I was too excited not to update you about today even though I feel like ABSOLUTE trash.
Today was the final week of phase 1 where we found out if I was on the drug, how my bowels were looking, and what the next step would be.
First off, prep fucking sucks. I have done so many colonoscopies and hint: THEY NEVER GET EASIER. The migraine I got was so bad it woke me up every hour and the starvation….. I am a hangry person naturally, so prep days are just a miserable time. Some hints for people who have upcoming preps:
- buy pedialyte to help keeps those electrolytes up
- buy baby wipes- your poor bum will thank you
- plan on doing nothing the minute you begin. Some people say it takes them 2-4 hours for the laxatives to kick in, for me it took less than 45 minutes.
I woke up this morning feeling groggy, my head numb from the pain of my migraine (which BTW you can’t take medication for it 24 hours before the procedure-convenient how that worked out), and my ass on fire because I had wiped it to the point of bleeding. Needless to say I was not in the mood and was at the point of being indifferent to whatever the results were.
The colonoscopy was the same as always. For the trial I had to complete:
- another questionnaire
- take some blood samples (there were like 9 vials)
- pee sample
- stool samples (there was another 6…..)
- ECG had to be done before the exam
- physical exam was to be completed by my doctor
Everything checked out so we rolled on in and I was knocked out for the rest (thank god). When I woke up I was still groggy, nauseous, and gasy but something felt different this time. I didn’t feel like I was in as much physical pain as I normally am when I wake up from a scope. I took this as a little sign of hope.
Sure enough when my doctor came to meet me I was finally greeted with good news. My bowels were the best he had seen in the last 2 years with me. THE BEST.
My Mayo score was originally an 8/9 8 weeks ago and in just 8 weeks we were able to get it down to a 4.3/9! In fact, 70% of my colon showed no disease activity period. There were so many 0’s in spots where there were once 5’s and 6’s! I wanted to cry. Ulcers in my upper colon had healed and inflammation was completely gone.
The other 30% is a different story but it is still improving. We brought it down from severe to mild-moderate in most places. The inflammation does start around my sigmoid and goes down to my rectum. Because a lot of my inflammation is near my rectum I do experience bleeding everyday still, even though it’s usually just once a day. There are even spots that still have spontaneous bleeding, meaning that even just the gentlest touch will cause it to bleed. They said the scope brushed past one spot and she bled immediately. But there are no new ulcers! Good sign.
After reviewing my results, I was in fact on the drug (no surprise). I am considered non-responsive for the trial’s first phase due to my bleeding. In order to be considered responsive, all my scores had to have gone down 1-2 marks and my bleeding went from a 2/3 to a 1.3/3 (so just barely). But this didn’t mean I wasn’t eligible to continue with the drug, it just meant that my body probably needs more time before we see effectiveness in all aspects. So as a result, I will remain in phase 1 and continue to see the research clinic every 2 weeks for the next 8 weeks again and then complete another colonoscopy in 8 weeks to see where we are at then!
I am more than okay with this because it means we will get to closely monitor my progress, which I am thankful for because its how we caught that I was passing a kidney stone….Yeah, a perk of being on prednisone for so long is that you can get kidney stones if you didn’t know! So I will be drinking a lot more water from now on because that shit was painful. I literally cried to my boyfriend that I didn’t want to give birth if the pain was even remotely similar (according to doctors and nurses, it is sometimes more painful than childbirth).
Speaking of prednisone, we will be hanging out together a little longer. Another 8 weeks while I remain in phase 1, just so that we are sure it is the drug at work and not prednisone. But after this I should be able to start tapering off thank god.
BUT I wanted to share with you guys the good news. This is literally the closest I have been to getting better and I am so so so so thankful. Patience is virtue. I can definitely attest that my quality of life has been getting better and I only hope it continues going up from here (with a few hiccups here and there because I do have to remain somewhat realistic).
But I am off to curl in a ball and try to recuperate for work tomorrow.