Another plan destroyed?! What’s up with that?

Evening Gentle Readers!  Today’s post is going to talk about what happens when your body decides something that is directly contrary to what your mind had planned…

I had plans today… First time in weeks I had some plans for something OTHER than sleep, rest, and work… I’d even posted it on Facebook that I had plans!  I didn’t sleep well last night, BUT I did what I needed to this a.m. and started getting ready to leave… Meanwhile, my body is sending me not-so-subtle signals… I was trying desperately to ignore them…  Maybe if I do this, it’ll settle things down… Maybe if I do that, it’ll turn this around… *Sigh*  All to no avail…

What went wrong?  Easy… I let down my guard… Because this last flare dealt with C-diff and NOT just the UC, it’s taking longer for my system to become accustomed to my “regular” foods… I’m also stepping down my prednisone which has been sending me into tail-spins all week… I’m great at the higher levels of pred, and the bottom levels I’m good at as well… But the 30 mg level kicks my tail EVERY time… And this week was no exception… So this morning I stayed at the 30 (will go to 20 tomorrow) and tried what I could to stem the tide of what was going on… All, again, to no avail… I finally texted a friend that I was supposed to meet and told him that I couldn’t make it… I was so disappointed because it was the first thing I’d been looking forward to in weeks!!

I still needed to run into town so I prepared myself as best I could and hit the road… I ran by work to pick up papers that I can work on from home, SHOULD I need to stay home Monday… Ran by Whole Foods (to restock the kefir), then Food Lion and then home… And for those who are wondering, yup, I hit the loo in…every…location… *Sigh*  Frustration abounds… Sooooo what do I do about it… You take it for what it is, a small step back, and you roll with it…

For instance, another friend of mine texted me to say that he’d run into my first friend and had heard that I hadn’t been able to make it out… I told him that I’d needed to listen to my body unfortunately… He responded back with “On one hand I’m glad you’re listening to your body, but on the other hand sorry it’s being so mouthy lately”   I responded back with “Actually it’s being rather anal! LOL”   He told me I was bad; which he’s known for about a decade now… *grin*  I told him that you HAVE to take this with humor…  Otherwise the disease wins… And it’s true!  You have to find the ways to make this whole experience palatable for you…  JUST for you…

So while my frustration got to me this a.m. because my body didn’t want to cooperate, I had to turn that around to something humorous in order to find the positive path again… So this afternoon, I’ve been very careful about what I’m eating, I will have my kefir shake before bed and I’ll start over again tomorrow… I’ve missed out on a yearly event that I was truly looking forward to, BUT it’ll come around again next year… Tomorrow’s another day, another opportunity to try again… And isn’t that what “tomorrow” is all about?  Another chance?

Becoming accustomed to being chronically ill

That title sounds like I should be playing the death theme from some movie… And that’s not really how I mean it…  But part of accepting this condition is accepting that you’ll be dealing with it the rest of your life… Even if you go for the ultimate solution; surgery… You’ll still be dealing with the results of this condition…

Now that I’ve completely depressed you, *smile* let’s talk about learning to live this way… I told a friend yesterday that I was trying to remember more lessons for you but was having a hard time with it… She mentioned that it could be because they’ve become part of my routine… And she’s right… (As always!  *grin*)  As my own current recovery continues, I find that the things I would have balked at 2 years ago, have become the norm… The idea of “going” more than 2 times a day… The pressure (not pain) of having to go… The discussions of “poo”… The constant mental “status check” before I grab my keys, or head down the hallway… I was laughing at myself the other day because I had done a mental check (without even realizing it), then once I had my check, I calculated which restroom I could get to with plenty of time… I came out of my office and turned in the direction I wanted to go realizing I was taking the long way and felt good about it… Wait a minute, I thought… I did a status check, got it, calculated it, calculated the distance to a loo, then figured out that I was fine and could take the long walk instead of having to rush to the closer loo… I mentally heard myself say “whoohooo”… LOL  Now THAT’s a good day!

Our minds are wonderful organs… They can become accustomed to almost anything… As I was sitting here pondering today’s blog, I realized that I had gone through my “usual” routine of going without even realizing it… I was concentrating on another project I had set up for myself and just mentally disconnected from the mental process of “body checks” and getting out of the bed/chair and going… That’s what becoming accustomed to this means… It means finding that place where your body is ok, your mind is ok, and things can progress forward…

BUT, you have to be aware of that as well… Your body can change so slowly and almost without notice that you can find yourself slipping out of remission and be truly ill again before you know it… That’s what got me last time… Well, that and hubris… LOL   As humans, we want so badly to be “normal” that we tend to ignore when things change, until it’s almost too late…  So you have to be diligent about what your body is doing, but also find that place where you can let it go and live your life… And that’s where I’m at… I want to get back to a schedule… I want to get back to the things I want to do… One of my sidelines is coaching folks who are preparing for a speech or presentation… I’ve had to pull back from that in the last 3 months because of my drop out of remission… And because of it, I let a speaker down.. I don’t like letting anyone down, but especially one who was depending on me… But, that’s all part and parcel of this condition… Learning to live WITH it, learning to live AROUND it, learning to live THROUGH it…

There is a non-profit group that runs something called the “Invisible Illness Awareness Week” and a pretty awesome group… During the 2nd week of September they run podcasts, webcasts, etc talking about how it is to live with conditions that are not necessarily obvious to the naked eye…  Here’s their website: http://invisibleillnessweek.com/  

There’s also another group that I am a member of called Crohn’s and Colitis Foundation of America… www.ccfa.org  is the website there… This is a great group and has been a huge help to me over the last year… I’d like to start a support group here in the state where I live because, well, we don’t have one anywhere here… But that will have to come after I know I’ve got the mental and physical energy to do it…

The point is, there is help out there…  We’ve got places to go and talk (well, read and type) and ask questions… And you’ll be doing alot of that, trust me… I do it every day… I have found through all of this that I have a great and wonderful group of friends around me… They let me rattle on when I’m SURE they’re tired of hearing about things… They help me when we go out to lunch, to order things that won’t send back to where I don’t want to be… They keep on the look out for new recipes and new products for me… I can’t imagine where I’d be if I didn’t have these people in my life… So for those of you who read my blog, a simple and humble, Thank You… Whenever you do something like that, you have no idea what it means to me… Sometimes just that one simple act of “Hey, I found this over the weekend and thought of you” can bring me out of a minor depression or low moment I was having… Thank you… Or even just that reassuring nod saying “Yea, I think that’ll be ok for you”… Through all of the physical misery that this condition brings on, that one mental “ok” moment from you, means the world to me…

And to Sophie, who has no clue to the world around her, Thank you… As she lays here next to me, purring that special purr that is reserved for me, she doesn’t know what she’s meant to me either… For those of you who know her and have heard of her, you’ll know what I’m talking about… Sophie has a personal space that’s about 5 miles wide… And if it isn’t for her, then she doesn’t care… But for the past year, she’s been my sidekick… Whenever a flare hits, she’s right there… I can be in the loo and hear her purring from the bed… After a flare, I’m exhausted and once I’ve made it back to the bed or chair, she’ll get up from her Royal Piece of Cardboard and come over to me, lay down, look at me with those orange eyes and purr so loud, I think her little purr mechanism will just fall out!  How do I know it’s just for this reason that she’s purring?  Because as soon as I feel better, she goes back to the regalness that can only be….Sophie… Lady Bast knew what She was doing when She sent me Sophie…

So you CAN learn to live with this… It IS possible… But like so many things you have to learn to live with it YOUR way… Sing it with me “Mmmmmyyyyy wwwwwaaaayyy”   LOL  You have to find the humor in it… You have to find the path that works right for you… Read, read read and oh did I mention, read!  Ask questions… And if you don’t get an answer that’s satisfactory, ask someone else… Don’t jump on every “I found this green leafy thing in my backyard, took it, and I’m healed!” that comes along…  And you’ll see a ton of those… And if something works for you, stick with it!  Find a Doctor that you can trust!!!  This is an imperative!  And above all else, take care of YOU!  When you’re at home, dealing with the pain and all that comes with it, it’s up to YOU!  Sleep and eat well, my friends!

More lesssons learned… And Learned again…

Ok, I admit it, I’m hard-headed… I’m the type of person that figures that once I’ve been through it, I’m good…Don’t need to learn THAT again… But UC is a strict task-mistress… She likes to make SURE you have the lesson… Gooood and got, as I’ve heard it said… So let’s talk about a few more lessons..

One: Probiotics… We’ve heard so much about probiotics lately… But what is a probiotic? Well the clinical answer is here:  http://www.webmd.com/digestive-disorders/features/what-are-probiotics

The nifty answer is that they’re live bacteria that love beating up on mean and nasty bacteria… They do make a difference in our tummies!!  The next question is which one do I take… Well that’s an answer you’ll have to find for yourself… BUT let me offer up these tidbits for your selection… You want to select caplets, not actual pills… Why?  Because manufacturers use heat to make pills and that kills the very bacteria that you’re wanting to have the probiotic for!  So make sure they’re caplets of some form… Make sure they have at LEAST 20 million live cultures… (It sounds like a lot, but remember they’re teeny small!)  LOL  Past that, you’ll just need to experiment to find what works best for you…

Two: Learn to listen to your body… This one is actually a little difficult… I used to know my body very well… A twinge… Yep, know what that is and how to stop it… A Pull?  Yep, can fix that too… Need to use the loo?  I got time… Weeeelll not anymore ya don’t!  You have to learn that when you feel that all too familiar feeling of needing to go, you better take stock of it… For me, my most active time is right after I wake up and for about 2 hours after that… I don’t dare leave the house before that…  Even just walking around the house, feeding the fuzzies, or getting ready to go, I take stock of what I’m feeling… I can be on the other side of the house letting one of the fuzzies in or out, feel something and figure I have enough time to get back to the loo… And 80% of the time, I’m wrong!  LOL  I end up running back at full tilt hoping that one of the other fuzzy kids haven’t take up residence on the floor somewhere!  So you have to start learning how to listen to your body… Take heed when it’s telling you something… And don’t figure that your body is on the same time schedule as it used to be… ‘Cause it ain’t!

Three:  Learn about your environment… There isn’t a restroom between my home and my work that I don’t know… Or at least KNOW is there… I can evaluate them like a real critic too!  *grin*  As this condition has become part of who I am, I have become very shy in wanting to go shopping… Truth is, I loathe shopping now… I have this feeling that the store employees are watching me because some trips I take several detours to the restroom… I keep thinking they’re going to pull me aside and have me empty out my pockets as though I’m stashing things in them, every time I stop at the restroom!  So I very RARELY go into a store I don’t know… My local Food Lion knows my face and I think they’ve gotten used to seeing me steer my buggy over to the far side of the store… (And in truth, I appreciate that they know me… It makes my trip less worrisome… )  They were opening a new Whole Foods in the large town over from me and as bad as I wanted to go, I was terrified… I didn’t know where anything would be!!  Then a friend went and without my knowledge, saw the new store and learned where everything was… He came back to work on Monday and reported that he’d gone there, and told me where all the things were that I needed to know… I was floored that he did that and was VERY grateful!!  Now that store is one of my familiar stores and I’m more comfortable going there… So learn your environment and ask questions when you need to…

Four:  Learn to be comfortable with you… Yea, we’ve all heard this one… Be comfortable in your skin and learn to love you… Blah blah blah  Well, trust me when I tell you that it’s even more important now… I never believed in that kind of stuff, but UC (again, ever the task-mistress) takes a different view… One of my running gags about UC is that many a UC sufferer has learned that they were secretly a nudist!  Why?  Because clothes get IN the way!!  When you have about 23 seconds to get up and get to the loo, trying to unzip those pants, or get those sweatpants untied becomes a major deal!!  Besides, at least for me, when I’m in a flare, my body feels weighted down if I’m wearing anything… Especially around the gut!  Now granted, some folks are not in the position to be able to be their true nudist self… And each person has to find that happy place for themselves… I found mine, is all I’m saying!  *Smile*

Ok, enough lessons for today… It’s time to go outside for some recess and remember why we’re alive in the first place!  So go play and let’s see what tomorrow brings for us!

Let’s talk about lessons learned…

Well shoot, this particular post could on for days with what I’ve learned!  *smile*  But let’s take things in a simple manner…

First: research the heck out of everything!  I tend to crawl the web looking for things in the most obscure locations… But whether it’s UC itself, the meds that your Doctor is mentioning, or a new black slug found in the basin of a lake in the middle of Climax Tennessee, research it!!  It’s been incredible the amount of information that’s out there about new treatments, new medications, and new therapies!  Just last weekend alone there were a report about 2 new drugs that have huge potential for folks like us… Although I love my GI and trust him implicitly, I still research things on my own… I feel like learning about my own body and what’s possible with it is the best way to learn how to 1) cope with this, and 2) get my body back into remission…

Second:  Kefir… This stuff is amazing!  For those of you who have never heard of it (like I hadn’t until 10 months ago) you can find out all of the basic information here:  http://www.kefir.net/      The point is it’s a natural probiotic with WAY more in the way of natural and numerous live probiotic bacteria…  Now, it has the consistency of buttermilk, so be aware of that… *cringe*  I made the mistake of trying to drink it the first time… YUCK!  Then someone said “You’re supposed to add it to something”… Well THAT would have been nice to know!  *grin*  Now, a warning… I tend to not heed warnings, but I’m glad I heeded this one… The first time you add Kefir to anything (my fav: yougurt and ice) only add about 1 tablespoon… Why?  Well because your system will need to get used to it… And here’s the great part!  The first time you try it, about 2 hours after you ingest it, your stomach is going to sound like a war between aliens!!  It’s fabulous!!  LOL  After a week, you can increase it by tablespoons until you’re comfortable… I usually have about 3/4 of a cup now with my yougurt and ice or milk… It really does help me sleep and helps get/keep the system in a much healthier state…

Third: Learn when to call your Doctor!  I learned this one about 7 weeks ago… Again, being the hard-headed person that I am, this particular flare started and I thought I could get it back under control… So I didn’t call my Doctor until almost the end of the first week… BIG mistake!!!  By then, this last flare (which ended up being caused by C-Diff) was out of control… DO NOT WAIT!  If you think, after only a day or two, that you’re in a flare, CALL!  I wish I had… As it was, I didn’t take it seriously and ended up waiting almost 2 weeks before I started any treatment… And this time I paid for it… I won’t do that again… Do what you need to do, but call your GI, get the labwork done ASAP and get serious about it…

Fourth: C-Diff   Ok, this is some nasty stuff… First, a definition:   http://www.mayoclinic.com/health/c-difficile/DS00736    

You do NOT want to play with C-diff… Most Doctors think this bacterial infection comes from being in the hospital… In my case, I don’t know where I got it… I hadn’t been in the hospital for over 7 months, always wash my hands, live alone (so no transference), so I have no idea where I got it… It is very difficult to get rid of and I tried two different type of drugs that made me feel worse than the condition itself!!  Be careful about your health, foremost and first most!  I hope to not get this again, to be sure!

Ok, let me stop there for the night… My work week so far has been unbelievable and I’m still in recovery, so I’m going to get the rest I need… And that, Folks, is lesson Five!  GET YOUR REST!  Again, this was one I didn’t take seriously before, but do now… So, to rest I go… Good night, and sleep well!!!

Ok, I’ve got this condition…. I’ve accepted it… Now what?

Good day, Dear Reader!  We meet again to follow the StormCat on this wacky wonderful ride known as Ulcerative Colitis… We’ve watched her go through the initial h.e.(double hockey sticks) of the symptoms, idiot Primary Care doctors, the fear, the “over the knee” socks, the colonoscopy and finally the diagnosis… We’ve also heard about her wonderful friends, her wonderful Gastroenterologist, and her new meds… So, what did she do after that?!

She adjusted… She experimented… She read… She talked… (Much to the dismay of her poor friends!  LOL)  She asked questions… She laid awake at night and wondered… She looked at the plans of her life and realized that many of them were gone now… She worried… She dreamed… And she put those dreams away… I know this sounds like a death sentence and in truth, it’s not… But UC changes you… It changes what you knew to be true, it changes what you hoped to be true, and it changes your whole honest “gosh-darn-it’s-the-truth” truth…

There are things to know about UC that change your life’s perspective… UC is an autoimmune disease, so right there you’re on the look out for illness… Your immune system is compromised and you have to be aware of that… As someone with UC, some sources say that you’re also twice as likely to have colon cancer… (IE: Mayo Clinic) (wheeeeeee)  Other sources say that the increased risk is “considerable”…  (IE: Wikipedia)   But take your Doctor’s word on this, not mine… *In an official sounding voice* “I am not a doctor or lawyer and have no scientific proof or status in any form to be spouting off my mouth on this subject…Soooo no suing allowed if you quote me and get it wrong!”

If you haven’t found them yet, you have to find the triggers that activate your UC… Many sources say that stress can bring on an attack… Other folks say that it’s certain foods… For me, it’s gluten… I can also have very small attacks with vinegar… So I have to be careful with those… I can splurge a little, if I’m in remission and have been careful up to that particular point… BUT the “splurges” must be very small… Otherwise you get to spend the night cursing yourself and your “gee I gotta have it” attitude with that 4th roll at Texas Roadhouse!  LOL

You also have to learn how to live with this by learning how to use those items that you used to snicker at… Case in point?  “Depends”  Yea, I know… I used to look at those and think “Uh huh…Noooooway”  Well, guess what?  Yes way!  They become part of your arsenal… (Now, if you have a fun sense of humor like I do, that last word there, said in a British accent is quite fun to play with… Go on… Have fun with it a second… I’ll wait…)  Oh good, you’re back… Ok, moving on… The first thing you learn to pack for work or any travel for the day is an emergency bag… I have a pack-back and in it is an extra set of clothing, a wash cloth, 2 Depends, a roll of TB, and a sealed pack of towelettes… It’s in my truck at all times… When I’m in a flare or small episodes, it goes into the office with me… If I’m lucky enough to be able to get on the motorcycle, it’s on my back… It’s simply a part of who I am now… Like you do every day: wallet?  Check.  Keys?   Check… Back-pack?  Yup!  Sanity?  Whoops!  We have a runner!  Oh well, let’s roll!

Now I’ve read many stories from folks who manage to get into full remission and travel the world, go jumping off cliffs, get married, have kids, and in general seem to live the very life they had before their diagnosis…  To a certain degree, I’m still looking for that… What’s holding me back?  Oh, that’s easy… Me…  I still get nervous with any kind of long term travel… Especially if I’m traveling with someone one… Don’t get me wrong, most of the folks I have had to do any kind of travel with over the last 13 months have been very gracious and patient with me… They tell me that if I need to stop, to just say so… And believe me, if I had to, I would have no choice… But as one who loathes taking anyone out of their way, it’s a hard call for me… I would rather be on my own and that way, no matter what happens, it’s only me dealing with it…  So that’s what I do… I deal with it… There are times during my day and week that I can honestly put this behind me and truly enjoy who I am and what I do!  I love my work!  I love coming home and being a hermit crab for the weekend!  And there are hours that go by that I don’t even think about UC… And THAT, Sweet Reader, is what you want!  Why?

Well, you ready for this?  Part of UC is mental!  Yea, I know… Sounds strange, doesn’t it?  But it’s oh so true… I can be having a dandy day, NO rumblings, no sounds, no running down the hallway, just a truly peace filled day at work…  (Those of you who work with me, or who know what my job is like, are laughing out loud at the “peace filled” comment there..)  When…  Someone will come through the door and ask me how I’m feeling… Now DON’T get me wrong!!  I don’t mind that question at all, because it shows a concern for someone… But what happens is, I’ve now thought about it… And my system reacts… When I first read that this would happen, I wondered what kind of pot the author was smoking, was it any good and would he share!  But after experiencing it time and time again, I have to tell you it’s true!  Your body reacts to your mind… Your mind reacts to all of the stimuli around it… So part of that mental process is learning how to have that split second of thought, turn it around, send it back on the road and fugetboutit!  You have to!  It CAN be done!  I do it constantly… (And for this scatterbrain, it wasn’t an easy skill to learn!)

So I’ve learned how to live with the day to day issues of UC, once you’re past the “flare” portion… But I’ve just come through (and am still recovering) from my first major post-diagnosis episode… What did I experience?  Well my first case of C-diff!  And that, Sweet Reader, is for tomorrow… Same channel, same time, same Bat-Chat!

New day, new medications, new terminology and no fault!

An interesting thing happens after you get a diagnosis that finally brings your ailment into light… The sun comes back out, music means something again, birds sing, people smile at you and you suddenly realize you’re ALIVE!  I can’t remember a great deal about the week following my “diagnosis” except joy!  The GI had given me those wonderful meds on my way out the door after my colonoscopy… I know I took them almost immediately because I just couldn’t wait!  They could have been magic beans for all I knew, but it didn’t matter!!  They could have grown horns on my head and I would have welcomed them!  They could have made me into a politician and I wouldn’t have….um, no wait… Let me back up on that one… *smile*

I was given Lialda, and if I recollect correctly, I was taking 8 or 9 of them a day…  After just a day or two, I could already tell a difference!  I wasn’t having the attacks every 10 to 15 minutes!  I had more than 30 seconds to make it to the loo!  The pain began to subside!  All pieces of the great joy that made up that first week after the diagnosis… I wore out the WebMD website reading up on UC… What is it?  Why did I get it?  How do I live with this?  And why couldn’t it have a really cool name?  (Still don’t have an answer for that one…)  Were there any support groups?  What books are there?  And here’s where I hit the jackpot!   http://www.ihaveuc.com/   This is run by a guy who’s had UC for ages, only he didn’t know it… He’s got some great Ebooks that are a wonderful read!  He, like myself, likes to see the humor in things and he’s much better at it than I am… In reading one of his ebooks, one of the funniest things I read was after he was finally diagnosed, and was put on his first round of meds, the improvements that came along… He said that the first time you actually see your poo being solid, you’ll cheer!  I remember laughing out loud and thinking “Uh huh, yea, whatever…”   (Want to know a secret?  HE WAS RIGHT!  I distinctly remember the first time and saying outloud: “WHOOHOO!”  LOL)  He’s very good about answering emails and his website is a great source of information and support!

About a week after I’d started taking the new meds, I had my first real appointment with my GI Doc… By then I’d been able to go to work (whoohoo!) and printed out a ton of material to take with me and ask him about… He chuckled when he saw me with all of the print outs and asked if I liked to research things… Of course I did!  I’m just anal retentive that way!  (Pun sooooo intended there…)  One of the first things he said to me, was probably the most important thing I needed to hear… And if you’re new to the wonderful wacky world of UC, let me say this to you now: IT IS NOT YOUR FAULT!!!  No matter your body size, no matter your lifestyle, no matter what you’ve done for all those years prior to this, IT…IS..NOT..YOUR..FAULT!  It sounds simple, but at some point you’ll begin to question that… And knowing that it has nothing to do with anything you did, will make all the difference in the world… My GI also told me that his own daughter has had UC for over 30 years and that immediately put me at ease… He’s been there.. He’s seen it… He’s watched his daughter suffer with it… And it makes him a fantastic Doctor!!!  So he gave me the full rundown of what was going on… Basically my entire long intestine had gotten in on the show and there were major ulcers all up and down the road… It wasn’t what he wanted to see, but at least he knew now where to take me…  I left his office feeling so much better, and so ready to tackle this…

Unfortunately, after only 14 days, the Lialda stopped working… But, I had read enough at this point to know that this was a possibility… I didn’t panic or get upset… I called the GI back, explained that it’d stopped working and that I was a little scared… He immediately put me on 80 mg of Prednisone… Now, before you get images in your head of the dreaded “STEROID”, allow me to say this… Everyone’s reaction to this steroid is different… I’ve never gotten the “moonface”, or become like Hammy the Squirrel from “Over the Hedge”… (Although I think that would be fun!)  Did I have some reactions?  Yes, I did… BUT with everything I’d been through, it was more than worth it… At 80 mg, I actually didn’t have much in the way of reactions… I did at the lower ranges, but by then I was improving at such a great rate that they were easy to deal with… I did get the Pred Munchies… This is where you want to eat everything that isn’t nailed down… But I prepared for that by having nothing but healthy things around… I did get a little emotional at the lower ranges, but thankfully was able to recognize them for what they were and adjust… (Meaning I stayed away from folks when I could!  LOL)

But the whole point is, the Pred stopped the whole process… In…It’s…tracks… By this point I’d lost 34 pounds the quick and easy way and my GI was irritated by this and wanted it to stop… And he knew this would do it… So another good friend of mine made the trek to the pharmacy to pick up my drugs and bring them to me… (This other friend, by the way, was also a dream during all of this… He came out and took me food shopping, was willing to wait while I made several trips to the Food Lion loo, and even did a quick shopping trip on his own to help keep me with food… I’m telling you, my friends showed their true colors during all of this and I could NOT have made it through without them!!)   The GI said he’d keep me on the Pred alone for a week and then he would put me on a different drug called, ready for this: Mercaptopurine (AKA 6MP)

As I was talking to the GI over the phone, of course I was online typing in that very intimidating sounding medication!  As he talked, I read and began to feel very nervous… This drug is used for chemotherapy!  All kinds of images began to run through my head… Hair loss… Nails falling out… Liver damage, etc… One of the most common side affects was diarrhea… Um, hold on…Stop the bus, what?!  LOL  Isn’t that why I’m taking the drug in the first place?!  How will I know the difference?!  Ok, hang on… Let’s back away from this cliff for a second…  By this point, I was willing to trust my GI with what he was saying and agreed to swap out the meds…

So, off I went to get this new medication… I also talked about the possible side affects with some friends and began to prepare for the worst… My hair by this point was quite long… I’d already donated once before to Locks of Love and fully intended to do it again… Last time I was a blonde, this time I was a red-head… Soooo in preparation, I went to one of the local Cosmetology schools and had them cut it for donation… I figured that, if I’m going to lose my hair with this new drug, at least let someone else use it for the same purpose… After that, it was a matter of taking the drug and seeing what would happen… What happened?  LIFE!  OH my gosh… I was able to SLEEEEEP!  I was able to eat!  I could drive back and forth to work!  Was I still scare of accidents?  OH please, yes!  And this is another lesson for any UC sufferer…

Tomorrow, I’ll talk about how your day to day world changes with that fear… Trust me when I tell you that what you’re willing to overcome to be back out in the world, makes the human a truly amazing person… Medication horns and all!  Til tomorrow, Sweet Reader, keep the butt side down and the toilet paper roll filled!

Let’s learn about colonoscopies!

Today, Children, we’ll learn about colonoscopies… And oh what fun they are!  Preps, IVs, long probe thingys, and videos… Now, if you’ve never had one, you’re probably a little confused right now… If you have had one, then you know what I’m talking about…

Just for fun, go do a Google search for Bill Engvall and colonoscopies… His stand up about it is hands down the funniest thing I’ve seen on the subject… I watched his video about 4 times and took heart in his view on it… Now, knowing that I was probably going to have to have this procedure, I decided that if by gosh I was going to have to bare my fanny to man a barely knew, I was going to do it (ready?) MMMYYYY WWWAAYYY!!  So I went online and found me a pair of totally cool, “over the knee” black wool socks… Up the outside of the shin, in bright green letters were the words “Wicked!” on both socks!  HA!  By gosh, if I have to do this, I’m going to go in style!

Now, the first step for preparing is the “prep”… What is this?  Easiest description in the world: wallpaper paste… You’re gonna drink it, and you’re gonna like it… So if you go into it with the idea that it isn’t going to kill you, but will make you completely appreciate the first piece of real food you eat afterwards, you’ll make it through…  As I said in one of my earlier blogs, I moved my computer chair into the loo, put my feet up on the tub, popped open the first container of prep and began my wait… Didn’t have to wait long either!  And for the next 3 hours, my routine was pretty much this: lean back in chair, breathe, jump for loo, wait, clean, back to chair, lean back, breathe, jump for loo, repeat about 200 times…

Now, after 10 weeks of my body pushing everything out of it that it could get its little colon fingers on, you’d have to wonder WHAT the prep was able to get rid of!  I mean, in 10 weeks I’d seen bowel, what little food made it past my lips, water, blood, and I believe I saw a pair of shoes at one point!  (It was quick and I wasn’t doing inventory)  So surely there was nothing left in me, right?  Wrong!  I have NO idea where that prep found things to get rid of, but it did… Maybe it had it delivered in for the occasion?  Who knows?!  But after 3 hours, I decided I’d given enough… I had ingested about 85% of the prep and decided that if that wasn’t enough for the Nurse, then ppppbbbttt on her… (Hey, I was exhausted at this point so maturity went right out the window…)

The morning of the procedure, my best friend drove the hour trek to come and get me and drive me back into town… (Bless her giving heart, it was early in the a.m. too…)  But I got a little surprise before even hitting the door… Want to guess what it was?  Ladies?  I think you can help me with this one… What is one of the most inconveniently timed event in most women’s lives?  Yep… You got it… Mother Nature decided that she’d been left out of too much lately and decided to come along for the ride!  *groan*  And this is where I learned one of the most important lessons for any UC sufferer… Humility?  Modesty?  Gone… Vamoose… Left the building… Give it a party, ’cause it’s gone… So in her car I went and off we drove… I was just praying that my body would allow us to finish the drive without any sudden stops for a bush, tree, or fast food restaurant restroom… My body cooperated and we arrived in plenty of time…

As I sat there, waiting to be called back, I reflected back on Mr. Engvall’s experience and tried to pull humor from it… When they called my name, (my friend would have to wait until after the procedure to come back), I felt like I should make a speech… You know, something like “For those of us about to bare our entire backsides to a man who hasn’t even taken us to dinner, we salute you and ask that you go on without us!”  But alas, my moment passed and I followed the Nurse quietly and peacefully… Well, peacefully if you don’t count me hanging on to every door frame and door knob along the way… In a vain hope, I even explained that since Mother Nature was here, surely we’d have to wait… Nope… They’re prepared for such events… Dang it…

So, off came the clothes, exposing my completely cool “over the knee” socks!!  In came the IV, and before I even had a chance to completely get the sheet covering me nice and comfortable, they grabbed the rolley bed and started rolling down the hallway!  “WAIT!”  I yelled… They stopped and looked at me curiously… “I..um..I’m not ready” I said feebly… They looked at each other and continued their trek down the hallway… As I looked into the cubbys of the other poor saps waiting to go in, they all had that same look on their face!  “Good luck!  We’ll pray for you!  And wait for us by the Pearly Gates!”

Now, being the smart-butt that I am, I was bound and determined to do this my way… I’d never had anesthesia before and didn’t know what to expect… As I explained this to my Nurse, she said that they would give me just a teeny amount first and see how I did… Ok, no problem… They gave me a teeny amount… And as I laid my head down, the room spun… As I noticed that the room was spinning and wondered how in the world the Doc was going to catch my fanny while it was spinning, who should enter the room, but the GI himself!  As he entered the room he said “Are ya ready for me?”   In my typical fashion, I opened my mouth to say something pithy, aaaannnnddd can’t remember one dang thing after that… I have no idea if I spent the next 45 minutes with my mouth hanging open waiting for that pithy comment, or if the Nurse at least had sympathy enough to shut it for me… But whatever happened, I was gone… Out… Lights out… Left the building…

The next thing I remember is waking up back in my cubby, with my best friend sitting next to me taking copious notes while the GI explained what all had gone on… (I love that woman, I really do…)  She knew what to ask, and what to write down… Which was great because all I could was lay there and think “wha hoppen??”  I vaguely recall the GI saying “ulcerative colitis” to which my brain responded with “mdphyeo what?”  I don’t remember getting dressed, although I know I did… I kind of remember being wheeled out to the car and getting in… I also remember that when we got in the car, I was determined to research this new “diagnosis” that I finally had!  BAAAAD idea… As she drove away from the facility, I squinched up my eyes (with a brain still full of dream juice), grabbed my iPhone and started researching… In a moving car… Head full of dream juice… NOT a good combination… Thank goodness I had a plastic walmart bag and was able to use it for what I’m sure was it’s fully intended purpose… And to my friend, I have apologize profusely for that lovely little side trip…  Afterwards, I put up the phone, and allowed her to drive me home in peace…

As I left the building, the GI gave me a couple of boxes of a medication that was supposed to finally put an end to this misery… To me, it was more valuable than a pound of gold… It would finally make things “all better”… Getting home, my friend helped put me to bed, and I slept a well deserved (if not brief) sleep of someone who’d been through hell…

Tomorrow?  Learning to live with a life-long, chronic, and sometimes debilitating condition…  Until then, Readers please remember, if you have to go, go in sstttyyyllee!