About Ulcerative Colitis · Clinical Trial Series · Treatments

Clinical Trial Series: Week 16

Well the day has come and passed and we have lived to tell the tale of yet another colonoscopy- except this time it was a sigmoidoscopy. While they tell you that the prep for a sigmoidoscopy is much easier- I beg to differ and actually asked for the colonoscopy prep. That enema fleet they give you is the devil for me because of where my worst inflammation is located. It’s like pouring salt over an open wound. I could not shit without crying for DAYS people. And I had to shit more than normal because that was the entire purpose of the prep…..

But this time Brittany made sure to actually follow the recommended liquid intake guidelines and stay hydrated, so I managed to avoid getting a migraine. Thank God. Last time my migraine/headache lasted for three days and on the day of my colonoscopy I was so nauseous I could barely eat and eating is always my favourite part after fasting for 24 hours!

But here is the actual news

So for every other week between week 8-16 it was pretty standard. I went in to do a physical, pee test, lab work, and that was pretty much it. I didn’t have to do extra questionnaires but did have to keep up with my poop diary on the phone they give you. Week 16 you do a colonoscopy or sigmoidoscopy, 6 glorious poop samples (which FYI- negotiating with your boyfriend why you need to freeze your shit next to the bread was not a conversation I ever thought I would have to have in my life), lab work, physical exam, questionnaires, and an ECG.

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Everything kind of went by like a breeze. And this time I wasn’t even fully put under, although I mine as well have been because I don’t actually remember a lot…. if anything. I convinced myself I was not THAT high (because they gave me fentanyl) but when I looked back at the photos my boyfriend took I realized I was toast. Gone. My eyes were barely opened…..

BUT I keep getting side tracked.

Guys the good news is WE ARE SO CLOSE TO REMISSION. I see the light at the end of the tunnel. We are 95% there! All that is left to heal is near my rectum and even that went down from a moderate case to a mild case in 8 weeks and everything else healed (My score was a 1/3!). I was absolutely floored. I had been waiting for this day for so long and I didn’t fully understand how to process it all. It’s still a little surreal to me (mostly because I still feel like shit post-sigmoidoscopy). But we almost made it!

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So now we move forward to the next phase of the clinical trial where you are given either 35 mg of the drug, 15 mg, or a placebo. It is to determine if there is only one optimal dose or if you still can see benefits at other doses. They do have a rescue plan set in place where the minute you show signs of regression you are taken off of this study and placed back on the 45 mg. It seems silly, but it’s all part of the process and something I knew would happen when I signed up. But there is always a plan in place to ensure your health is first.

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Completely and utterly GONE

Now I only have to see my clinic team once a month which is more convenient. Still have to enter my poop diary every day so they are always getting updates about me.

But yeah. We are almost better! I properly celebrated by getting an ECG done, ate a burger and a soft pretzel, and took a nap. It was glorious. Today, not so much. 6 biopsies don’t feel the most pleasant once the drugs have worn off.

But guys I am so happy. This little pill has completely changed my life and given me more of a chance to live my life again. I had been so entrenched in this world of a flare up that I kind of forgot what it felt like to be better. That panicking for a washroom any time I was in a public setting was not normal. That always being in pain due to joint pain was not normal. That winding myself after a flight of stairs was not normal. That spending my mornings first thing by sitting in the shitter for 20-30 minutes was not normal. The anxiety and depression feels like it is truly lifting away and we are getting our feet on the ground. I even get to slowly wean off prednisone. SO NOT EXCITED– but it needs to be done. Luckily there are only 40 days left of school and then I am off of work for 2 months. We can do it.

It’s amazing that this could open so many doors for so many people. It is a new class of drugs that has so many possibilities and it is starting to spark new studies! It is so so so so so exciting. And it would not be possible without hard work and people who believe in this cause. That is why this year I am walking in the annual Crohns and Colitis Gutsy Walk come June 2nd. The organization helps raise funds for this specific reason (and others of course). They help fund these studies so that they can even be possible until a biochemical/pharmaceutical company like Abbvie picks it up. Last year I just volunteered at the walk because it allowed me close access to the washrooms, but this year it has a bit more of a personal meaning to me. It is part of the reason I am where I am in this very moment. It has given me a chance at life in a better way again. SO if you live in Canada, check out where your walk will be happening at Gutsy Walk OR you can always help me and my team by donating at this link: Gutsy Walk- Team Super Poopers

But that is my quick update! I am off to watch TV until I fall asleep and wrap myself in a heating pad to hopefully numb the dull cramps I still feel.

Love you all and thank you for sticking by me as well through this journey.

Bee.

 

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