Last week my GI called and said she had talked with both my rheumatologist and my surgeon after my January appointments to get everyone on the same page (I think that's pretty awesome, something that really hasn't happened in my journey, especially since all three are at different hospitals.) She said that we were at yet another crossroads and urged me to do some research on some medications so we could have an educated and in-depth conversation during my appt this past Tuesday.
Again, I totally respect and appreciate that. Not many doctors take the time to do call the week before an appointment and give their patient time to research before the appt to make things more productive. Thankfully, I was already pretty familair with the drug class she was asking me to research -- anti-TNF blockers, namely Humira and Cimzia; and an immunomodulator, Methotrexate.
These are the next line of defense for both my GI symptoms and my arthritis ones too, that's what we are hoping anyway. But with any medications or treatments for that matter they come with risks.
I'll spare you all the details, feel free to google away if you are interested. But the main issue for me in the short-term is the high risk of infection. Both treatments suppress ones immune system in order to suppress the part that is attacking itself. But with the good, also comes the not so good. The risk of catching every little bug out there heightens immensely, and what is an annoying cold for the "healthy" person can quickly turn into something more sinister and serious for the immuno-suppressed. And that's scary.
I don't want to live in a bubble, I won't live in a bubble. So if this is the decision we make then I will have to take very careful measures to avoid contact with as many germs as possible. In other words, hand wash, hand sanitize, hand wash, hand sanitize, repeat, repeat, repeat. And also wiping down shopping carts and avoiding sick germs when I can. It's just more due diligence, a heightened version of what I already do. Plus I will need to always be mindful of my rest and as my doctor very sternly warned, if I feel "off" at all that I do NOT wait to go into my doctor, Urgent Care or ER. I can't not be dumb or stubborn or naive.
But the benefits can be profound as well, it could help relieve the inflammation that is raging throughout my body most profoundly in my GI tract and joints. I could have a better day-to-day quality of life and be in less pain, plus give my insides a much needed rest.
As it turns out, my GI was able to go back in my records a few years ago and I had an updated Prometheus test (check it out) one of the only tests thought to point at if a patient actually has Crohn's or Colitis. And while my marker for UC is off the charts, and that's probably why the docs have always leaned that way, I also have two markers for Crohn's too. So Crohn's Colitis, maybe. But does it really matter, no not really at this point.
And as my GI put it we are at the point for having to do something more than we are doing. That my disease case is very difficult. She was very matter of fact, not trying to sway me one way or the other but really impressing upon me where we are at this point.
I asked about another alternative therapy, she said the science was there but it was not studied enough and even if I ordered it online she wouldn't know how to administer or treat me if something went wrong. She seemed hopeful that if the research continued that someday it would be an option for people.
I felt informed and like I was really in control of the decision. Thanks to my buddy A for coming with me as an extra set of ears since hubby was on a business trip (and to her mom for watching the littles while we were there!)
I think that the hardest part of this decision is the mental one. We did not think we would ever be back here. You see I did take these drugs before my colectomy, the point then was to try and save my colon, but when they didn't it was to be all better once I had surgery. And well, here we are.
It's almost like a defeat, but then again not really. It just for some reason feels like it. I hear the sadness in both my hub's and my mom's voice and it breaks my heart too. We all know what I have to do, it's just a matter of wrapping our brain around it all. I have to try everything I can to live the best life I have available to me in my broken body.
A girls got to do what a girls got to do, right?!
And it could quite possibly make me feel better than I have in a long time and then dealing with the side effects (and the weekly self-injections) could be totally worth it.
I know lots of people who take these meds and live full lives out of the bubble and they give me hope and support. And thank goodness for that.
These decisions are not how I ever pictured life at 32 and yet they really are my normal and that's ok. It's a long and windy road, but it's ours. So onward we go, we have a lot of thinking to do this weekend, again...