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blog/ July 19

My ulcerative colitis story

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In 2020, I began having strong, irregular stomach issues. I honestly felt like a toddler when I would tell people "My TuMmY hUrTs" in attempt to explain just how unusual they were because it wasn't your average stomach pain.  I figured the episodes were food related but I could never pinpoint what was causing them. The pains would normally pass within 2-3 hours but ONLY if I laid down on my side. If I ignored them, it would only get worse to a point that I couldn't walk.  Most of the time I would keep it to myself, suffering silently and ignoring all of my body's red flags but within a 2 month period, I had racked up 4 ER visits. 

 

Each visit was the same thing...Blood tests came back fine, ultrasounds didn't show anything abnormal, and because I was lying in a hospital bed- within a couple of hours the pain would pass, and they would send me on my way with no answer. On the 5th ER visit - they noticed my hemoglobin levels were low along with some inflammation, so they gave me a blood transfusion and steroids then sent me on my way again with no clear answer as to what's going on.

As time went on, it only got worse. The stomach pains were more frequent, I couldn't hold anything down...not even a drink of water. Everything would pass right through me and it was only liquid/bright red blood.

One day when I was walking back into my apartment building from letting Finley out to use the bathroom, I ran into an older neighbor that I also see at the YMCA. He immediately asked me if I was okay because he hadn't seen me in a while and pointed out how pale my face was. As we were walking up the stair's mid conversation, I fell over and passed out. I regained consciousness a few moments later, he was in panic mode but helped me back to my apartment and asked me if I needed to go to the hospital. I told him I would get a ride, but I lied. I just went and laid back down. 

 

It eventually got to a point where I couldn't take care of myself. I had no energy to do anything other than get up and walk to use the bathroom. When I would try to shower, I would get dizzy within a couple of minutes just from standing. 

I was so defeated and numb to everything. I mentally accepted the fact that this is how things were now because the doctors weren't giving me any answers and didn't take me seriously. My parents were constantly checking in on me, but I never told them just how bad things were...until March 26th. I woke up and immediately knew something was different. I had never experienced this level of fatigue and exhaustion. I remember laying on my bed, unable to move and started sobbing. I truly thought I was dying. I called my dad and told him I needed to go back to the ER, for the 6th time. Praying that this time would be different. 

 

They did the usual tests, asked a million questions, and immediately put me on fluids because I didn't have solid food for weeks, the only thing I was consuming was Pedialytes and vanilla ensure shakes. The doctor had to weigh me from the hospital bed and I was shocked at what he told me..I had lost 25 pounds within the last month and a half. My hemoglobin level came back at 4.7g/dL  (normally should be at 12-15g/dL). This is extremely dangerous and if I wouldn't of gone in that day, it was only a matter of time - I was a ticking time bomb. I was given multiple blood transfusions and they told me I was going to be moved out of the ER and into a permanent room. This was the first time in months that I felt any sort of relief...they were finally going to help me. 

 

Doctors continued to come in and out of the room asking questions, I was hooked up to wires, machines, fluids, and I couldn't fully process the situation because it was all so much going on at once. After all of this, they mentioned it could potentially be ulcerative colitis or crohn's disease but needed to schedule an urgent next day colonoscopy to confirm.

To prep for this surgery, I had to flush my system for them to get a good look at my colon.  So, they gave me 4 liters of laxative solution to sip on for the entire night. The next day, the colonoscopy went as expected and I was woken up with the news that my colon was in fact (pardon my language)...very fucked up. The doctor showed me pictures comparing a normal colon to mine and it was shocking but also...not? All I could think was..how the hell did I get to this point? How did none of my previous ER visits not catch this sooner? They told me that if they couldn't control the inflammation with treatment, that we would need to consider a ostomy pouch. Now, it was a waiting game until I met with a GI specialist. 

A few days passed; they told me my body was responding well to the medication, so the ostomy pouch was beginning to sound like it was off the table which was a huge sigh of relief. After about a week, the doctors decided it was okay to be released so long as I had a full-time caregiver. I was still heavily medicated, but my hemoglobin levels were up to 8g/dL and I was starting to regain some strength. During my first visit with the GI doctor after he reviewed all of my charts, I was finally given an answer...I was diagnosed with severe ulcerative colitis. At that time, I was taking steroids for the inflammation, but it wasn't a long-term solution. A few days passed, I was lying in bed and felt a wave of anxiety. I thought it would pass, but it only kept getting worse. I felt like a massive object was on my chest and I couldn't catch my breath. I knew this wasn't normal and needed to go back to the ER. The nurse was going through the long list of medications I was on and noticed the hospital accidentally prescribed twice the amount of steroids then what I should've been taking so I was on the verge of an overdose. This felt like the cherry on top of the cake. 

During the 2nd visit with my GI doctor, they introduced me to a new treatment plan that was a self-injectable medication called Humira. I asked about alternative options, but this was the only solution that was given to me. I agreed, not having any other option and picked up my first supply up that same day and the total bill for a months supply came in at a whopping $9,500 for a 2 week dose..so, that's great. Without assistance programs, there is absolutely no way I would be able to afford this medication. 

 

I began to taper off all other medications and started to feel like myself again and less like a zombie.

I developed quite a bit of shame around this whole situation in general.

Mostly for not advocating for my myself more and hiding it from my friends and family when I knew I wasn't okay. 

The hardest thing I’ve had to deal with since my diagnosis is not feeling safe in my own body. For months it was screaming that something was wrong, only to be told the opposite. This was the loneliest I had ever felt.

I still give myself the Humira shot every two weeks but, I've missed doses due to it needing to be stored at a specific temperature and going bad; our fridge broke down twice, and it's hard to travel with. This will leave me with no medication for weeks or up to a month and because a month's supply costs $20k+ through insurance, they don't issue refills. Within days of missing my medication I notice my body showing signs of remission, usually ending up with another flare up and am reminded that I cannot live without it.

I am three years into a lifelong journey and I’m still learning to give myself grace while figuring it out.

Thank you to everyone who read this.

Thank you to everyone who has supported me and my health journey so far, especially my dad who was my rock the entire time.

You listened.

And that means more to me than anything.

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