Where are we now?

Hello dear friends,

I seem to be following this pattern of a once a month update…. maybe this can be my new years resolution. Become better at updating my blog.

But I am here to say, I have survived another scope. Please, please, hold your round of applause. I know it’s a miracle.

No actually. Scope preparation may become the death of me.

But let’s rewind.

Back at the beginning of the month I had my one month follow up with my specialist. We were trying to play that really fun game- what is causing your symptoms? In September and part of October we chose Endometriosis for 500, hoping that my flare up with that was also just making my UC a bitch to deal with.

–Signal buzzer- we were wrong! Turns out it was a trick question and was actually both because my UC was in fact getting worse. At first I was in this optimistic denial. I had told him that things were okay. I was still only going 4-5 times a day so that was good, right? But as we started talking about other symptoms and as I watched concern cross his face, I then started better listening to my own words. Hmmm was this normal?

• Still bleeding every day at least once a day
• inconsistency between diarrhea and solid poops
• there were 4 separate occasions where I was overcome by this overwhelming sensation to have to puke and had intense abdominal pain. Less than 5 minutes later I would run to the washroom and I would pass a lot of bright red blood.
• Was starting to get more tired
• Joint pain was coming back- but differently. I would wake up feeling like I did an intense workout and then as the day went on and I moved around I would feel better (potentially early signs of arthritis BTW)
• Hair loss was getting out of control again
• I was barely making it to week 3 before Remicade and we are doing it every 4 weeks. The norm is 6-8 weeks.
• I was getting nauseous and losing my appetite
• I lost weight. Like a lot. At the time I was down to 90 lbs. Now I am at 87.9 lbs (that .9 makes me feel just a little better so leave me be).

Okay…. so there was something going on and it clearly didn’t look good. But how did I miss it all? Because I got too hyperfocused on my poop count, forgetting that poop is like maybe 1/4 or 1/6 even of the disease. There are so many other things that become effected due to the illness, and I was ignoring it.

So we booked a scope. At the time the scope would help us determine whether or not I stay on Remicade and just amp up my dose or we scratch it entirely and move on to clinical trials of Xeljanz. Either way I was showing signs of something going wrong, so I knew to not expect good news.

Fast forward to yesterday where I had the day from hell. But I feel like I say that every time I have to do a prep. Laxatives FUCKING suck. And this girl had to take 3 at the same time right in the morning. But even before I started the prep my body was all off. I woke up at 5:30 am to run to the washroom 4 times- each time passing an obscene amount. This resulted in me having the shakes and just feeling so nauseous. Perfect way to start prep. So I took the day off because there was no way I was working with kids with the highest potential of shitting myself. It was a damn good thing I did. I spent most of my day in bed or in the washroom.

Now before people get all judgey asking “well why wouldn’t you take the day off work” it was BECAUSE they’re supposed to be slow release laxatives. They are supposed to take 6-8 hours, so I figured I would be golden for most of the day. LOL. They took all of 2 hours to kick in- and by kicking in I mean waking up from my nap with an intense pain in my stomach and running to the washroom praying something would move to just take the pain away. Overall I went to the washroom 16 times, puked 3 times, cried 4 times, and napped 3 times. I also got a raging head ache from dehydration BUT couldn’t hydrate myself because I would puke it up. I was done with life.

Then I had to wake up at 4:30 in the morning to give myself the enema of hell. I would like to know WHO came up with these preps? Did they even have UC or Crohns? I’m sure for a healthy person it wouldn’t be the end of the world. But these enemas are a sodium phosphate solution. SODIUM. As in salt. They want you to shove this bottle of salt up your ass and squeeze not one BUT TWO 130ml bottles of it over your poor ulcers and sores. You are literally pouring salt into a wound. It has honestly been traumatizing for me. I never finish one bottle, let alone two and I am actually terrified. My body knew. I was shaking before I even started it because my body was ready to wither in pain. I stopped after I started passing just pure blood.

Scope was great because I was put under. Don’t remember a thing. And my results were not the worst. Basically it’s still affecting 30 cm of my colon (so just under 25%. Fun fact did you know your colon is 5 ft long, or 1.5 meters, or 150 cm). It has shown that it is spreading a little, so we are catching it at a good time. But we are down to moderate inflammation instead of severe which is an improvement and there are patches that have healed (horray!). But Remicade has ran its course. We have changes since my last scope in July and that was enough evidence to show that I have peaked at my Remicade levels. So clinical trials it is. But my body is in a weaker state than we would like so I will not be talking to my doctor about the clinical trials for another 2 weeks. In the mean time I will be back on prednisone, which I am okay with. I for one, need to gain weight, and two, just want to feel better again and I tend to feel better on it. It will also get me to a better place when I start clinical trials, which I think will really help me as I transition. Because my body is already mad that we haven’t had Remicade.

So here we are friends. New treatment and new directions.

Hopefully it works.

I will have my chubby cheeks just in time for Christmas, which seems to be a new tradition since last year I had them as well right around this time!

Hope all is well with everyone else.

With love,

Bee