Britt's Crohn's Journey

08/07/2024

The Ulcer Odyssey: A Comedy of Crohn's and Car Trouble

What a year these past couple of days have been! It all started Friday night when I got a migraine that felt like my brain was throwing a rave without inviting me. The night was a blur of throwing up, chills, and sweats – basically, a really bad first date with myself. Sleep? Who needs it!

By Saturday, my throat decided to join the party, swelling up like it was trying to win an award. My gums were screaming in protest, and I was pretty sure this was Crohn's making its dramatic upper GI tract debut. Did I go to the ER? Nope! Bella-time is sacred, and I’m stubborn like that. Besides, I had an appointment with my gastroenterologist on Monday, so I figured I’d tough it out.

Fast forward to Monday, and my mouth, throat, and esophagus were hosting an ulcer convention. Imagine a burning sensation that gets worse with every sip of water. I hadn’t eaten or drunk anything since Sunday, so I was basically running on fumes. My diet? Tylenol, ibuprofen, Mylanta cocktails, and Orajel spritzers. Mmm, delicious!

My doctor had his own agenda: convince me to take biologics for the umpteenth time. This time, I caved. I mean, clearly, my DIY approach wasn’t cutting it. Enter Rinvoq, a pill that’s supposed to work by day two. No needles – just how I like it. Dr. Siegel also sent me to get tested for strep, which came back negative, but my heart was racing like it was trying to win the Indy 500. Off to the Concord ER I went!

The ER was a seven-hour nightmare of not knowing what was happening. Finally, a resident popped by to tell me my labs were “send away labs” and would take a few days. Great, thanks for the info after holding me hostage all day!

Today, I had to drive to Lebanon to pick up the Rinvoq. Easy peasy, right? Ha! On the way, my car decided to be dramatic too. A tire was losing air faster than my patience. While using my car air compressor, my hair got too close and – you guessed it – got sucked in. I had to rip it out. Fabulous.

A nice kid at a garage in Andover took a screw out of my tire and patched it, but the car still felt off. So, I called in backup – my stepdad – to get me to Dartmouth. What a fiasco! I was weak, feeling like death warmed over, but determined.

The doctor says the meds should start working by Thursday. Fingers crossed, or else someone might just have to face the my wrath!

07/16/2024

Looking back on the past ten-ish years, I have only survived. Really since I was diagnosed with crohns at 15 and going on disability at age 25, made me feel useless. Yeah, I worked here and there but nothing was fulfilling. Growing up with a chronic autoimmune disease sure does have an effect on your mental stability. Looking back at all the s**t I've been through, I do have to say, I never IMAGINED I'd be on a PTO, nevermind being the treasurer of a whole district. It feels good and I'm super excited to see what the future holds.

05/24/2024

"The Day I Almost Throat Punched a Doctor"

F**kkkkkkkk is really all I can think of. I love my P*P, but boy, do I dislike her co-workers. For what feels like the millionth time in 21 years, I believe I'm dealing with erythema nodosum again. I specifically told this doctor that's what I think it is, but the swelling in my leg is getting bigger, the bumps are redder and more painful, and it's spreading to cover more area in two spots, which I haven't experienced before. Oh, and let's not forget the psoriasis in my belly button.

He says, "I don't know much about erythema nodosum, so let me go do some research.

"Oh sure, go ahead and research the thing I've had for 21 years.

He comes back into the room and, I s**t you not, says, "Erythema nodosum is a symptom of a Crohn's flare. You can get it by being stressed out. It's inflammation of the fat right underneath the skin. It usually only happens on the legs."

"Wow, thank you, Dr. Google. I had no idea."

Not only did he try to mansplain to me what stress is, but he came back and told me EXACTLY what I told him about it being a flare.

Then he says, "Oh, I do believe it is erythema nodosum, so just wait it out.

"Ah, of course. Wait it out. Brilliant."

I wish I got paid big money to tell patients what they just told me.

02/08/2024

❤️

12/23/2023

12/20/2023

"Let's try another drug," he said. After cautiously telling him I don't want to be on any more drugs that will suppress my immune system. "I almost died twice in one year because these biologics are pure poison. I'll be damned if a cold kills me after crohns trying to kill me for more than half my life. Do you remember I had to be put in a coma so my body could fight off an infection? Do you remember I scratched my leg and got an infection so bad and they couldn't even FIGURE OUT what infection I had so I was pumped with 10 different antibiotics. Why the hell do I want to be on drugs like that?" "Well," he said, "There is a new drug called Skyrizi, and it doesn't have the same infection rate has the Humira and Stelara." I told him, "I just want an ostomy bag. I don't want to be on these drugs that have a billion side effects and can kill me easier and faster than my Crohns. I can't sleep for more than three hours because I have so little intestines left that I'm waking up s**tting the bed. I constantly have to yell at Bella, hurry up, I have to go to the bathroom and I think it would improve my quality of life greatly." "Take this bile binder and benefiber and I bet you'll feel better." What a fu***ng joke. I haven't been this sick and in this much pain in years. I do wish my step mom was still here because she was teaching me all about the ostomy bag before heaven gained her as an angel. I'm not scared of having one, really, because I've dealt with having a PICC line in four different times and would have to take care of that. A PICC line is a type of long catheter that is inserted through a peripheral vein, often in the arm, into a larger vein in the body, used when intravenous treatment is required over a long period. It was keeping me alive because I couldn't eat. So I would get IV food. So, I just have to email my doctor and let him know I have decided not to try another medication but to get an ostomy bag. I figured I'd starting blogging again since I will be on a new journey to not getting sick all the time.

10/13/2023

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08/30/2023

Be proud of your weirdness!