It seems like every time I say I appreciate life, or that I don’t take it for granted, something happens that makes me realize the things I don’t appreciate. It seems like no matter how hard you try, there is something you take for granted. Not that I’m discounting the thousands of millions of people who try their best to appreciate every aspect of life, I’m just saying, there is always something you take for granted.
So I’m pondering something new today. Yesterday I had a reallly hard time with my Crohns. The stomach pain was so bad it was surreal. At one point in the morning, Bryan had to come over, pick me up off the floor and put me in bed. I would be lying if I claimed to remember all of it. Yesterday, I finally hit the breaking point and called my doctor. It took him a while to get back to me, but he did.
The first thing he said was “I’m so sorry you have to go through this, but I have to ask this question. What exactly do you want out of treatment? ” I told him, “I just want my life back, I can’t do this anymore”. His response to that was “Are you finally ready to try some heavier drugs?” What he was referring to is my statements I made in the hospital back in 2008. I swore up and down that I would NEVER take steroids. I refused to ever take the drugs designed to suppress my immune system so I could heal. The side effects? Horrible.
Since 2008, I have been on steroids for a year. I have taken one more round than what my doctor considers safe. It’s time for me to consider taking the drugs I’m afraid of taking. It’s time to consider the pros and the cons. The quality of life vs the potential downfalls, the risks and side effects, the length of my life and whether or not these medicines will impact that.
I am really anti-medicine. I hated the fact that I have to take 4,000 mg of Pentasa to survive, not because of the side effects, but because it surely didn’t belong in my body. When I was put on Wellbutrin and Klonopin, I was irate and boycotted taking them for months. The steroids? The only reason I agreed is because I watched 20lbs fall off of me, watched the size 1’s get loose. I couldn’t wean off of them fast enough. When my body relapsed I dreaded taking them again. I would watch my complexion get “dirty”, my legs swell, my moods fluctuate, but my crohns recede. So naturally these harder drugs, Remicade, Humira, Imuran, 6mp, and prednisone (stronger steroids than what I take) were on my shit list.
Let me say this before I describe this new medication. I trust my G.I. doctor. I do. He was the only one in a year and a half of dying that listened to me. That didn’t dismiss me as a Celiac, Anorexic, Drug Addict or Munchhausen patient. He diagnosed me and has gone far out of his way to argue his points, put me on the correct medicine, and break protocol by treating purely over the phone. I have spoken to other doctors, but I trust my doctor’s opinion that this is the logical next step.
So this new drug (to me) is 6mp. It’s designed to suppress my immune system, so the inflammation goes down in my intestines. It’s commonly used in the treatment of Crohns, sometimes RA (in much lower doses), in organ transplant patients, and in Leukemia patients. It is technically an oral chemotherapy drug. The risks (and possible side effects) of taking this drug are:
-hair loss (the common consensus is thinning, not losing patches)
-reddening or rashy spots on the skin
-Swelling of extremities
-the innability to fight of infections (remember, kills your immune system)
-Bone Marrow Toxicity (you are monitored for this)
-Neutropenia (or a similar condition) (you are monitored for this as well)
– Decreased Liver Function (you are also monitored for this)
-The development of certain cancers.
-Diarrhea, vomiting (which are said to decrease in the months after you first start taking this drug)
– The possibility of infertility
-If pregnant, miscarriage (doctor’s highly recommend birth control)
-These “side effects can appear months, even years after the medication has been stopped”
Pretty daunting huh? Now to be fair, I do have to say that with the research I’ve done, and patients I have spoken to, 6mp does seem to put Crohns patients into remission and can be used for years. Not every patient has every side effect, and even though they were far between, I did talk to a handful of patients that had no side effects at all (in the short term).
Now to give you an idea of what I deal with now:
-Joint pain and swelling (well not sure if this is from Crohns or something else atm)
-Stomach pain on a 1-10 scale being 8-10
-Weight loss (my lowest being 113, 2 weeks ago I was 130. Now I am back down to 122).
-malnutrition (vitamin deficiency)
-Depression (by proxy)
So it’s coming down to the pro’s and cons. This drug has been proven to alleviate Crohns symptoms, and put you in remission (in 2/3s of the cases). It gives you the opportunity to live a near normal life (minus the weekly, monthly, tri monthly blood tests) which is nearly impossible with out medication. But it puts you at risk for several things down the line, and *can* have nasty short term side effects.
Quality of life vs. Length of life
I wish my only problem was deciding what to wear on a Saturday night.
Instead I have to figure out this choice, how to pay for it (as well as my mortgage… yeah that’s late) and how it’ll impact my daughter in the long run.
Where’s my coffee?