To Med or Not to Med

One of the big questions most of us who get diagnosed with a chronic illness face is the question whether to take meds or not.  With all of the concern over pharmaceutical companies and western medicine's oft-desire to cover pain with drugs, most people start off by refusing to take them and look for alternate paths to a remissive state - homeopathic remedies, diet changes, other lifestyle changes  - along with general denial in many cases about the seriousness of the condition and a hopelessness that this is what life dealt and then becoming the disease.  

I tried the denial and alternative medicine route for about 10 years until I was so sick I couldn't even get out of bed.  My life was revolving all those years with my identifying with my disease, becoming it, letting it be ME.  This is probably one of the worst things can happen to anyone; it is a place of hopelessness and exhaustion and devastation.  It is a stop many of us take on the chronic illness road and is also a part of the grief process we go through when we are diagnosed with something that we will have our entire lives.

From my previously blogs, you may remember that I was switched in 2013 to Lialda after my Asacol prescription was no longer available due to patent expiration.  Things haven't been great taking Lialda, as it hasn't provided the level of remission I had experienced with Asacol.  All that said - I had forgotten how BAD I was when I'm not on my meds. Here is how I was reminded...

The meds I take are short acting, so once they are through my system (in a day) there isn't residue left lingering behind.  A few weeks ago I went out of town and forgot my meds. By the second day I was terribly ill with severe pain and couldn't leave the bathroom, and any food I consumed didn't bother to stop long enough in my body for any nutrients to be absorbed.  I felt weak and horrible.  And at that moment, I remember how it was before the meds. This is what my life was like.  This was the place where I had given up all those years ago before I finally got a grip, took control of myself and started medication. 

I got home a few days later, started taking my meds again, and within 48 hours was back to what I call "Lialdo normal."   Once again I was so appreciative that there is something that lets me function in the world and be the person I want to be. 

I know there are many people out there with their own opinions and thoughts as to how one should handle their illness, especially when it comes to taking medications. My thoughts to those struggling with this is that illness is a VERY personal experience. What happens to me and works for me is my journey.  Others can mean well, but no one knows what you are going through except YOU.  The same diagnosis in one person isn't the same for someone else.  While it's great to share experiences because there is almost always a nugget of information that may help someone else, it's also important to respect what others are going through and their journey, be there for them, and support the choices they make.  Medication may be for you, or it may not.  My belief is to try the things you think will give you back your life, or give you back something that can be an okay new normal. Don't settle for the diagnosis and let it become you; try anything that is available to you and might help, whether homeopathic, Eastern, Western, or a combination.  You already have an illness, now take a hold of it and YOU tell it how it's going to be.  

Ugh

Well, the new meds suck. The good part about only taking them once a day means if I miss them, by the time I remember I'm sick.  It's seriously cramping my style.  I had a gig last night and while getting ready at the venue, I got the familiar cramping and pain, then I started to shake. None of those are a good sign - especially when trying to squeeze into fishnets and a corset to take the stage for an hour plus set.  I sat in the bathroom, trying to breathe, trying to decide what to do.  I sat there long enough to curse the delicious Mexican food we ate when getting to the venue early. I prayed to whatever ulcerative colitis god there is up there to let me get through the gig, and listened to my usual inside voice telling me to calm down, and I'd get through it like I have so many times in the past.  After a while, and getting mildly sick in the bigger picture of a colitis flare,  I started to feel better, and just kept my fingers crossed. I drank a lot of water.  And I made it through the gig, and home.  Whew.

A friend of mine is getting ready to go through the reconnection surgery.  I can't recall if I've written about this before, but it's the surgery that most of us dread BUT also the one almost everyone says they wished they had done 20 years before. In the surgery they removed the diseased part of the colon and then reconnect those pieces.  It's amazing it can even be done and for most intents and purposes, cure the colitis.  Most of us with UC go through our lives dealing with significant pain, friends and family who don't understand our illness, and just try to make it day to day.  I'm nervous, excited, and envious for my friend - even though its the thing that all of us try to avoid.  I'm worried that these new meds which aren't working as well - and may be taking my colitis out of its quiescent state - will mean surgery is more likely in my future are some point.  Ugh.

Wow - it's 2014

Somehow I let more than two years go by without writing - and left everyone hanging wondering what the heck happened after my colonoscopy in 2011!  Eesh, I need more brain cells. If anyone has any, pass them over!

Well, it is funny timing since I'm actually due for my next colonoscopy already - that's how long I waited to write again. D'oh!  But I'm avoiding it and will continue to do so until my doctor won't refill my meds without it so that part hasn't changed lol.

Speaking of - I'm on new meds.  As you may remember from my old blogs, I was on Asacol for several years and it was working miraculously!  Last year I got a note from my doctor in the mail which said I was being moved over to Lialda because Asacol was being discontinued. I literally set the letter down and walked away in disbelief.  Then in denial. Then I read it again. Still denial. I let it sit for two more weeks. The doctor's office called me to make sure I got the letter.  I didn't call them back.  Then another letter came, this one more insistent and the doctor's office was leaving regular messages.  So I caved. I called my doctor back to talk about it and even scheduled an appointment to see her.

One thing with chronic illnesses is there is ALWAYS something to learn. You never know it all. So this time what I learned is about patents. Oooo, ahhhhh.  Apparently the Asacol patent was up, which means that it could now become a generic and other companies can make it; which in turn means the manufacturer loses money. So they let the patent lapse and it is no longer on the market.  They made a new formula, but my insurance company doesn't seem to like it so I have been put on Lialda, made by some other company.  The good news is I'm taking 2/3 less pills a day - just 3 horse-size pills one time a day instead of the smaller 9 pills a day I was taking before.

I was admittedly really nervous changing meds. I had panic attacks thinking I might get back to where I had been years ago, not functioning, ill most of the time. I saw myself losing my active life - my bands, my boyfriend, my volunteer work, and my ability to function and being bedridden again.  I was a wreck. I tried to talk my doctor into letting me go on the new meds the Asacol manufacturer was making as in my little head I thought I'd have a better chance at success since it was a similar formulary. But, because of my insurance (for which I am forever grateful), I had to talk Lialda and fail at it before I could try the other out-of-network pharmaceutical.

So I've been on Lialda about six months.  It's not great, but okay. I'm having more trouble than I was, more fatigue, things aren't as hunky dory downstairs as they were.  But my life didn't completely implode so it's all good.  I'm still figuring things out.

And before I forget - my 2011 colonoscopy was a success!  Didn't even do the general, they put me 'just under' and it was another blink of an eye and I was out and had an easier recovery than when I was under complete general. Love my new doc!  And diagnosed with it being "quiescent"- which is a good thing.

2014 promise….more blogs.  Stay tuned!