Clinical Trial Series · Treatments

Clinical Trial Series: Baseline

Hello dear readers,

We made it! We survived day 1.

Today was just overall a busy day. I had decided since I had to take a day off work to book all my appointments today. This resulted in the clinical trial, my gyno appointment, and a practicum interview being all done in one go. It was a whirl wind of a day needless to say.

My interview went pretty well. But does anyone have that weird side effect with Prednisone, where if they don’t eat enough with it you almost get like a caffeine high? It doesn’t last long, but I get this weird jittery feeling and then crash with a really bad head ache. I just feel jumpy and jittery like I just downed 6 cups of espresso. It made it really hard to concentrate during the interview and it kind of felt like I was going from topic to topic. I have no idea if I made any sense, but in my mind I did…. watch it be that I just casually looked more like a patient who needs support rather than someone who interning to offer support. Hopefully I looked sane.

But now for the real reason you are reading this post.

The trial.

2_17_2020

It was a piece of cake. Did a poop sample this morning, which is ALWAYS the best time ever. Nothing like starting your morning by shitting on a plate and then scooping this into small jar half asleep. I’m suuuuuper stoked for my follow up because I need to provide not one, but 6 samples of my poop. Yup.

After that we got right into checking my vitals, weight (back to 94.5 lbs guys -woot-), blood work (I think they took like 6 or 7 vials), a physical exam, a urine test, and then finally questionnaires.

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Poop sample kit and pills

Guys the questionnaires are awesome. I mean there were a lot of questions, but they were all so relevant. I was so impressed. They looked beyond symptomology. I mean they asked the standard questions like:

  • How many times you poop
  • Was there blood? How often?
  • Was there mucus? How often
  • Joint pain? How severe? How often?
  • Fatigue? How bad? How much energy do you have?
  • How hard is it to do day to day tasks? Getting dressed, bathing, sleeping, going out, exercise, work, etc.
  • A lot of questions about pain and walking
  • Bloating? How often?
  • Poop consistency?
  • Gas? How bad?
  • Abdominal pain? How bad?
  • Do you get sick more often than people you know?

But then they also look at your mental health and how the disease impacts your emotional and social life:

  • Do you experience depression? (there were 5 questions or more exploring depression)
  • How happy are you?
  • Do you feel frustrated because of your health?
  • Do you experience episode of hopelessness?
  • Do you worry about your disease? (there were 5 or more questions exploring worry and even anxiety)
  • Do you worry about public accidents?
  • Do you worry about going out and not having a washroom near by? (uh always, I will not go somewhere if there is no washroom. End of story)
  • Do you feel embarrassed? (If anything, this disease has taken away that buffer. I talk about poop far too often for the common folk and have no shame in the sounds my bowels make now a days. I only get embarrassed when I am smelly gasy.)
  • How would you rate how the disease has impacted you emotional well-being?
  • Do you avoid going out? Have you missed opportunities to go out with friends or family?
  • Do you worry about surgery?
  • Do you feel like you will not get better?
  • How many hours of work have you missed as a result of the disease (they get into specifics)?

All these questions were on a likert scale. I mean, yes! Thank you. THESE are the type of questions we should be asking. This is beyond just physical health. I have always made it very clear that this disease impacts you physically, emotionally, and mentally. There are links between depression and IBDs. We may not know the exact nature of the relationship, but something is happening. A lot of doctors talk about not wanting to list it as a symptom of the illness because they are afraid that is will “prime” patients to believe they have it. But if it’s going to happen, it’s going to happen. And it is quite a common side effect. I remember writing about my depression and the phone call I made to my nurse practitioner about it and her response was “oh yeah, it’s a common side effect. We recommend therapy”. 

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What the actual pills look like

Like girl, what? How is it a common side effect and you don’t feel the need to tell me during our side effect debrief? Here I was thinking I was going out of my mind or that I was weak. But it’s normal. Thanks tips.

But once I finished up with my questionnaires, I was given my pill bottle and left to carry on. I take one pill a day. My pills are either 45mg of the drug or a placebo. Apparently you know quite quickly which one you got. So we will see with time. Either nothing changes or something does! After 8 weeks, if I got the placebo, then I’ll be put on the drug and monitored for another 8 weeks.

Hopefully we got the drug.

Because in another news my bloating has been super active lately. I think its because I was on a two week vacation from work, out of my routine, changing when I ate, when I took my meds, how long I slept, when I went to bed, etc. I should really try to keep to my routine as much as possible. I looked like I was pregnant one evening, and it was just solid to the touch. The cramps were so bad too.

But now we give it two weeks, then I come back with my bag of poop and do it all over again.

So here is a start to a new chapter friends!

With love,

Bee.

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