Let me tell you something. I went to start writing this entry a little while ago. I found I had too many conflicting thoughts in my head and things were just not coming out just right. I grabbed my cup of coffee and sat back down after a quick pace around the house, and after a few minutes, my head cleared. I found a remedy to the craziness that can be my thought process. A dog on my lap, a cup of coffee, and the crickets outside.
So I went to my G.I. today, the appointment over all went smoothly. We discussed my (still-there) symptoms and my current doses of my meds. I guess Dr. C is concerned that because my body built up the anti-bodies against the Humira so quickly that the same might happen with Remicade. We discussed my options for the future.
A. Surgery (Fistula related – and most likely have immediate relief)
B. Continue Remicade un-aided (and risk building an immunity towards the drug and having surgery anyway)
C. Continue Remicade and add in 6mp to suppress my immune system (more?) and hopefully keep the Remi working long-term (and increase my risk of lymphoma and other serious side-effects down the line)
To say I was not expecting that conversation is putting it extremely lightly. However, I was mature (which is highly unlike me when it comes to medical issues, especially the quality of life vs quantity of life issues) and I talked to him about it and got all of the information I could (most of which I’ve had for months).
I’ve always said that I want to live my life no matter what. I do not want Crohns to dictate my life and what I want to do. I’ve also been trying to avoid surgery as well, to me that is last resort, I know the success ratings, but at this point in my life, I don’t want it. I’m 25 and I am terrified I’ll set off a chain reaction of surgeries and med issues.. This is my personal choice (so don’t argue) and I’m going to stick by it until it’s completely needed.
So surgery is out, unless something serious happens.
So Dr. C goes on to say in that case, we need to find a way to close this fistula asap. We also need to find a way to prevent my body from turning against the Remicade. Which is where the 6mp comes in.
We discussed the side-effects of that drug, which the one that I am mostly concerned about (who needs a pancreas, fuck-a-pancreas) is the lymphoma risk, which is also a risk I’m taking with Remicade. Dr. C informed me that it will up that risk being on both drugs, especially on the 6mp. Yet again it comes down to making my symptoms go away so I can lead a some what normal life, and it seems like adding the 6mp will make that happen, as well as allow me to get off the prednisone the rest of the way (I’ve already begun weaning myself off). The day-to-day side effects are much more bearable than the steroids I have heard, which is important to me as well. Plus, obviously the pred isn’t helping me much anyway.
So I chose to start 6mp. I got my prescriptions, my instructions for bloodwork/follow-ups/generally annoying doctor crap and headed out. I was supposed to start it today, but unfortunately could not make it to the pharmacy. So tomorrow will be day 1.
You know, I know that a lot of Crohns patients end up on 6mp and are okay with it, but I’m just wierded out. I’ve been anti-meds for so long, that I had a hard time just taking all of those Pentasa pills. I’m sure some of you remember the blogs that came around when I started the Humira injections in March/April, I’m just not a fan of these hardcore drugs. So beginning Remicade earlier this week was rough on me mentally too, now adding 6mp?
To say I was overwhelmed and upset (at first) is putting it mildly. My thoughts were going insane. So on the way home, I put in my ear-buds (we were on the bike) and blasted my thoughts with some tunes and just worked on hashing everything out.
I’ve decided to stop worrying about the long-term effects of these drugs. They aren’t any more daunting or terrifying than completely uncontrolled Crohns disease is, at least not to me. I’m okay with starting yet another drug (I don’t particularly like it, but hey) and I’ve decided to try and make the best of things no matter what happens with this disease. All I can do is smile and be happy, the end result is in the future, what matters is the now.
So I hope the 6mp helps the Remi. I hope this all works out and the fistula heals (after god, uhh, since last fall?) and my body can get a break.
On another note, I just want to say I feel so incredibly grateful for the people I have in my life. My doctor who has dealt with my shenanigans for 3 years now despite me doing my best to ignore this disease. My parents for helping me out and letting me vent. My online friends and support network (thank you twitter, you’re not just a slut anymore) as well have saved my sanity more than a couple times. My friends who send me random texts when my mood seems a little down or “just to check up” on me or see if I need anything. To the boyfriend who hasn’t batted an eye about dating someone with a Chonic illness. The boy sat through my infusion and came to my GI appt with me. I can’t say what he thinks inside, but so far just knowing that I have a hand to hold if I need it so so reassuring.
A lot of you know I’ve been struggling mentally with certain aspects of being sick, and I just want to say thank you all for everything. Every-thing.
Well, except for the picture of someones ass I got. Granted, it made me smile (and choke on my soda), but no one should write “No worries” in sharpie on their ass. That’s just strange. Keep your fetishes to yourself. :)