Biopsy Fun

I'm still recovering from last week's colonoscopy, and the 40 biopsies they did which always leave me very sore.  Fortunately it all came back negative, which means I'm clear for three years until the next one, woo hoo!!

While I get the importance of the process, I really wish there was another way to get the same information that didn't involve such an invasive procedure that leaves me unable to do much for at least a week or more afterward.  My family has a history of UC, but not of colon cancer, so in the bigger 'risk' bucket I'm on the lower side. There are virtual colonoscopies now, but they aren't widely available. My understanding is that you still have to do the prep (yuck!), but then there isn't any invasion which would mean a lot less recovery time - especially for someone like me who has to undergo general anesthesia.

Biopsies, for those that don't know, are portions of your tissues that are removed so the pathology of them can be viewed.  They look not only for cancer, but other types of diseases and screenings as well.   I have many friends undergoing breast cancer biopsies, since there seems to be almost epidemic proportions of that disease, particularly among my age group.  Biospies can be frightening, and waiting for the results emotionally painful, but they are a critical part of helping you and your healthcare provider understand your needs.

Colonoscopy Revisited - Gavilyte and all Things Prep

Well it's been more than a year since I've written. It's been a whirlwind year, which saw the implosion of a relationship I had been in for 4 years in a most hurtful manner, the passing of my mom, subsequently reuniting with my boyfriend during the tumult of dealing with my mother's loss and getting engaged, and then moving to a new city.  Finally, just a couple months ago, I started to pull out of that spiral and look at my life and what I needed to do to take care of myself again. My new insurance in January meant that I could return to the last doctor who did my colonoscopy and did a great job - hurray!  So, today was that day. I had been worried about my health - maybe it's just the changes of getting older but things haven't been feeling right - and I knew this was something I should have handled a long time ago.

As someone with chronic ulcerative colitis, diagnosed for 27 years, the physician's thought usually is a colonoscopy every 1-2 years.  The last one I had was in 2011; five years ago.  This is primarily because of my complete distaste for it, as well as the new Gastro physician I had I wasn't very fond of doing the procedure. Often I am forced into doing it because I can't get my meds (Lialda) renewed without it, but through several doctor changes due to insurance moves and then additional maneuvering with my former gastroenterologist, I somehow managed to not have one for many years.

One of the hurdles for me is that I have an extreme overreaction to the procedure, so general anesthetic is required.  I found this out in my late 20's, when two procedures - which mind you I had already done the bowel prep for - had to be cancelled because of the pain I was experiencing during the procedure. Now, things get fuzzy, I go to sleep - and wake up in recovery. This isn't for everyone - anesthesia is nothing to mess with - but for me it's mandatory. And if I have a GI who doesn't support it, I'll move along because I've been there before.  Remember - it's always up to YOU to take care of yourself and your needs, and do what is right for you.

What most people dislike about the procedure - whether having an illness or not - is the prep. You drink a gallon of a laxative to get yourself cleaned out, and it's not fun.  I've had much more luck the last two time with the prep Gavilyte-C, rather than what I used previously (Golightly...which is definitely a misnomer).  I do have some suggestions for making it easier to swallow to share.

1)  If it has a flavor packet, use it!
2)  Mix it in advance with filtered water, and chill in refrigerator.
3)  I chose to drink multiple glasses as it doesn't feel daunting to have a gigantic glass in front of me - so a small glass (8oz) every 15-20 minutes.
4)  Use a straw - it really helps to avoid the taste, which I promise you, you will get sick of quickly.
5)  Use a chaser - ginger ale works well!  How I do this is to place the straw in the glass of preparation, and take as many continuous sips as I can (usually 8, which is about 4oz) and right after the last sip, then immediately take a sip of ginger ale (also through a straw) and swish in my mouth.  It really helps me to get it down!  Ginger ale counts as a clear liquid.  7up or sprite works well too.

For me, the prep takes about 2.5 hours. The goal I guess is 2 hours, but this is what works for me and avoids gas and bloating.

A big part of your prep being easier is the pre-prep - that is, stopping a lot of solid foods before the procedure. Prepare yourself with broths, jello (not orange or red), and things that qualify as a 'clear liquid' and start as soon as possible. Usually it's required the day before the procedure, but starting sooner than that will help, especially if your system is slow like mine.

This year, I had a 24 hour flu (which I usually get once a decade) which meant I had complete elimination of ALL of my food the Saturday before the procedure, which was scheduled for Tuesday. I wasn't hungry Sunday still so was mainly on liquids. Unfortunately by Monday I was really hungry, which is day I could have absolutely no food.  So I stayed on liquids all day until my prep began. I noticed that I began clearing within 20 minutes, which is very fast in my experience, and without any cramping or issues - I assume because I had no food in my for several days.

My prep required 1/2 gallon at 6pm the night before, and then the other 1/2 gallon to be completed 3 hours before my 7am appointment...which meant waking up at 1am to start guzzling until 3:30am.

We got to the hospital outpatient surgery center - getting a little lost - and checked in.  Everything was timely.  My fiancé was there to drive me home, as it's required to have a ride home after.  They took me back almost right away, and got me ready.  Due to my interstitial cystitis which affects my bladder, I had to go the the bathroom about 5 times before I was wheeled in for the procedure.

Important things to make sure your medical team knows are any medical allergies, or previous reactions to anesthesia.  I'm allergic to sulfa and augmentin.  In addition, many years ago I had a very bad reaction to an anesthesia and so that isn't used any longer.  My main problem is that I can't remember the name of it! The benefit with staying with the same doctor long term is they can look up what worked for you last time - so when he anesthesiologist came in to meet with me I told him my 2011 procedure worked great and to use that cocktail - which was a combo of propofol, ketamine and some other ingredient which escapes me. He looked it up in my chart to see what had been used.  That was helpful as it was different than he would have selected on his own, and sure enough I had no issues at all with it.

Often will colitis they will take biopsies, because of the higher risk of colon cancer from the disease. In the past, I've had between 11-14. For some reason, they took 40 this time...sampling the colon in 5 sections and taking 8 in each section. Better safe than sorry I say.

As I'm writing this I'm laying in bed resting from the procedure. I was home by 11:30am, and just now starting to feel uncomfortable as the pain meds from the procedure have worn off. That's okay and expected. They told me things are looking pretty good, which I was very glad to hear as I haven't felt as great taking the Lialda as I did the Asacol (reported in my earlier blogs.)  If all is okay with the biopsies, I won't need to return for 3 years for the next one.  Woo hoo!  It's the little things like this that make my day sometimes.  :)

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!

Here We Go......

I'm working on my second half gallon of GaviLyte at this writing. And, not even remotely trying to jinx myself, it's actually all going okay.  I'm getting it down (honey end the end of each glass is helping with the gagging) and I haven't had any of the telltale cramping that used to always accompany the evacuation.  My boyfriend keeps saying "I told you everything would be fine!"  but I guess I really didn't believe it.  My fear of a repeat of previous experiences kept me from doing this for the last four years. Now, I'm not saying it's amazingly great and I'm ready to do it all the time or anything...that would be a big NO. But, I'm getting through it. I even managed to cook my son's dinner in between runs.

One thing I can't figure out is why on earth they can't find something better to use to get one cleaned out sufficiently. We can put a man on the moon, but we can't find a way to make this stuff taste better? Hand it over to Coca-Cola I say, see if they can come up with something! Oh, wait...bad idea. They had that whole "New Coke" thing which was almost as bad.  Scratch that.

My procedure is set for tomorrow at 11am.  The anesthesiologist will be there, although my doctor is going to try and put me just under enough herself first, but with him as a backup. I haven't been able to tolerate adventures up that direction without being out for years. I told her this, but she's still gonna try. I guess it's safer for me if they can do that, but I don't want to feel anything, nada, nyet.  I'm way too sensitive from too many years of illness.

Well, back to the next glass. Wish me luck tomorrow!  More to come.

GaviLyte

If you don't know this word, then you probably haven't had a colonoscopy.  I'm in the midst of preparing for mine now. The liquid diet starts tomorrow, so I just finished making lots of varieties of jello jigglers and bought all the other exciting things that will fill my day before I start drinking the GaviLyte. GaviLyte will, if I manage to get it all down, clean me out entirely. It's usually nasty to drink (though this one came with a lemon flavor packet which I'm not sure is going to help) and there's an entire gallon of it. I don't usually drink a gallon of anything in a day. 

When I was first having colonoscopies and the myriad of other tests before diagnosis, there was something called GoLightly. That one really made me laugh because it was the exact OPPOSITE of what you do.  After a while I switched to the sodium pills which I greatly preferred, but my doctor told me they have been recalled. Apparently if you don't drink enough water with them you can give yourself a heart attack, or something like that. So, well, no more sodium pills for me.

So here I am, back to the gallon jug of doom.  I bought bottled water in the hopes of making it taste slightly better. I didn't count however on the cold water causing the mixture to bunch up, so I'm writing this while I'm waiting for it to get closer to room temperature to dissolve so I can put it back in the fridge to get as cold as possible. It helps to get it down when it's cold. Or that's the theory, anyway.

Tomorrow, when I awake, it's liquids, work, liquids, bathroom. That's my exciting plan for the day. Wednesday morning I'll drive to my boyfriend's house, and he'll take me to Kaiser.  After I'll stay at his house where he promises to dote on me so I can recover.  That's a great thing to look forward to, waking up with him there and knowing I don't have to do a single thing until I feel better.

It's been four years since my last colonoscopy. That's on purpose, because I'm supposed to have them every year but I hate them. I LOATHE THEM. Yep, that's a good word.  I can't handle the scope so it's always general anesthesia for me which frankly I prefer. Blink, and its over.  I seem to have quite a bit of trouble in recovery though due to the numerous biopsies they have done every time I've had an exam.  I feel like crap anywhere from a few days to a few weeks after.  I'm hoping this time maybe it won't be that bad. I'm also hoping all goes well with the anesthesia since after losing my elderly cat while under I now have a fear of it...not to mention the whole Michael Jackson thing.  I'm trying to just keep positive thoughts and the panic that's rising at bay.

So, here's to some yum yummy stuff and maybe another four years until my next one......