, for me it meant years of pain, surgery, and poor mental health. While I have no doubt grown and even flourished since this diagnosis, I wish that the diagnosis itself had been a more empowering and validating moment in my life.

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