Appreciation. Comes with a bottle of Merlot.

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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
-Appetite Loss
-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
-Dizziness
-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:

-Diarrhea
-Nausea
-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)
-Insomnia
-Depression (by proxy)
-Fatigue
-Dizziness

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.

 

 

FML.

Where’s my coffee?

 

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4 thoughts on “Appreciation. Comes with a bottle of Merlot.

  1. Emily

    Hell. <— helpful response right? At this point I'd probably be drug off by men in white coats to a nicely padded cozy room. So obvioulsy I can't say what I'd do if I were you. But I can say that you are doing the right things… taking this slow, research, and the so on. I know with your history the Cancer and such is like a huge friggen road block… but you do have to look at the right now. I think. What is gong to give you quality of life… because in my opinion living a long life filled with deathly pain is worse than having a short yet happy life. Again, just my opinion, and I definatly have not been in your shoes… I mean just when I think about it, I'd rather give Gabe and Sophie a happy me for a little time, than years of watching me suffer. But then again that's assuming I'd get hit with the threating side affets. Grrrrr, I dunno… I's gonna shud up now. Lubs ya hun!

  2. JenN-Moo

    It’s such a difficult decision, I can’t imagine having to make it. I think I agree with Em at this time, but I might disagree if I were living it. We lubs ya babe!

  3. Melinda Quantrell

    WOW! We have more in common then I thought. If you get a chance read my note on Facebook about my Interstitial Cystitis and you will understand. IC is a painful bladder condition that at times has required me to be on a extensive regime of pain meds, antibiotics, anti inflammatory, anti-depressants and etc etc etc…you name it, I tried it. Even had my bladder stretched….and yes it hurt like a motherf****! But after all that, I only got worse and nearly died because the DR rxed me to high of a dose on a pain patch…again please read the FB note, this is just a small overview. So here comes the part that I think will help you. I had a friend of mine suggest trying alternative medicine, natural medicine. Herbal remedies. At first, I thought she was CRAZY…she even took me to a guy in IN that did some crazy muscle testing stuff and had a list of herbs I needed to take. I asked my Uro what he thought of the herbal route, he told me it was a waste of time and money. Well, needless to say, after he nearly killed me with the pain patch incident, I decided not to listen to him any longer. I mean, he was a GREAT doc, just like you say yours is, but with your condition and mine as well, there is no cure and what works for one person, does not work for another. So the Dr ends up at a lose. It has been over a year now, and I have not been on any RX meds…not even a pain pill. And let me tell you IC used to feel like I had a million paper cuts in my bladder and someone decided to pour acid on them…so bad I was granted disability for my condition. Now, it is VERY mild. I can honestly say the herbs have truly helped me. There is a whole theory on why ones body acts the way it does. If your bladder hurts, it’s bc something else is off in your body causing your bladder to hurt….I learned that the meds he had me on, while are a normal treatment for IC, were actually making my IC and pain FAR worse. RX meds treat one problem but create may more in your body, as you can see from the side effects you listed. I don’t know where you live, but I know there is a health food store in Libertyville, I would start there. I regularly go to my local health food/natural medicine store. The women there got me on the regime I am on now and it truly has helped. I can eat and drink SO many foods I could not before. I did a little research on your condition, and I know Fish Oil and Probotics will REALLY help. if you have any questions or want to know more, message me. Good luck, i know how horrible it is to have a condition that affects your quality of life that badly!

  4. WOW, I AM SO SORRY THAT YOU HAVE TO ENDURE THIS! I wish I had some magic or could twitch my nose….but I’m always wishing both those things. Unfortunately, doesn’t mean I can.

    It doesn’t help except hopefully from a subconscious level, but I want it all to get better for you. Not just the physical but all of it.

    I’m rooting for you and Noodle.
    Rick

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