Hello dear friends,
I hope everyone’s holiday season has been well so far. If you are like me, then you are probably thinking the same thing “Thank god we survived”.
Holidays are so magical and I love Christmas with every fibre in my being, but it is freaking exhausting. Boxing day was spent in a haze of brain fog, exhaustion head aches, and being unable to sleep because I was so over tired. I may have over done it and the weird thing is I tried to pace myself! I thought I did so well, but apparently not.
But it was beautiful nonetheless. Thanks to being back on prednisone for the next little bit, I did actually get to enjoy some holiday excursions with little to no problems. I have gone to as many outdoor light events, saw Boney M with my mom, best friend, and her mom, attended Christmas parties and fundraisers, got all my shopping done early, and had enough energy to bake!
Listing it off….I see maybe it was a little too much, but it was worth it. And working for the school system does have its perks as I don’t have to go back to work now until Jan. 7th.
The new year is quickly approaching too! I can’t believe another year has flown by. But I will leave that self-reflection for a separate post.
For now I will leave you with this.
I am doing well. As well as one can be. We are off of methotrexate officially, which I guess is good. Less hair loss already and less nausea. Maybe my hair will go back to normal and not be this weird curly underneath and straight on top thing its got going on right now. Only 4-5 bowels movements a day people!! Still holding steady, although there is still blood. I did get my official start date for my clinical trial- Jan. 8th.
The drug is called Upadacitinib (I couldn’t even begin to tell you how to say it- so don’t ask). We were originally going to try Xeljanz, but after reviewing my case and looking at where I’m at now this was the better option. Both drugs work in a very similar fashion by targeting your JAK inhibitors, but Xeljanz targets two JAKs and Upadacitinib targets only 1. Xeljanz would have taken longer to start on because I would have to be off all medications, whereas Upadacitinib gave me the option to at least stay on prednisone while we made the switch. This was important because between my colonoscopies on Nov. 20th and Dec. 19th we already saw some new inflammation coming up. In addition, Xeljanz has been shown to cause cases of shingles, especially to patients who are severely immunocompromised. Given the cocktail of drugs I have been on, it’s safe to say I am most likely in that radar and have a high potential of getting shingles- which really is something I am not in the mood to start my new year off with.
Upadacitinib is currently on its third clinical phase for trials, meaning it has been already extensively studied and (good news!) been found to be pretty effective for patients who have moderate to severe ulcerative colitis or crohns and have rejected biologics and other medications. My doctor is running his own clinical trials, and out of the 16 patients he currently has all of them are either showing signs of remission or are in remission! Before people get their panties in a knot, yes I know he gets paid to run these trials, and no this did not influence my decision. He provided information about both options and we took time to look at my case. He even provided me the option of going home and taking time to look into it, but I wanted to get started and it made the most sense. In addition, IF I wanted surgery and told him- I can’t do it anymore, I am done- he would do it. We have talked about it all, but at the end of the day it is my choice and he has always respected that.
The drug is being funded by Abbvie, the same biotech company who created Humira. It’s actually quite amazing the work and findings they have already had. These two drugs could open a lot more options for people with IBD, which is always a good thing. Because it is a clinical trial it is extensively and vigorously monitored, which makes me feel better about my choice. I have to do a lot of blood work, physical examinations, tests, and so forth and also lots of colonoscopies to physically see how the drug is effecting my body. It sounds kind of meh, but in my mind it’s a good thing. There is no guessing based on symptoms- we will get to see how things look. In addition to all this, I have consented for them to also study my genetics and biology. The hope is that one day they may be able to better understand why there are patients like myself who are so resistant to drugs. I may not personally reap the benefits, but it brought me comfort knowing that maybe some day someone will and it will make their journey just a little easier.
I know a lot of people who have followed my journey have asked me why I haven’t just bit the bullet and done the surgery. I know someday it very well could come to that and I may just be pushing the inevitable, but it’s part of who I am. I am a person who needs to exhaust all her options before I just settle. I need to know that I have tried everything and gave it my all. I don’t want to jump on surgery and then hear about things like these clinical trials and sit there second guessing if it was the right choice- and I would do this. I would ruminate. Also I have other health conditions that make surgery at this point in my life not the best option. But I am blessed. I am blessed to have a doctor and a team behind me who really take the time to listen to my concerns and allow me to voice my opinions. Who help me research and understand my options so I can make an educated decision.
There is no cure for ulcerative colitis or crohns. Surgery isn’t always a sure thing, more specifically for those with Crohns. I understand for some people it becomes an absolute necessity due to complications of the disease. I also understand that between 23-45% of patients with UC and 75% of patients with Crohns will one day require surgery. But I am still hanging in there and doing okay. We haven’t had to cross that bridge yet, so why jump the gun? IBDs are a very individualized disease from what I have experienced, so what works for some doesn’t always work for everyone. All I recommend is do your research, know who you are and what is going to best fit your life right now. For me, that is still exploring my options.
Plus back in July I got my pictures from that colonoscopy and I did show signs of healing! Unfortunately Remicade ran it course after that, but the point being is that there was a response and I did get better. I went from 100% of my colon being affected to only 25%. Thats huge! So I want to try and see what we can do. Plus I have friends who have gotten the surgery and poop more times a day than I am now…. almost seems counterintuitive. They say the norm with surgery is 6-8 times a day months later once your body has strengthened. I mean obviously pooping isn’t the only thing your body goes through. They aren’t bleeding, which is important. And they have reduced their chances of cancer, which is also important.
Anyways the point is I am excited about this new adventure. I am excited to see if this is a viable option and to report back to you guys live about my journey on this medication. Again, this could open so many doors for so many people who are like me. It’s absolutely exciting to know we are making some strides.
So happy holidays friends and prepare for lots of updates come this new year!