Back to the Books

Now it was time for me to resume my education.  How I had made it through each day before diagnosis is beyond me because now it seemed even tougher.  Maybe in part because I had gotten behind in my classes.  I was a decent math student until I had to take Algebra.  My math skills went downhill from there.  Add in an illness and subsequent absences from class, and I became terrible in math.  I was taking an Honors Algebra 1 class.  It seems like I passed the class with a low D.  This is no reflection on the school system or the teacher by any stretch.  More so, I believe it was a reflection on just how hard it was, and still is, for me to understand more advanced math.  Even base level equations pose a struggle for me to this day.  All of my other classes I did fine in.

There was an incentive to doing well in the classes I guess you could say.  If a student could keep an A average throughout the term as well as stay within the number of days allowed to be absent from school due to illness or whatever the case may be, the end of course test could be omitted.  I could meet the grade average requirement (except in math of course).  But I'm not sure I ever met the requirement regarding absences.  I'd easily miss school with the ups and downs of my (then thought to be) Ulcerative Colitis.  Regardless of the grade I managed to end the term with, I still got the joy of taking that last big test.  I'm sure it seemed unfair at the time; to be able to keep my grades up while being sick and being absent from class because I was sick or at appointments.  But those were the rules.  Now, I can see and understand that there are those that possibly would miss class quite often if such rules weren't in place and thus enforced.

Regardless of how well I did with my class work, getting up and going to school was challenging.  When I was on prednisone, it made me feel crazy and weird.  Plus it made my outward appearance change which was hard for me to deal with; the acne that seemed to take over the majority of my body, not just my face; the swelling that changed my clothing size quickly so that I would have different size clothing depending on where I was in the cycle of illness and remission.  And those heart palpitations that would hit out of no where and make me feel like my heart would bust out of my chest before it passed.  

There were times that I just didn't feel well.  Particularly, this would be the case after the prednisone had been tapered off, and the medicine had left my system.   This medication seemed a guarantee that my IBD symptoms would remain silent.  But when a flare up would occur, it was as if the symptoms would return with a vengeance.

It was hard facing my peers everyday with these changes.  I was fortunate to never be bullied for my differences.  But then I wonder how many people actually knew that something was going on with me.  And if they knew something was amiss, did they know what it was?

I was carrying around a seemingly invisible disease; apparent to me of course as I was the one going through it and to those closest to me who had either seen my struggles first hand or had been informed of my situation.  But to the person on the outside looking in, would they know unless I or someone else told them?  It wasn't something I really wanted to announce.  "Yes, I'm sick and I have bloody diarrhea everyday, multiple times a day when I'm having active symptoms due to a form of IBD."  Yea, I don't think so.  There was a guy who did actually ask questions.  I just couldn't build up the self-confidence to tell him the truth of the situation.  I tried to play it down.  Basically, I guess you could say I lied.  Eventually the holding back was hard and would lead to some lonely times.

My Greatest Experience

The medication routine was getting into full swing.  My new way of eating was taking some getting used to.  And now, I just had to learn how to live with a chronic illness.  Oh sure, I had been living with one, with all of the symptoms and struggles, months before an actual diagnosis was made.  But I was too naive to think anything was wrong with me.  Well, now I knew.  I had an illness.  And as I said, it was a chronic illness.  I was going to have to live with this for the rest of my life.

The rest of my life...how many teenagers, how many people even, think about the rest of their life?  The furthest time into the future that I could consider was getting to Christmas and having time out of school for that.  After Christmas passed, I was readying for summer break, so what's the rest of my life supposed to mean?  I couldn't understand that.  How much living could one have done in 14 years to be able to consider life 15 years later, 20, 30, etc?

Sure, I had developed and changed mentally, emotionally, and physically.  But my life experiences were limited to childhood growth.  I had participated in organized sports (basketball).  There was school of course.  And there were the various clubs and activities to envelope one's time and broadened ones view on life.  That was about it for me though.

Except for one big life experience.  (Well, it was and still is big for me.)  Before I begin with this, I want to say that I realize that this is not something that all who read this will agree with or even desire to read about.  However, I make no apologies for what I'm sharing here as my sole desire is to tell of my journey with IBD, the struggles and the triumphs as I view them.  I hope that all who read this, regardless of your stance on this (or any subject matter that is brought up) will read with an openness and not feel a sense of pressure on my part to pull you to accept my views as your own.

Part of my journey started before I even developed symptoms.  This carried through to the diagnosis and even to this very day.  I grew up in a home with a foundation built on God.  My dad is a Baptist preacher.  Even though both him and my mom weren't taken to church on a regular basis during their childhood, they found it of great importance to raise myself and my siblings with more consistent Biblical instruction and worship time.

I met Jesus (of course not face-to-face) spiritually on my 14th birthday.  My thinking is that He chose that day for me because He knows how hard it is for me to remember dates period; so important ones like this would be a challenge for me.  When I got saved, I was alone, in my bed.  No one was speaking to me or prodding me to do or say anything.  It was at night.  And it was just me and Him.  I knew I was missing something or more like someone.  And that Someone was Him and His spiritual presence in my heart.

I'm thankful for this experience that will be with me for the rest of my life.  I've been able to turn to Him on so many occasions since, regarding decisions that needed to be made; a lot of which were in relation to my health.  And other decisions related to...well...life.  I would need Him often as I would live with the struggles of a chronic illness.

At Least I Can Eat

I finally made it home after my first ever hospital stay.  And my how things had changed in just a matter of months.  I went from being a perfectly healthy 14 year old, to a very sick one quickly.  My freshman year of high school started out seemingly normal.  Now my life would be forever changed.

Ulcerative Colitis-I have this diagnosis that I still don't really understand.  It's just nice to have a name to give my troubles.  Which, like I mentioned in the previous post, seemed to be resolved thanks to the handful of medications I was now taking (Asacol, 6-MP, prednisone, and maybe more but that's the ones that stand out from memory).  With all of these floating in my stomach, I needed to make sure to eat.  Of course with the prednisone, I had no problem eating.  But now my diet had to be changed due to the condition of my colon.

Now, I could at least eat which is tremendous progress and a relief compared to a few months ago.  There were foods to stay away from now and foods that were suitable for a person with Ulcerative Colitis as recommended by my gastroenterologist.  They recommended a low residue diet.  I also stayed away from dairy and acidic type foods.  And I steered clear of spicy foods.

As far as low residue-at this point in my life, I had yet to develop an appreciation for fresh fruits and vegetables.  I didn't really care about things that grew on trees or came from the ground.  The salads that I now eat almost daily, it didn't hurt my feelings that I couldn't eat those.  I wouldn't put lettuce or tomatoes on my hamburger.  I actually had corn (that had been cooked), but it was fresh from the garden.  Even with that, it didn't settle well.  It tasted great, but things ended poorly.  (Someone with a history of severe diarrhea doesn't need the aid of a high fiber diet.)

Then there are the whole wheat/whole grain products.  The "loss" of this was like how I felt about salads.  White bread, white rice, white pasta were my preferred choice.  Original Cheerios, I thought to be dull, and that's been the case until the past couple of years.

I essentially went on a lactose free diet.  My parents bought a milk called Sweet Acidophilus.  This is where my new diet would hit hard.  I was, and still am, a lover of milk.  And now I would have to drink this seemingly foreign concoction?  That first taste was terrible!  But come to find out, that first drink was what my mind told it to taste like.  The reality is that it tasted like regular milk.  How about that?

When I stayed away from foods with acidity, that broke my heart.  Spaghetti and pizza fit in this category.  We tried to make this work.  At least for spaghetti.  This was a wacky, desperate, and just plain wrong combination, but eating spaghetti plain is not good.  Spaghetti sauce would be too much for me to try and digest, and I was staying away from dairy, so Alfredo sauce was out.  I could eat ground beef so that was added, but of course the combo was still dry and bland.  Why not put ketchup on it?  Yes, I could eat ketchup, and yes, I tried it on it.  It wasn't dry at least.  And ketchup pairs well with ground beef.  Spaghetti noodles, not so much.  This was so sad and awful.  But like I said, I was desperate.

As far as pizza though, we didn't find a way to make that work that I remember.  Pizza just had to be deleted from my life.  The pizza sauce, the cheese, and possibly the sausage with its spices, I'm sure would have sent my intestines into overtime.  It was terrible.  I love(d) pizza!  What teenager (or human being) doesn't?  And it seemed to be the meal of choice for all events requiring food.  (Not really all of them, but it was the case for many and one too many for me.)  Again, sad and awful.

With no cheese in my diet and with my staying away from any potentially spicy foods, I resorted to eating hamburgers and french fries at Mexican restaurants.  They aren't known for those types of food either.  But who knows what kind of havoc those Mexican spices paired with cheese and lettuce and tomatoes and things would have wreaked on my diseased colon had I tried to eat a fajita or a taco salad or something.

Then there was ice cream.  Again, what teenager (or human being) doesn't like ice cream?  Although there may have been lactose-free versions of this available at the time, I can't recall trying any.

My family did their best to accommodate these new dietary restrictions buying foods suitable with the recommendations of my doctor.  And meal preparations had me in consideration, too. (like with the spaghetti).  If a spicier meal or just one that was harder for me to digest was being prepared, there would be a separate preparation for me (like with the spaghetti).

It was understandable why I needed to abide by these new dietary changes.  If I wanted to try and keep my symptoms under control, this was a good way to do it.  I didn't go hungry.  (Well, I did because the prednisone made me feel that way 24/7, but I wasn't malnourished.)  It was just very irritating.  Like being on a weight loss diet that says you can't eat this or that.  My problem is I didn't feel the leeway to give in to my temptations.  That could lead to a relapse.  I didn't want that.

It was isolating, a little humiliating to some degree.  I didn't (and still don't) like to be singled out.  And with my meals having to be different than those around me, it made it feel like the attention was on me.  That of course was never the intention.  Seeing others eating foods I loved brought on a lot of "why me?"

The Miracle Drug?

I'm referring to prednisone; a steroid.  It's the medication that provided a deceptive feeling of security for me and that all would be okay with me and my health.

Prednisone is used in conditions where inflammation is present; conditions such as asthma, Ulcerative Colitis, Crohn's Disease, various skin conditions, and other ailments.

In my case, prednisone was used to help treat inflammation which caused my intestinal bleeding and diarrhea.  When I started taking this medicine, I thought for sure my health was on the up and up.  I could eat whatever I wanted.  And enjoy it!  I had energy to get up and go.  Staying at home was now no fun.  I had practically been confined to home for months prior to this.  I could stay awake easily too, instead of feeling like life was draining from my body.  Exhaustion seemed non-existent now.  Surely my health must be improving between this medication and the others I was taking.  Life could go on.

But all of those "good" things about taking this medication started to take on a negative appearance.

After a little while of taking prednisone, vanity had set in.  I had finally seen a picture of my post- prednisone self.  A side effect of the medication is call moon face.  And did I ever have it!  I saw myself in the mirror everyday, and yet, I never noticed the drastic swelling in my face and over my whole body.  I developed stretch marks on my sides, legs, and arms because of the rapid swelling.  It took me several years before I became comfortable wearing shorts and sleeveless tops.  This sudden awareness opened my eyes and started my dislike for this medication.

There were times throughout my journey, when the flare-ups occurred (the disease rearing its ugly head), that I'd be on 100 mg of prednisone as my starting dose.  And over a course of many weeks, the medication would be scheduled out to where I was able to taper off the medication slowly and safely.  I couldn't wait for the last pill to be gone.

Prednisone made me crave sweet and salty foods constantly.  And it has adverse effects on blood pressure and blood sugar.  Eating whatever I wanted wasn't really all that great because eating the foods I craved was not helping my blood pressure or my blood sugar.  Plus there was rapid weight gain (from the swelling and ravenous appetite) which to a point is good as I was so thin.  But only to a point.  I wasn't gaining weight in a healthy manner.

I may have felt like going out of the house more, but now I was self-conscious of my appearance.  I was swollen all over.  There were major acne breakouts, which for a teenage girl is horrible!  And increased hair growth (that I still unfortunately have to struggle with and is also horrible!).

And I wasn't just energized.  I actually had trouble going to sleep and staying asleep as I was getting a constant buzz of prednisone pumping through me.

Then, there were the heart palpitations.  If I got up too quickly or moved too fast, my heart would take off, beating so hard and so fast and it felt like it would come out of my chest.  My whole body felt like it was being shaken.  And it was very uncomfortable.  All I could do was sit and wait for it to pass.

And the hardest part of the prednisone therapy for me was the emotional and mental games it played.  I was up one minute and down the next.  I'd be ready to take on the world just long enough to find that what I really just wanted was to stay in my own little world.  And stuff would irritate me so easily.  If someone were tapping their foot on the floor, tapping a pencil on a desk, or maybe just humming, simple stuff like that would get under my skin.  I could barely stand it.  This side effect sometimes feels as though it's permanent to a lesser extreme (My husband says that it is definitely permanent!).

Probably the most well known complication of long term use of prednisone is the toil it takes on your bones and joints.  It can lead to osteoporosis.  I periodically have bone density checks now and I still take a Calcium supplement daily.

An annoyance of the actual swallowing of the the prednisone tablet was when the pill wouldn't go down smoothly.  The phrase "swallow a bitter pill" became literal with this one.  Because it was definitely bitter and not a medication you would want to linger on your tongue.  It was a chalky pill with no outer coating, and it would start dissolving upon contact with my tongue and would taste
awful.

I know the benefits to prednisone use can sometimes outweigh the risks.  It gave me temporary relief of my symptoms and bought time for my doctor to provide me as much help as possible.  But I pray to never have to take anything like it again.

Beginning Life with a Diagnosis

Ulcerative Colitis: what in the world is that?  And what am I going to face next?

It's part of the Inflammatory Bowel Disease (IBD) family.  The Crohn's and Colitis Foundation (crohnscolitisfoundation.org) defines Ulcerative Colitis as"...a chronic disease of the large intestine, also know as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores or ulcers that produce pus and mucous.  The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon."

The results of my colonoscopy appeared to show inflammation solely in my large intestine.  However, the doctor was never 100% sure and would say at times that it could be Crohn's Disease (which can occur anywhere in the digestive tract).  With my inflammation in the colon, Ulcerative Colitis must have been the most obvious diagnosis.

So, with that, it was time to work on treatment.  And that started with a hospital admittance.  Yet another first time experience for my life.  Now the reason for being here was awful of course.  But all of that attention I was getting was nice (for a time).  There was medical staff checking in on me all of the time.  Some friends and family would come by (with gifts, too; who doesn't like gifts?)  And my mom never left the hospital, so there was one on one time there which is good when you feel like...poo!

The prior paragraph listed "highlights" of a hospital stay.  But lets face it...it's a hospital stay; where you're supposed to rest, right?  Well, actually I think I got woken up all day and night to take medicine, get lab work done, and have my vital signs taken.  Plus, with my sickly colon, I had to continue with the frequent trips to the bathroom.

And I had a new "friend".  We'll call her IV.  I'm sure you've met her.  IV tried to be helpful.  She gave me fluids to keep me hydrated.  And she gave me continuous doses of medicine which went directly in a vein and into my bloodstream for quicker action.  But was she ever awkward!  Tall and top heavy with big feet to match.  And IV followed me around EVERYWHERE.  She could be so ungraceful, starting off in a different direction than the one I was going in.  Oh, and the beeping!  Lets add annoying to her characteristics.  She beeped when she was hungry, so the nurses pacified her for a few minutes until they could get the proper liquids for her.  IV would beep when her access line got pinched.  (Excuse me for bending my arm when I'm sleeping.)  And don't leave her unplugged too long.  Hopefully, my trips to the bathroom wouldn't be too extensive.  (Okay, that last part may have been an exaggeration.  But she made sure everyone knew she was there.)

And sometimes I felt like a pincushion.  At one point (when I actually managed to fall asleep) my IV site had blown.  The fluid that should have been going into my vein was now going into my arm itself and had caused it to swell significantly and was very cold to the touch. My mom held her arm up to mine (to a 104 sickly pound body), and our arms were close to the same size.  So I painstakingly got a new IV put in.  The nurse left the tourniquet on for several minutes before actually sticking me.  (Ouch!)  And then, when she did stick my arm, she missed.  Twice.  (Double ouch!)  By this time, my lab work was due again.  Thank goodness those folks stick people all of the time.  I managed to get a new IV access.  

The food was great, too.  Not really.  And no complaints to the chefs.  But it was jello and broth for the most part.  I was really hungry though so they were better than nothing.  It just took a while before my body was grateful.  

Then there was another first: oral medications via capsules and tablets.  I'd never so much as taken a Tylenol before.  But before I could go home, I had to learn how to take these pills.  The staff and my parents were coaxing me on, offering tips like putting it the capsule on the back of my tongue and swallowing.  I just knew I'd choke.  Then suddenly I did it.  One pill at a time.  And again the next dose and so on.  Now I can take multiple pills at one time, and it doesn't even phase me.  So I was proud of this hill I had climbed.

  

Then, there is one medication that's like a devil in disguise.  Some of you can guess which it is.  Stay tuned!

You Want Me to Put That Where?

Much of the time at Vanderbilt Children's Hospital seems like a dream (not to the nightmare extreme but definitely not butterflies and daisies).  I had found myself in yet another place and position that I had never been in before: in a hospital as a patient with needs far more serious than my 14 year old self could understand.  It felt as though I had entered another world. (And before long, thanks to anesthesia, I really would be.)  I had no idea what I was about to face.

We met the doctor.  I can't recall actually speaking to her myself.  I just remember that question she asked me that I brought up in the previous blog post: why didn't I tell anyone?  That question has stayed with me all of these years.  And, at times, I find myself still wondering why I didn't tell anyone.  I didn't have an answer for her.

I met what seemed like hundreds more medical personnel as my mind was spinning taking in the unfamiliar sounds and scenery and with the various bits of instruction and information I was getting.

I'm sure there were other tests at this initial visit, like more lab work, but the only one that stood out was the dreaded COLONOSCOPY. Only, I didn't yet realize that the actual procedure was the easy part.  And even more, the "cleaning out" process they wanted me to do was a walk in the park compared to future colonoscopies to come.

They handed me an enema and told me where to insert it and all the other info one needs for this liquid.  But here's how in the dark I was; I got stuck on the part of where to insert it.  They wanted me to stick it where?  No literally.  I don't understand.  However, when they asked me if I understood, I said yes.  (Sad I know.  Naïve I tell ya!)  I'm fairly certain I didn't get what an enema was for either.

If they said, it had already went in and out of my completely overwhelmed brain.  I took my time and made the attempt to use this foreign object.  And I came out a failure.  But no worries.  They knew exactly what to do.  The foreign object turned out to be "Drano" for the intestines.  They want you to hold this powerful liquid inside for a certain period of time so it can really do some work.  Not happening!

For the life of me I can't understand why I needed the stuff.  Oh, I'm sure it's standard procedure for an "unprepped" person.  But what none of them could see was how often my body was cleaning itself out: before, during, after meals and many times in between.

I made it through the prep and was set up for the actual colonoscopy.  Did I mention this would be my first IV experience?  (Like I said-life changing.)  It wasn't traumatic for me, although I can imagine the fear of the one trying to find a vein on a dehydrated being as I must have been.  But it was managed because next came the good stuff: medicine that makes you go to sleep and get the best sleep possible.

There was one hiccup here though (and the only time I've had this happen).  Eventually, they must let up on the administering of the medication as they want you to wake up and get back to the real world after the procedure is over.  And I believe they let up too soon on me because before it was over, before making all the sharp turns, I could feel the pain involved that makes you understand why this medicine is given.  I tried to say something, do something, but there was just enough medication to keep my motor skills temporarily paralyzed.  Once I regained enough consciousness to speak, I voiced my concern.  Now I can't remember what the resolution was, but like I said, this was the only time I've experienced this. 

Where were my parents during all of this?  I couldn't say, although I doubt they were far away.  But once I was awake, they were there.  And we got an answer to the daunting question of what was going on . On February 16, 2001, I was diagnosed with Ulcerative Colitis.  How can that be when your blogsite is clearly titled "Crushing Life with Crohn's"?  That part of the story will come later.

Although it was a relief to finally have a diagnosis, the relief wouldn't last.  Here started the beginning of an up and down battle with physical, emotional, and spiritual health.

The Beginning: when Crohn's Disease changed my life

Happy Fourth of July to all!  Feel free to comment and share this post! And don't forget to follow me on Twitter: @CrushingCrohnie. With this second post, I want to go back to where my Crohn's journey began:

Although, I can't remember the exact day the symptoms began, I do remember it was in November 2000.  And I remember it changing my life.  I was 14 years old, a freshman in high school and trying to find my way in that stage of life.

It seemed as though, one day, I was eating and drinking the things I liked and wanted without repercussions.  Then suddenly that ease was gone.  I would eat something and quickly, my stomach would be in pain, and I'd have to, even more quickly, run to the restroom.  I would drink something, and it could just be water, and I'd have the same experience.  To be more graphic, (here's the warning for those with weaker stomachs to jump to the next paragraph) the stomach aches were followed up by bouts with bloody diarrhea. Of course this wasn't just limited to food and drink consumption but more of an off and on all day battle.

At this point, I'm not sure what I was thinking besides this whole situation was hampering my life.  I didn't want to go anywhere due to my frequent need for the restroom.  I felt terrible from the pain.  And I was getting weaker and thinner.  I was practically starving because food wasn't staying in my body long enough to provide nourishment.  Plus, I didn't really want to eat or drink if I was just going to be in pain.  But I still can't understand why I didn't find this to be an issue to tell my parents about.  I remember the doctor asking me that-why didn't I tell anyone?  I don't know.

Maybe it just had to do with a very naïve way of thinking about mortality. I mean, the worst illness I had ever had was probably strep throat or a stomach virus. (And now it seemed I had a 24 /7 stomach virus minus the vomiting, thank goodness.)  I'd never had a broken bone.  Although, I did bust my lip on wooden gymnasium bleachers when I was 9 or 10 years old (sporting oral braces), and as you might guess, I needed stitches.  So me being sick and affected by an issue that wasn't going away in a few days...that didn't dawn on me as something that could happen.

So if I didn't tell my parents that things seemed to be amiss, that my body seemed to have something against me, how did they ever find out?  It was one day in February 2001, and I was getting out of the shower, and my mom came into the bathroom.  She told me I looked like I was anorexic.  At this point, I'm sure I had some concern with self image as all teenage girls manage to have, but to the point that I would do self harm?  I wasn't to that point. 

And I believe my parents had noticed my frequent trips to the bathroom.  But maybe they were naïve, too.  They had three healthy children up to this point.  One of them could be seriously ill?  Surely not.  But after seeing a pale skeleton of a daughter and asking me many questions I'm sure, it was off to the doctor for me.  There were more questions and the beginning of many tests, and I believe my first set of lab work (that I was aware of).  So that was scary.  Of course, that was only the beginning. 

It seems like the lab work results came back very quickly and that the medical provider we saw had  hunch that what we were dealing with was going to be bigger than she could take care of.  The word Leukemia may have been spoken, because even though I wasn't sure what it was, I was scared I might have it.

The results showed that I didn't have much blood to pump through my body.  My blood count was way too low.  My parents were advised to send me to Vanderbilt Children's Hospital by ambulance stating a papercut could be serious.  (Who knew all of that schoolwork could be dangerous?  Just kidding.)  However, my parents felt it would be best if they drove me there.  As stated earlier, I had never been through anything that sent me to a medical facility beyond a general practioner's office.  They felt that an ambulance ride would be too much for me to deal with.  (At this point, the aforementioned papercut statement wasn't mentioned.)  So off to Vanderbilt we went... To be continued!