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Community Experience Submitted by Gali Member
Jul 10, 05:07 PM

Living with UC so far

By Patrici

I was diagnosed with UC at the age of 13. It’s been almost 15 years since then. Middle school and high school were probably the hardest for me in living with this disease. I mean as a teenager you don’t really find too many other teenagers that understand what you’re feeling and going through.

It was challenging to find foods that wouldn’t upset the delicate balance. It felt like everything that I was supposed to be able to eat became my enemy. Veggies, grains, dairy were no-gos for me. I couldn’t stand the smell of taco seasoning or pizza. LOL Trying to explain to other teenagers that pizza made me feel sick was like I was speaking another language. 

And then there were the trips to the bathroom. When you’re in a school where you only get two bathroom passes a semester, others start to notice that you’re an exception to that rule and then explaining it to your teachers. Thankfully many of them were understanding but there were those few that thought I was cheating when we would have a test and all of a sudden I would have to go 5 times in 1 hour. Trying to explain anxiety and stress were triggers for me and the cold classroom, that was a tough one.

It helped to find an after school program that was more flexible and had others that had similar interests. For me, that was color guard. It gave me a place to belong and probably saved me from depression at a young age. Through the long bus rides to football games and band competitions, I was able to find some great coping techniques and learn really quickly which signs were more for warnings and then the ones that were my body’s way of saying get to the bathroom now. Music and sleep became my best friends and I learned that laughing and having fun were great distractors and decreased my urgencies tremendously.

I graduated in the top 20 of my class and even felt confident enough to move across states. I was a military child and had moved my senior year to Virginia. With the opportunity to do anything for college I found my way back to Texas where I had spent most of high school. I went to college in Austin with one of my friends from band and reconnected with other friendships. I didn’t realize going through high school and into college that I had never truly reached remission. I hadn’t bled like when I was first diagnosed but I also could not remember a day I had had a solid BM or even less than 20 trips to the bathroom.

My friends knew that when we went somewhere, I always had the bathrooms mapped out. They knew instead of finding them themselves they could just ask me, and I would point them in the right direction.

When I left for college I wasn’t worried about UC at all. It took a back burner as I developed into a young adult. I had become so used to living with my symptoms it became normal for me. It wasn’t until I met my now-husband, and we began questioning the possibility of having children that I took more of an active role in managing my symptoms.

With his encouragement that I was important and that my well being mattered, I learned about biologics. But before I could start treatment with any of them, we found that we were expecting. The wonderful changes of pregnancy threw me into remission for the first time in 10 years. A whole new world opened for me. I hadn’t realized how much pain I was in or how awful my food habits had become. Or even how many times I had really been going to the bathroom. But once I gave birth it returned almost with a vengeance.

I had terrible back pain for a year and my GI just thought I was having rectal spasms and then the fistula reared its ugly little head on Christmas Eve. It was then that my GI realized that after trying Entyvio, that I might be more symptomatic towards Crohn’s.

I failed Entyvio. We did a genetic blood test and it came back as UC. But we began to focus on treatments more in line for Crohn’s. So I began Remicade. After just a month of that, I became terribly ill. Almost as sick as when I was first diagnosed. I couldn’t eat for what felt like months. We had just bought our first house. And it was supposed to be an exciting time and I was having trouble even waking up to take care of my 3-year-old.

So I made the decision to stop Remicade and visit a homeopathic doctor, that my friend swore by. Sure enough, he had me feeling better within the month but his treatments weren’t covered by insurance so I couldn’t afford to continue with him. I went to a new GI doctor. He referred me to a CRS where I had a seton put in to help with the drainage of the fistula, and then I started on Humira. Soon after starting this, we found out that I was expecting my second born.

I began to get rashes on my forearms and then a couple of months in, I began to have injection site reactions. The area I would inject would swell and become terribly itchy. My urgencies began to come back. And with the unknowns of pregnancy, I stopped Humira going into my third trimester. Almost as soon as I stopped my skin rash went away and my urgencies disappeared. I was back in remission and I could eat whatever I wanted to again.

And then about a month after my second was born I could feel all my symptoms return. 

Slowly. I started Humira again. Only to have even larger site reactions. So with the doctor’s suggestion, we decided to switch treatment. I am waiting to begin Stelara. I’m hoping that this one takes hold as nothing else feels like it’s helped. Other than pregnancy. I’m almost tempted to request hormone therapy or something to make my body think it’s pregnant or something as those are the only two times I’ve ever gone into remission. 

I dread the day my doctor tells me we’ve tried everything. And that my only option is surgery. I’m a behavior teacher and am very passionate about helping my little guys that can be very physical. Something tells me I won’t physically be able to work with these children if I have no other option but surgery.

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