It has been awhile, no? Yes, yes it has. I know I promised an update a while ago, but life has been so up and down and my fatigue is unreal lately. After a full day of work and hammering some school stuff, I have 0 energy.
But where should I begin?
I have had 6 IV’s of Remicade now (the therapeutic dose) so I did do a check in with my doctor. I am about 70% better, but still am struggling to get into remission. I am going about 4-5 times a day on a good day, still see blood 2-3 times a week (although I feel like this has increased these last few weeks), and methotrexate has recently started to give me lovely side effects….
I had been on it for months and felt completely fine, but these last almost 2 months it has been kicking my ass. 6-7 hours exactly after taking my injection I get really sick. I get this overwhelming sensation of nausea, have puked, and get this crazy bout of diarrhea (which seems pretty unhelpful for UC if you ask me). Tuesdays have become a dreaded day thanks to these injections. I pop anti-nauseating medication like candy lately (prescribed because Gravol does absolutely nothing).
Remicade is okay. I get super tired immediately after taking it so I made the point to not have plans during Remicade days and do it in the afternoon so that I do not have to return to work. I just go home, turn on Law & Order and nap.
In addition to all of this I have been trying really hard to see if vitamins and other healthy supplements can help me out. 1 thing I have added is Benefibre. It was recommended by my doctor after I told him I refused to stick with metamucil as it congeals if not consumed right away and I don’t even eat jell-o. I hate jell-o. But this I could deal with. I just stir it into my morning tea and it doesn’t taste any different.
And it works! I mean you have to suffer for a day or two because I think your body is just so unsure with how to deal with it. I was extremely gasy and bloated and questioned my existence and why I would do this to myself. But after I got through that hump, I felt better. I have not had diarrhea in so long (except on methotrexate days), I am pooping a lot more at once and running to the washroom less, and it does hurt a bit less to come out! In addition to this I am taking a muti-vitamin, vitamin D, folic acid (for methotrexate, except on the days you take it), and I have recently added Ghee into my diet too. I am still unsure if the Ghee has added any benefits but it is still very recent. I can definitely make a separate post explaining why I have chosen to add all of this.
But what now?
Well we need my body to figure its shit out. I feel like I am constantly running on empty, regardless of how much sleep I get and have even scaled back my social life to try and slow things down. I feel like fatigue is curb stomping me. Oh you’re 70% better? Let me make you feel like you are not better at all.
I do have a scope July 3rd to visually see how things are so we do not have a repeat of last summer. It will also give us the indication of staying on Remicade or going onto clinical trials in September. It is not a colonoscopy (hallelujah!) but rather a sigmoidoscopy, which is supposed to be less invasive and the prep is supposed to be better. I can write a review to compare the two once I have obviously gone through it. My hopes are high because colonoscopy prep is actually the worst experience I have gone through in my UC journey.
Once I have my scope, we sit down and decide what my next steps are. I am a little nervous because July 9th I head out of town into a different city all by myself to attend 3 weeks of in class school for my masters program. I have never been alone. Ever. Not even in travels. So I am trying to keep my stress to a minimum and hope it all works out. Luckily one of my classmates in my group actually has Crohns (I mean not so lucky for her), so I at least know someone who understands to an extent what I am going through.
But last summer was brutal and I have been so lucky to have my family, boyfriend, and friends to lean on for support. Even a few nights ago, when I physically became ill after having a poop attack, my parents immediately came to check on me and helped nurse me to at least be comfortable enough to try and sleep. I’m gunna have to learn how to be a big girl and just get it done myself.
My other worry is that my test will show that it is not working at a pace my doctor is comfortable with and I will have to go on another treatment plan until clinical trials start. We are trying really hard to stay away from Prednisone (although a part of me misses it because it was the closest to normal I have ever felt in over a year when I was on 40mg). Cortiment did not feel like it did a whole lot and the enemas….. sweet lord I would never wish a liquid enema onto my worst enemy. It is so uncomfortable.
And did I mention that I will be sharing a room with 3 other people? Luckily there are 2 washrooms, but I feel like my roomies will have to know sooner or later what’s going on so they can understand why I am in the washroom for a solid 15 minutes.
I just want to be better. I follow all these people, listen to podcasts, and most people seem to be getting it together and getting their life back on track. When do I catch my break? I’ve decided at the end of August to leave my current job because I just cannot do it all. I cannot work full time at different hours, complete school work, figure out my UC (potentially starting another new treatment), and still feel sane. It is becoming much harder to wake up in the morning and get out of bed.
Really exciting news is that this year I volunteered at the #Gutsywalk2018 which raises money and proceeds towards Crohns and Colitis Canada. There was no way I could walk that thing even though they promised porti-potties along the trails. If I can avoid consistently using them, I will. So I just got to sit down and help people with registration and giving out shirts. My lovely friends and family came to support and even do the walk themselves. I was so touched. It was also just so moving to see so many people there and know that across Canada a lot of people were walking for IBD on the same day. BUT the amazing news is on this day alone (and the fundraising teams did beforehand) we were able to raise 3 MILLION FREAKING DOLLARS. And this is not the total amount because they are accepting donations online until July 5th! So proud! And over 80% of donations goes towards research and the clinical trials, allowing us patients to be a part of them for no cost or very little cost. Yay Canada!! (and other places if you donated!)
So here is to some new upcoming adventures and hopefully some good news. I am also going to remind myself to share with you my experience last week teaching my anger management course and how sharing our journeys can touch people in ways we could never imagine.