Caryn Conquering Crohn's

Just when I thought I have been dealt every kind of hand this disease can throw at you, I manage to hit the jackpot.  But is this the jackpot I really want to win?  Is this jackpot exactly what I need?  It is not black and white.  It is not simple.  

Usually I am very reluctant to answer a phone call from a number I am not familiar with, especially a number that is out of state.  I picked it up anyway and that is where this really begins.  A nurse introduces herself as working for Dr. Burt, the man that is using stem cell transplants as a form of treatment to put autoimmune diseases in remission for good.  I am immediately very thrilled to be told I am in fact qualified for a stem cell transplant.  She begins to tell me about the information she is sending me and my initial feelings of being thrilled was met with me feeling terrified and very confused.

“The chemo you will receive prior to the transplant will cause hair loss,” she explained.  I immediately say, “well that is a small price to pay.”  She goes on, “The chemo also holds a risk of infertility.”  My heart dropped.  This was the first time I even thought of ONE reason I should reconsider.  She was still talking as I  was thinking of my future.  I never imagined myself not being a mother one day.  I knew very early on in life that I was going to have kids some day. This was another moment where I had a first.  The first realization that just because it was what I planned on, didn’t mean it would happen.  

I am still partially listening when she tells me about the option of freezing my eggs.  That is when I snap back to what she was saying.  Freezing my eggs? She made it sound like it was a normal conversation to be having with a 28 year old.  I never imagined the decisions I would be faced with.  I have been through hell with this disease and had thought nothing could top my darkest moments.  I think back to the 16 year old me that day I learned of my diagnosis.  That 16 year old me had no clue what I was going to be faced with over the years.  

Right now I am trying to educate myself to make the best informed and educated decision that would be best for me.  I can’t say what my decision will end up being, but I do know I will be putting serious thought into this.  I know one thing, this will either be the best decision of my life or the worst decision of my life.  

You may have or may have not noticed that during 2015 I took a major step back in writing many blogs despite my many hospitalizations.  I clearly had so much to blog about, but the truth is….It was difficult to talk about and really difficult to even think about without the anxiety of how this disease was altering my life.  I was in fact dealing with paralyzing anxiety and depression. I refuse to let this disease take control of me but last year, the disease did in fact take control of everything.

This day last year I was in the 5th day of that first 2015 hospitalization.  I ended up being hospitalized 11/12 days during that hospitalization.  I didn’t realize it then, but that was the start of the beginning of one of the worst year of this Crohn’s diagnosis (although my first 1-2 years were harder in other aspects).  Over the course of the first half of 2015 I was hospitalized a total of 3 times.  Despite the treatments I just wasn’t getting better.  It was terrifying, but I have dealt with many major Crohn’s flares before.  I didn’t know just how bad things were going to get. 

In the second to last day in June this spiraled out of control.  I was getting infection after infection which was only causing the disease to spiral in further out of control.  I was tired of being hospitalized.  So when I wasn’t getting better from an infection that I was being treated for, I tried to ignore it.  I didn’t (even as a nurse) realize what harm I was doing - I just did not want to continuously be that person constantly in the hospital.  That decision put me in one of the scariest moments of my life.  I had taken many days off from work and often called out and even though that day in June I felt terrible I wasn’t going to call out.  That decision….again, put me through a very scary situation.

I had just got back from lunch with my mom, sister and niece (after leaving early from lunch) and got ready for work.  I felt the fatigue and all the other red flags, but I chose to ignore it.  Not long after I got dressed for work I experienced a feeling of doom.  I knew something was wrong.  The last thing I remember was calling my mom out of desperation letting her know something was wrong.  I later woke up to my mom on the phone with 911 and my neighbor who is a first aide volunteer at my side.  Long story short - I was septic.  I ended up passing out and later found out just how high my WBC was.  I learned a valuable lesson.  

-You KNOW YOUR body

- Don’t be concerned about those who are judgmental of something they do not understand because they do not live it.

- Stop being ashamed of seeking medical help

and…..you can’t care for others unless you take care of yourself FIRST.  YOU MUST BE SELFISH.  When it comes to your health, BE SELFISH.  It can most certainly be a life or death situation and I learned that the hard way.  Even nurses need that reminder from time to time.

After this hospitalization I was hospitalized another 4 times (in 2015 I was hospitalized a total of 8 times - 10 times if you count my hospitalization in July 2014 and my most recent one January 2016).  Each time I was hospitalized I was needing so much time from work that eventually after my November hospitalization I realized I needed to take a medical leave of absence.  I thought at the time I would need a few weeks.  A few weeks turned into nearly 11, almost 12 weeks.  

How I spent most of my time off when I was not hospitalized was nothing I would wish on anyone.  Some days I didn’t bother getting out of my PJs, some days I rarely ate, some days I binge watched shows, some days I barely moved from the couch and all those days…I kept silent on just how I was really feeling. 

I was upset, depressed and anxious because this disease was taking a part of my freedom and forced me to put my life goals and plans on hold.  I didn’t see the light at the end of the tunnel.  I was frustrated.  I was frustrated with the disease, the doctors, my family, my friends, my financial situation and I was frustrated at how at times it affected my relationship with my boyfriend.  I begged doctors to just get me better.  I was in physical pain, I wanted that pain to go away.  It is hard having a chronic disease where pain is a very common symptom and living in a world where you are judged on you medical history.  Pain medication do not fix this disease, I know this.  I expressed this.  But at times medical professionals are so concerned about their hard earned license (rightfully so) that they under managed that aspect of this disease.  This lead to anxiety and depression.  Imagine flaring with a painful disease and treatments are not working fast enough and having to be tough and suck up the pain in fear of medical professionals putting a dangerous label on you.  

There were days I was so depressed I didn’t know how I could possibly move on in my life.  I wasn’t going to kill myself, but I did not want to live the way I was living.  At times I wanted to throw all my medications away.  I didn’t, THANK GOD, but I was going through a difficult time.  

I knew I eventually had to reach out and I did.  I talked to my therapist.  I talked to my friends.  I talked to my parents.  I talked to my boyfriend.  I even made the decision to go back on an antidepressant (a medication I had stopped as I thought it wasn't helping me).  Physically I was exhausted and the only way I was going to deal with the physical aspect of this disease was if I had dealt with the emotional and mental side of this disease.  It was hard and it still is hard to talk about, but this was and will be my reality (maybe not everyday or every year, but it will be something I will have to work on and deal with daily).

2015 taught me so much about myself and those who I surrounded myself with.  I learned to be honest, speak up, face my demons and to never give up. I learned that the people around me are important.  I learned who I could reach out to and those who really cared.  

I returned to work on February 5th, 2016 and I could not be any happier than I am now.  I am not 100% just yet, but I am 100% ready to move forward with my life, my goals and my dreams.  I learned that I don’t always need to live up to the countless people who tell me how inspiring I am and that sometimes I will fall apart and that is okay.  

This life of living with a chronic disease may bring some really harsh and rough moments in my life, but it will never beat me.  I have a 100% success rate of getting back on my feet after feeling defeated and broken.  2015 was not what I expected, however it helped me to change lives (of both mine and others) and I learned just how to fight back and through that I learned countless lessons.  

Chances are you know somebody living with a chronic illness.  It might be a friend, family member, coworker and everything in between.  After living with Crohn’s disease for 12 years I realized often times those who once were close to me (us) were closed off from me (us) after my diagnosis and through some really hard times where I needed them the most.  I also realized it can because there are times when people do not know what to do for their loved one.  

With that said, here are ways to help your family member, friend, co-woker or anyone else you care about who is living with a chronic illness . . .

( 1 ) Be Present

This might sound odd, but just hear me out.  You don’t have to be physically present when being present for those with chronic illnesses.  A simple call or even a text message are ways of being present. When a person feels like they are going through it alone, it can be devastating to how they are able to cope. So be present, it can change the whole process and the key to coping with these type of diseases.  

( 2 ) Just Listen

We know you can’t fix us.  We are not asking you to do so.  If we vent, talk, cry…..its simple - JUST LISTEN.  We could have held whatever we were feeling in for months and even years.  You aren’t going to fix what we are going through, but it is ALWAYS beneficial when you just listen to our worries and fears.  

( 3 ) Become Educated

I am not saying you need to be an expert on the chronic illness your loved one is being faced with. I am also not asking you to go read very complicated medical articles.  A basic understanding of the disease is extremely helpful.  

( 4 ) Ask Questions

It is not an interview and the moment does have to be right when asking certain questions.  There are also no dumb questions…..just people (KIDDING - okay, maybe I am not kidding on that last part, LMAO).  However, the fact that you are even expressing interest makes those with chronic diseases know that they are very much loved and cared about.  Just don’t get offend when your question is if I am contagious and I start coughing on you…..<---perhaps I went too far with that one, but you get the point.  

( 5 ) How does that saying go?  If you assume, you make an ass out of me and an ass out of you??  Don’t Assume.

Yeah, we may have days where things are really difficult and rough.  But don’t assume we feel better about being spared the question of a night of going out to have fun.  Sometimes I can’t, but on the days I can…it would have been nice to receive an invitation either way.  Give us the option of making that decision.  

( 6 ) But You Don’t Look Sick Remarks

So you saw me at the mall in a full face of makeup, so I must not ever actually be “that” sick.  We can have decent days ya know!  Being chronically ill doesn’t mean I'm chronically stuck in my house and gave up on wanting to look good when I do go out.  Chances are the moment I get home, I am right back in my PJs…but for those few hours I was out, I just wanted to BE and LOOk normal.  

( 7 ) Don’t make us feel like we want to be sick

So your aunts, sisters, best friends brother “cured” themselves of this very well known incurable disease… Try to instead use the word “remission” instead and I will listen and perhaps look up medical articles of it, if it does exist as a way to obtain a true remission.  

( 8 ) Offer Support, Not Medical Advice

Medical advice is something we speak to our doctors about, we don’t need a person close to us to give us that.  Ask if there is something you might be able to do for them.  Picking up groceries, running errands and even prepping meals (be sure the meals are something they can have however) is a great way of offering support - and there are so many others ways of being supportive in this way.  Sometimes our energy levels are low during the most difficult times, any help to make things easier is ALWAYS appreciated.  

( 9 ) Love us during the good and bad times

We will have highs and lows and it will at times be hard for loved ones to deal with those lows, but also don’t forget about us at our highs either.  Living with a chronic disease can bring out the best and the worst in us, love us for it anyways.  .  .

I have been thinking about a certain blog post I wanted to post for about a week now.  I want my blog too be 100% honest and true to who I am as a Crohn’s patient AND advocate.  With that said, my thoughts and feelings are very much real when I write anything on my blogs.  2015 has been a difficult year for me in regards to my health that caused other aspects of my life to spiral out of control as well.  Sometimes I am completely lost.  Sometimes I have a need and want to just give up.  ANXIETY.  DEPRESSION.  These two things are often hard for people with a chronic disease to admit to.  But as someone who has been there….YES,  anxiety and depression almost always occurs in a person with a chronic disease.  

About a week ago ( I had this feeling overcome me twice or three other times in my life, two of which were this year) at 2am I woke my mother up as I sobbed.  I am doing everything I feel I need to do to get better.  I am looking at every angle and all my options.  But yet I still feel at times it is best to just give up and that is exactly what I told my mom about a week ago at two in the morning.  I wasn’t sleeping well recently and I have had a lot of pressure from others about what they think I should be doing (please be mindful that these others are people who really care about me).  

When i was diagnosed 12 years ago I never imagined a time where I thought I might want to give up.  After all, there are many treatment options today, but at my last hospitalization it was very difficult to be sitting in my hospital bed and hear the doctors uttering that my options are running out.  I am 28 years old.  How is it that my body is rejecting medications that often help so many others. It is very frightening.  I postponed this blog post because I want to stay positive, but right now I am going through a really difficult time.  Like I said in the beginning of this post.  I want this blog to be 100% truthful and that entails saying, “Sometimes I feel like giving up.” It is not exactly a positive attitude, but it is a real and true feeling that I sometimes have.  The day the doctors told me my options were running out - it broke me completely.  I do eventually get out of that mindset, but every time I am facing many steps back….those feelings of giving up reemerge. Those feelings are associated with depression, but I do feel it is a much different depression than those without a chronic illness without a cure.  

I was admitted to this hospital in December and spent 10 days there.  My doctor was not in the state, so I was assigned another GI.  This proved to be a huge issue as the doctors do not know me.  My care while hospitalized was highly effected by this and nothing really got done while I was there except to rule out scar tissue causing an obstruction and giving me 10 bags of IV potassium that had I not had, could have killed me.  For those who don’t know - Potassium is very important.  Too low or too high, it can kill you.  So in a way, yes I was getting stabilized, but I wasn’t getting the answers I needed to stop this flare.  This might sound very dumb to some, but to me I wanted more because I am so tired of living my life this way because I do know that my life doesn’t have to be like this.  7 hospitalizations in one year is overwhelming to say the least.  It brought me to wanting to give up.  I won’t lie - some days I still do.  

Today I got my Entyvio infusion that I was getting every 8 weeks and I will now be getting them every 4 weeks.  This was an option and even though I am not sure it will work…IT’S AN OPTION!  So I made the decision to go ahead with this and as I sat getting my infusion today I found myself thinking to myself wondering if this is going to be the answer.  I want it so badly to be.  I want to take back control over my life.  I want to take leaps forwards instead of those huge leaps backwards.  I know for many, if not all, reading this will paint a picture of me than maybe you didn’t know.  However, I started this blog to put my journey out there and it has to be 100% HONEST.  I would be a terrible advocate if I didn’t share this with those who are perhaps facing the same challenges.  Just because the day you were diagnosed with this disease and not given the memo about these extremely hard times doesn’t mean you won’t face it.  I said it before and I will say it again…These emotions are real and validated.  I won’t lie - I spent time seeing Facebook friends that I went to high school with so ahead of me and I at times wonder if I will ever catch up.  I want a healthy life so I can do all the things my peers have done already, not because your are “suppose” to but because I WANT TO!  Again, this may come across as being self-absorbed and some may even think, “seriously, she's complaining about her situation when it could be so much worse?”  Guess what?  I feel the same way and this is why I struggled with this blog post.  But at the end of the day I am my own worst critic.  

With all of this said…I am going to fight through the bad days and embrace all the good days.  It might take a while to get better and to where I need to be to live my life the way I imagined it, but I will get there.  If one day the options to treat this disease are no longer available to me, well, I will deal with that when I need to.  But I did have a conversation with my family about what I want when this might happen and even have an advance directive being put in place so that my wishes will be honored.  Today though, I will fight.  I am not going to give up until I exhausted every last option out there no matter how frustrating it might be at times.  

I use to consider myself an advocate of this disease, but this past year I sort of couldn’t put in the effort I use to put into it all.  When I started this blog, it would be shared and I would get messages from anywhere from young newly diagnosed girls, to people who had this disease for as long as I lived and they would express just how much they could relate to what I was writing.  Writing for me is an outlet, I don’t always even write for others to even read it (trust me, I have a lot of saved post that I have yet to post…maybe in time I can share those).  But this isn’t just for me anymore.  

I realize my blog and what I have shared here has helped people because they have expressed that to me.  So I am trying to get back to writing.  To give people with this disease that hope, even in the most darkest moments of their life with this awful disease.  I am an advocate, I know I helped others (and believe me, countless others have helped me) and I want to continue to do that.  

Yesterday was my 10 year HS reunion.  It was my Junior year of HS when I was actually diagnosed with this disease - but I had it so much longer.  I was hospitalized a lot of last two years of HS.  I was home schooled as well from time to time.  I was pretty much a disappearing act.  One person I went to HS with that I knew, but was not close to told me she reads every single one of my blog post.  Does she have Crohn’s? NO!  When she mentioned Camp Oasis, I KNEW she wasn’t just saying she read it, she actually reads my blog post.  THIS is where advocating and awareness starts.  I realized in that moment that I need to start writing again.  Even when it is incredibly hard to do so because there are painful and difficult moments that I do share.  I share it as a advocate.  I share it as a person living and breathing this disease every day of my life.  I share it for the others who don’t feel they have a voice. 

Sunday, November 22nd of this year (YES LAST WEEK) at 7am I headed to the ER.  I knew to pack a few things because I pretty much know at this point when I will be admitted and when I won't need to be (example: sometimes I just need fluids, sometimes it is that simple).  Other times it is not that simple.  I was admitted and it never ever gets easier.  However, I would be more concerned if it did become easier.  I did use to cry every time, but I don’t as much  anymore…crying doesn’t change the situation, but sometimes one 5 minute cry is just enough  to get through it.  It is never poor me, or why me, or I wish I never had this disease.  

This might sound COMPLETELY weird but I believe 100% that what you go through in life is meant to happen for a reason.  Everyone goes through tough times and as the saying goes, “You can’t have the rainbow, without dealing with the rain first.”  So this is my rain, my storm, my reason in life.  Listen, I would have never become a nurse if I never had this disease and I love my job so much.  I can’t ever express that enough.  I have met amazing people, this I certainly could never express in words.  So how could I ever say poor me or why me (I will say this though, I am human, so I have had those moments, I just try not to stay in that mindset too long).  It brought so many positive and rewarding moments in my life.  

This hospital stay was a short one, but I hate admitting that it wasn’t short because I suddenly got better.  I had a treatment that was super important at a different hospital and an appointment with my second opinion GI (my local GI has me see this doctor as at times she fully admits she is out of her comfort zone).  So I was discharged on day 3 on tuesday November 24th just so I could make my appointments and IV Infusion therapy (entyvio) the next day.  I also have something else health wise going on that I am waiting to share with everyone.  I am holding onto hope that the doctor might be wrong, but I am mentally preparing myself for whatever the results might be.  I don’t want another diagnosis, but someone very close to me told me in so many words that it would be bittersweet.  Getting a diagnosis means they can help treat that diagnosis, but at the same time….I DONT WANT ANOTHER DIAGNOSIS.  Like I said, I am still trying to wrap my mind around this one, so forgive me for being conflicted on how I feel about it.  

After my IV infusion of Entyvio I saw one of the best GI doctor in the state of NJ.  We came up with a game plan.  A lot of  these decisions were mine, but the doctor 100% agreed with a lot of what I said (do I get my MD now, LOL).  I am a very educated patient, partly due to my education as a nurse, but I also have been living with this disease diagnosed for 12 years now.  I do my own research, I reach out to others who may be able to offer advice and I do my best to not give up.  EVER.  I know one day the hospitalizations, the amount of medications I take, the doctors appointments will slow down.  I know it.  This year has been very difficult however.  But I hold on and reach out to my support system (sometimes I wait a bit longer than I should have) and I go about trying to live a normal life.  There is no giving up. Not even when I am under stress due to the countless medical bills or dealing with anything this disease throws at me.  

I want to and will continue to write my blog post.  I love when people reach out to me because I said something that they fully get. I love when they ask for my advice.  I will continue to share my story in hopes of advocating and spreading awareness for a disease that is rarely understood.  Those Crohn’s commercials…it doesn't even tell you half or even a quarter of what this disease can cause.  And if you think this is just some bathroom disease, please read my other blog post.  I promise you will realize just how wrong you are or were.  

Since July 2014 I have been hospitalized A LOT.  I may have even lost count, but its at least 5 times.  I am and always will be as open as I can about this disease and my struggles, but recently I haven’t been writing much.  I have straight up withdrawn.  It isn’t easy admitting that.  But its been a really crazy roller coaster.  I never know when I may start to get sick again and end up in the hospital.  Its so unpredictable.  But I am sort of learning recently that how I feel right now is okay.  Its okay to sort of take a step back and reevaluate things, but don’t ever take too many steps back.  It can be overwhelming, frustrating and scary at times.  I am trying to come to terms with the fact that its okay to not always be so “strong” or constantly have that brave face.  It’s okay to have moments where you can cry.  Obviously not every day or every minute.  But there is never a moment where I ask why me.  I refuse to.  Not when it could be way worse. Not when I hear about another friend with this disease struggling even more.  Certainly not when someone is reaching out to me.  

I was in the hospital back in July for a few days  I was also in the hospital very recently.  October 16th I started feeling sick.  Classic symptoms.  But I didn’t of to the hospital until the day after that.  I knew when I went into the ER they were going to admit me.   I just had that feeling.  I actually have more questions about what is going on right now than answers, so I won’t really be able to say exactly what made me so sick.  My blood work was awful and it was clear something was going on.  They were treating me for Crohn’s disease until they noticed my liver testing wasn’t good.  We aren’t sure why, but its usually due to a medication but I don’t think I will know more until I follow up with my GI about the next steps.  The only time I cried was on my way to the hospital.  After that I knew crying wasn't going to change anything.   

I have a really great support system but over the years I find it harder to talk about it to these people because I feel like they are likely tired of hearing about it.  I mean, I’m tired of it too but its because Im living with this right now.  I hare admitting how I don’t use my support system.  But this is a reason why I may have seemed quiet, especially when I am hospitalized.  Even for a few weeks I am quiet, but I can’t do this anymore.  It isn’t healthy, so my hope is that I start reaching out more.  I hope to stop beating myself up about the things I can’t control.  Trust me, when you are flaring with Crohn’s you have very little control at times.  I usually beat myself up over this.  

The bravest thing you could ever do is allow others to help you and care for you when you are at your worst.  This is okay.  I learned that no one is expected to go through things like this alone.  I will certainly never walk this journey alone.  

Recently I deal with what I like to call “Doctors who shouldn't be doctors.” Earlier this month I couldn’t eat or drink.  It was so bad that I didn’t eat or drink anything for close to 5 days.  It took my stubborn self that long to go to the ER (of course my boyfriend was the one who made me realize I needed to do something).  I was very sick at that point.  I was starting to get weak.  I was very confused and my thoughts were difficult to communicate out loud.  I went to my neighbor (my parents were away) and asked her to take me to the ER.  However, when she saw me she was too concerned and called 911.  Because of that I had to go to the nearest hospital and not the hospital I usually would go to.  

I felt relief knowing I would get what I needed in the ER and start feeling better, but sadly this is not how things went.  For the first time in my life I lost my faith in doctors.  I have been frustrated in the past with doctors, but this was the first time I felt completely hopeless and defeated.  Earlier in the month I was sent to the ER by my primary as it was suspected I had an infection and needed at least one round of IV antibiotics.  So when she noticed in my chart I had only been there a few weeks prior she came in with a bad attitude. As I stated above I was having trouble communicating exactly what was going on. To give you an idea of just how much trouble I was having:  EVERY ONE in my family and my bf was texting me and I was unable to text anyone back as I was just too sick and too weak and too confused.  I was able to tell the doctor that I suspected it to be Crohn’s related.  She asked some questions and it was taking me a really long time to answer her appropriately.  After 5 minutes she started yelling at me and said, “you are 28 years old and you are in my ER and I am busy. You are old enough to talk to me appropriately.”  My heart sank.  

I started shutting down emotionally after that.  I was unable to tell her that I had not eaten or had anything to drink for just about 5 days.  She never once asked me about my appetite.  Instead she asked me what medication I took to make me so weak and confused.  My heart sank again.  She very clearly thought I was there for the wrong reasons.  I tried so hard to gather my thoughts but I couldn’t and when she left the room I gave up.  

i was in the ER for about 8 hours, maybe 9.  In that time i got one bag of fluids and only saw my doctor twice.  I was also given a mild pain medication.  I was having pain, but it was the fact that I was not eating or drinking that brought me there, yet she failed to ask me that.  I couldn’t advocate for myself and I had no one else to do it for me either.  When I was discharged I actually took a minute before signing the paperwork because I was not treated for what I needed to be treated for.  But I remembered how terribly the ER doctor treated me and I just decided I wanted to go home to be in my own bed.  

This happens a lot to those of us with chronic illnesses, yet it is still not easy to deal with when it does happen to me.  Imagine getting stabbed and going to the ER and all they did was question you on how it was your fault you got stabbed and then only got sent home with a tiny bandaid on a very major wound.  Thats the best way I could describe it.  It was her job as a doctor to dig deeper.  Instead she brushed me off.  No one should have to deal with that, especially when you are so sick.  

Since June I was told all my issues I was having was related to a kidney infection that just wouldn't go away.  I was put on countless antibiotics for weeks.  I waited a long time (although I didn’t exactly call right after I got out of the hospital June) to get an appointment with the urologist.  I went months thinking I had a kidney infection because I was told countless times that was what was wrong with me.  Today I finally had my appointment and I walked in there very relieved to possibly start getting answers.  This time was even more devastating.  

After the doctor looked over my records he informed me that although the initial cultures showed infection, the cultures that took 7 days to get back showed it was not a kidney infection.  NOT A SINGLE DOCTOR TOLD ME THIS.  Even my primary was continuously treating me with antibiotics for a kidney infection and telling me that it was a kidney infection.  I waited so long for that appointment and all he could tell me was, “I can’t help you.”  I looked at him and immediately started getting so upset with him.  His partner was the one who diagnosed me in June.  I was mad that his office failed to tell me this. he then told me I should see a infectious disease doctor and a hematologist since my blood work i had done showed high WBC among other labs that were out of range.  Even though he told me what the next step was, I was so angry it took weeks of dealing with this and then having to start from scratch again with making appointments with doctors to find out was wrong.

I was so upset I said I wanted my copay back.  YES, I actually did that.  I have never done something like that in my life.  But it was unacceptable for them to never tell me that they would be no help.  And the doctor did in fact get my check back for me and I do not feel bad about it.  This was no excuse on their end or on any of the doctors to take that long to inform me.  I wasted many weeks with this major misdiagnosis.  

So tonight I am back at square one.  I still don’t feel 100%.  I know something is wrong but don’t exactly know what just yet.  I always tell people the importance of advocating for yourself and if you can’t make sure someone else can.  So as you read this I hope you learn from me as I don’t want anyone else to lose their faith in doctors as I have recently.  

I read countless times these types of horror stories and I even experienced it myself 11 years ago when I was originally misdiagnosed with Lupus to only find out about 6 months later it was Crohn’s disease and NOT Lupus.  I however never realized this would ever happen to me again.  But it did.  

My advice: ALWAYS seek second opinions and don't always trust the doctors are contacting you with results.  ASK THEM!  Always have someone you trust to be with you during hospital visits, ER visits and regular doctors visits so you have someone for support and to help advocate for you in case you need them.  

Since being diagnosed in 2004 I have faced so many challenges that are related to this disease that have been anything from a fulfilling great experience (example: Camp Oasis) to moments of complete fear and living some of the scariest days of my life.  Well recently I experienced both, but what I really want to focus on in this blog is that scary moment.  The moment that became the eye opener for me, the person who thought certain things could never possibly happen to me. 

This might be long, so bare with me and please read to the end.  My message here is to reach out to those with this disease, to learn from me and also for the many who do not live with a disease like this, to learn a little bit more about the challenges those of us with chronic diseases deal with.  

June 15th to June 20th I was at Camp Oasis like every single year since 2008 volunteering as a cabin counselor and since 2011 volunteering as both a nurse and a cabin counselor.  Usually at camp every year I struggle with my health.  I usually get symptoms while traveling and while I am in a different environment and also eating certain food I wouldn’t normally eat at home (CAMP FOOD, need I say more?).  However this year I felt great at camp.  I played two softball games in the very hot heat and did NOT need medical attention afterwards (I was exhausted, but I was a good kind of exhausted).  I even participated with my cabin during the nature hike.  I HATE the camps nature hiking (No offense Camp Tall Timbers, nothing personal) and I usually get out of it every year but some how I got talked into it and I am glad I did. It was actually fun and interesting and I was surprised by how much my body was able to handle. This was the first year I did not have a single major issue while attending camp. For example, one year I managed to get very dehydrated that the nurses at the camp couldn’t get an IV in me and so I was sent to Winchester Hospital ER about 30 minutes from camp via ambulance.  

The morning of the last day of camp we were super busy packing our campers belongs and our own as well and getting rid of the decorations we used to decorate the cabins.  During this time I was feeling semi okay, but I was zapped of all and any kind of energy.  But once the parents started to arrive to pick up their children I put on a brave face and said good bye to my lovely girls and talked briefly to each of their parents.  Then it was time to say good bye to my Camp Oasis family.  It was so bittersweet as I love Camp and the friends I met, but I also started to desperately feel like I needed to lay in my own bed.  We said our goodbyes, which was hard.

Once my car was packed up I asked my boyfriend Dave to drive back to NJ because I was feeling “tired” (he traveled with me to camp in my car).  About 2 hours into our 4 hour drive I started feeling feverish and had chills and I could tell my joints and muscles were becoming achy.  However I just figured my body was recovering from such a busy, fun but exhausting week.  Once I got home I figured I should check my temp as the aches and pains and sore throat and right sided flank pain I was having was not getting better.  It read 101.4, at this time I figured not bad, so I started a Motrin/tylenol rotation.  However later that night I was started to get vertigo and a headache and none of my other symptoms were any better.  My temp was now 102.8.  I debated going to the ER but figured I would give it at least a day as it could have just been me recovering from camp (camp really does me in, so it was truly a possibility that it was something that simple).  I decided if my fever wasn’t improving by morning I would go to the ER.

Well morning came and it was time for my boyfriend Dave to leave and head back home. Once he left I checked my temperature and it was 101.4 and I was still experiencing all the symptoms.  I decided since the next day was monday I would just wait and go see my Primary doctor.  Monday I saw her and she diagnosed me with strep as well a kidney infection.  She prescribed an antibiotic.  I was taking my medication faithfully as someone with an compromised immune system you can’t exactly mess with that.  But by thursday I have yet to show any improvement.  So I called my primary and let her know that my symptoms were getting worse.  More pain near my kidney, blood in my urine.  She called in another antibiotic and I started taking that.  I seemed puzzled by her reaction as if this really wasn't a big deal.  She knew my history, so I had expected her to send me to the ER.  Thankfully she didn’t (well at the time that is what I was thinking) but it proved later that I should have gone to the ER. 

By Sunday I was still not feeling well, but I figured I should give it more time as I only started the new antibiotic.  I woke up feeling like death but had lunch plans with my sister and niece.  I didn’t want to cancel as Kayleigh is very much aware of when I am not around when she is told I would be, that I am sick.  So I went to lunch.  About half way though this lovely lunch I started to feel terrible.  I had a horrible feeling of the need to go home and lay down. I felt sleepy and was experiencing all those same symptoms. I went home about 20 minutes before they finished up their lunch.  

Since I had work in 3 hours I figured I would get ready for work first then come back upstairs to lay on the couch and set my alarm.  After I was dressed for work I went to stand up and I started experiencing light headedness, vertigo, tunnel vision, I couldn’t keep my thoughts straight, I was clammy, feverish, chills.  I immediately realized something was very, very wrong and I managed to call my mother quickly but was only able to say, “Mom, come home PLEASE NOW. Something is NOT right and I am scared.”  The last thing I remember was trying to get to the stairs to hopefully get closer to the door. I had this weird feeling of something terrible was about to happen. Then I passed out.  When my mom got home she found me at the bottom of my steps in my bedroom and I was unresponsive and unconscious.  My mom then called 911 and thankfully one of my neighbors is a volunteer for the freehold first aide and as soon as the call was made for first aide he came running 4 doors down.  It took them about 3 minutes to wake me up and I did go unconscious again before anyone else arrived.  Once I was able to sort of understand what happened I started crying for my mother because of how terrified I was.  How did this happen to me?  What was wrong with me?  I was a sick, scared and very much terrified of the whole situation.  

Since I was right near my stairs and not able to speak to make any sense there was major confusion as they thought I fell down the stairs.  I knew in my head that it was the kidney infection that likely caused me to pass out, but I had no way of telling them that.  Once they checked my vitals and checked to see if I could wiggle my fingers and toes and other silly test (which isn't so silly because those test can tell them so much) they put me in a chair that was going to be used to get me upstairs and out the front door to the stretcher. 

Once I got to the ER and was able to give the doctor the REAL facts (as in, I didn’t fall down the stairs).   I told the ER doctor about the kidney infection and I let him know I likely hit my head on the wall or the first step as my head was bothering me.  After my labs came back it was determined my WBC was 2.5x higher than normal, which meant I definitely had an infection. I tested positive for both a strep and kidney infection despite the fact that I was in fact taking the antibiotics my doctor had prescribed.  I was then admitted as it was very possible I was septic and I certainly needed IV antibiotics to get better.  

The next day the infectious disease doctor showed up confirming I was in fact septic.  I was put on very strong IV antibiotics (2 types).  I was admitted June28th-July1st.  During this time I struggled greatly as the pain was not always easy to deal with but thankfully I was given pain meds via IV every 3 hours.  YEP, that much pain people.  Usually they don't like giving patients IV narcotics less than 6 hours a part, so if they ordered it for every 3 hours it meant they knew the pain was that bad.  Usually as a Crohn’s patient doctors don’t like prescribing pain medications like that, but at this point keeping me comfortable was more important and in the end there was no issues with me taking the pain medications that often even with having Crohn’s disease. 

I was discharged on the 1st of July and was told to take more time off from work because I needed to rest as much as I could and I was not allowed to lift (my job requires a lot of lifting).  This is never an easy decision to take more time from work, but it was necessary.  My hopes is to turn to work by July 15th the latest after I finish 10 more days of antibiotics at home.  

I am doing semi-okay now, but in my next blog i will discuss how I am doing now, my support system and explain the importance of taking infections seriously when your immune system is compromised due to medications or other reasons.  

FIRST: Preview of my support system

Picture One: Myself and my amazingly awesome boyfriend Dave!

Picture Two: My lovely Camp Oasis ladies and best friends (L->R) Jessie, Shelly, Susan, Jaclyn, Myself and Laura.  Others not in the picture: Taylor, Emily, Heather and many others from Camp Oasis (brain fog - forgive me if I forgot anyone) as well as the MANY (way too many to name) people I have met through Facebook IBD support groups.

Picture Three: My Family (L->R) Myself, My mom Janet, Katie (my future sister in law), my brother Kyle, My Dad Harry, My sister Sheri, My Aunt Jane, My Cousin Brianna.  Others not listed:  WAY TOO MANY TO NAME! LOL

Today, May 19th, is World Inflammatory Bowel Disease (IBD) Day.  I could easily write a blog talking about what this disease is and give you numerous facts, but thats boring and truthfully a person without this disease most likely would have already stopped reading this after 3 sentences of that shenanigans.  

So how do I “celebrate” a day that is created to raise awareness?  I don’t know the answer to that really.  As someone who lives with this disease every day, I don’t exactly need a DAY (or week for CCFA’s version) to spread awareness.  I do participate in these days and weeks dedicated to the Crohn’s and UC community, but I am not too sure how many people I really reach with my efforts.  

These diseases vary from patient to patient.  Some patients get diagnosed and only have one flare and are in remission for the rest of their lives and are able to live a very normal life.  Some patients have periods of flare ups that can last weeks to months to even years and go into remission from time to time. Some patients in this category could have a different kind of living normally.  Then others are diagnosed and never seem to get better and these people often can’t work, go to school or live normal.  Some even pass away….

Alexandria, a beautiful 20 year old who I heard of and learned about through a few Facebook support groups I belong to.  In January 2014 I started following her journey and learned about her organization Beautiful Beyond The Pain.  She was a previous Camp Oasis camper as well as a Camp Oasis cabin counselor.  This inspired her because camp meant so much to her.  It was her family and people she could relate to the most.  I can relate to that, as the people I have met at the Camp Oasis location I attend are now my best friends.  Because of how much camp meant to her, she decided to make an organization that would raise funds to send children and teens with chronic diseases to camps.  

Shortly after this I learned that she (after 8 bowel resections) was not doing so well and she was put on hospice.  Not long after her 20th birthday she shared that she felt she would not be here for her 21st birthday.  On May 14th, 2014, just days shy of her 21st birthday, Alex passed away due to complications of this horrible disease.  I personally did not know her, but I do know her mother and I knew after one conversation with Lorri (Alex’s mom) that Alex’s dream would live on and their organization Beautiful Beyond the Pain would do wonderful things for so many people.  

So on this day, May 19th, I would like to dedicate this blog post in memory of Alex and the lives she has touched.  Please consider making a donation to http://www.beautifulbeyondthepain.org so that Alex’s dream to send these amazing children and teens with chronic diseases to camps like Camp Oasis.

This disease has always been a vicious cycle for me, so it may not come as a surprise to know I was in the hospital……again.  When I went back to work in March I was feeling decent, but slowly I was starting to fall ill again and it was beyond frustrating.  

April 21st I was starting to notice that I had little to no desire to eat.  Looking at food repulsed me (and no, I AM NOT PREGNANT!).  Wednesday I started having a lot of nausea and then thursday I started vomiting and was unable to eat or drink even with nausea medication.  I thought about going to the ER that night but I was hoping if I gave myself one more day I would feel better.  I also knew if I went in with how I was they were likely going to admit me.  It made me sick to my stomach even more so just thinking about being admitted as the last time I was there for 12 days being pumped with loads of IV steroids.  

So I did wait that extra day and on friday I was unable to even move from the recliner in my living room.  My parents had left to go to a wedding out of state so I was on my own with 3 pets to care for.  Crohn’s always had such wonderful timing.  I was very dehydrated and by friday night I knew I really didn’t have a choice.  So I grabbed some things and my purse and off the Jersey Shore University Medical Center I went….vomiting twice on the side of the road on the way there.  

WAIT????  I drove myself to the ER in that condition????

YES, I did.  And before you give me the side eye….My siblings were both too far to either take me or unable to.  ALSO, I wasn’t ready to tell anyone that I was so sick that I was going to the ER again.  The pain and hurt I feel in my heart every time I have to call family or tell friends I am in the hospital is beyond any words.  I know these people worry about me greatly and want me to feel better and when I am not getting better it really weighs on me greatly.  It’s beyond the point of frustration.  It is beyond feeling like a burden.  I also just didn’t want to talk about it.  I feel like I do every thing (and I really mean I do) in my power to get better and live normally that when I am not seeing results, I start to feel very defeated.  Perhaps even depressed.  

After a few hours in the ER I sent a text to my friend Sarah to ask if she could come “hang out” with me.  Without missing a beat she let me know that as soon as her husband was home to take care of their baby she would be right there.  Before I move on….Sarah has always been a friend I could count on whenever I needed someone, no matter what time it was.  

Sarah showed up shortly after and I felt relieved having someone to at least be with me even if at first I didn’t feel as though I wanted anyone there.  Once I saw the doctor (4 hours after being in triage), they gave me IV fluid, IV solu-medrol, and did an X-ray and CT scan.  After all of this around 9am the doctor came in to tell me they wanted to admit me due to my wbc being 19,000….which for those who don’t know is high (normal is 4,000-10,000).  So  there was clearly something going on and since I was still not able to tolerate anything as far as drinking and eating it was apparent to the doctors I should be admitted for that reason alone.

However, when I was told this I was so against being admitted.  So much that I questioned the doctor about why I was being admitted and what exactly they would do for me while being admitted.  I even called my on call GI (who the ER already called) to hear him tell me these things.  Then even after that I was STILL not convinced if it was 100% necessary that I should be admitted.  YES…I know….I was clearly more focused on the medical expenses, missing work and just being stuck in that place more than I was on my health.  

After talking to my admitting doctor, the ER doctor, my GI doctor (one on call) and my friend Sarah….I FINALLY said I would agree to being admitted. 

 Then I realized what I had to do next…..

I had to call my parents.  My mom said, “I saw this coming.”  She had seen how sick I was getting, so it was not a complete surprise to her.  My parents had planned to stay the night in DE after the wedding they were at, but since I was now sick and in the hospital they came home directly after the wedding.  I then told my sister and brother next.  Then I told a FEW close friends who I talk to every day.   

Since I was being hospitalized again I knew I needed to take time off from work (and my doctor agreed).  So I am actually not going back to work until May 26th.  While I was in the hospital they kept me well hydrated.  They also realized that the IV nausea meds I usually do well on was pretty worthless as I was getting no relief from nausea.  They finally put me on a stronger nausea medication which helped me greatly.  Every day I felt a bit better, but I put my phone on silent and tried resting as much as I could given that its not always easy to do so while in the hospital.  I got texts from family and friends but I responded very little.  Not because I was upset with anyone, but because I just needed my rest.  

I got out of the hospital April 27th.  I am feeling better every day although some days are better than others.  I realize I did not talk about this hospitalization much with anyone and truthfully I had a bit of what I call “hospital depression.”  I don’t think I need to define that for anyone as it speaks for itself.  I hate getting like that and I hate appearing weak, but I was feeling so defeated and just wanted to be healthy and was tired of this disease/being sick causing me to not be able to work.  

This past weekend (May 7th - May 10th) I felt well enough to go away to MA and see a friend.  I was pleasantly surprised with how well I felt.  I did feel tired and maybe had a few minor issues, but overall it was a very nice trip and felt good to get away for a bit.  I am looking forward to going back to work and also looking even more forward to going to Camp Oasis in WV in June! 

Sometimes I am quiet, which I had been recently and I always tell people when I am quiet…WORRY.  Those are the times I am usually not doing so well.  Thankfully as I start to get better I am starting to feel more like myself (as evidence by not shutting up, lol).  

***Side NOTE:  As you may know, being in the hospital again means I have more medical bills.  if you would like to make a donation to my medical fund please visit this site: 

http://www.gofundme.com/CarynsMedicalFund

When I was 15 years old I had no idea what I wanted to be when I grew up.  I thought about it from time to time, but being a nurse was never once a thought in my mind.  Besides science was not exactly something I tended to do well in, in high school.  

A few months before I turned 16 I started having a lot of health related GI issues.  However, I since I was 16 and a girl I was not very forthcoming with my parents and doctors about certain symptoms.  It was embarrassing.  Like any illness though there was a moment of “I can’t hide this anymore.”  After many months testing and a few misdiagnoses I was diagnosed with Crohn’s disease.  It was this disease and everything that came with living with this disease that led me to my decision of wanting to become a nurse.  

The first two years after my diagnosis was filled with many long hospitals stays and experiences I wouldn’t wish on my worse enemy.  Through these ER visits and long hospital stays I developed relationships with my nurses and it was because of those nurses that I was able to get through those really tough moments.  They had a major impact on my life and I will never forget those nurses.  

Now, 11 years later I am a Licensed Practical Nurse (LPN) and currently enrolled in an RN program.  I feel my experiences as a patient has really helped me along my journey of becoming and being the nurse I am today.  Being a nurse with a chronic disease definitely has its many challenges, but I would not change it for anything.  

I currently work as a pediatric home care nurse and I love every minute of it.  I am very passionate about my job and what I do.  My goal and dream as a nurse is to one day work with children and teens with IBD as I feel being a nurse with IBD gives me the experiences to help other young children who are living with this disease.  IBD is a silent and often misunderstood disease that even medical professionals do not quite understand.  I have in fact been that patient sitting in the hospital bed feeling defeated and frustrated with the professionals who are suppose to be helping me.  I am hoping to one day be a voice for the young IBD community as they are the least likely to have to tools to advocate for themselves, especially the newly diagnosed.  

Although the last 11 years has brought me through hell and back, I still see the silver lining.  I wouldn’t be who I am today.  I wouldn’t be a nurse today.  I wouldn’t be the compassionate and driven person I am.  There were times I wondered if it were even possible for me to get through nursing school.  There were times I fell to my knees in complete frustration asking, “why me?”  I had a traumatic, but significant experience in which I thought this disease was going to kill me and I was at peace with death in that moment.  I have seen rock bottom, but those rock bottom moments brought me to here.  It brought me to some of the most amazing people who I now call my best friends.  

I am not typically the type of person who listens to a song and ever really connects in a way that those who love music would connect.  But that recently changed.  The song is called Tiny Hearts by Kimberly Henderson. 

(If you are asking who is this...LINK http://www.huffingtonpost.com/2015/01/15/kimberly-henderson-tiny-hearts_n_6465678.html).  

The really interesting part is that when I listen to the song I understand her story and message, but our paths are very different.  The song is about her having to grow up super fast when she had a child at 16 years old.  Obviously I am not and was never a teen mom, so how could I connect to this song so much?

The message is why I connected so deeply.  The message of this song for me is about facing your life and the cards you have been dealt head on.  It is about taking ownership.  It is about realizing that even though your future may be going down a much more difficult path, it doesn't mean you give up.  You find that silver lining, embrace it and realize that things are happening this way for a reason.  It is about going through struggles, yet coming out in the end saying, "I wouldn't go back and change it if I could." It's about finding the best parts of you in those times of struggles. It's about overcoming hardships and becoming the best version of yourself.  It is saying, I have been through this, but I know who I am because of it.  

Before I got sick I had no worries in the world.  But when I started getting very sick at 15 years old, my whole ENTIRE world changed.  What type of life will I live with my diagnosis?  Will I be able to go to college? I didn't really know what I wanted to do with my life, but the idea of my choices growing slimmer terrified me.  I could go on and on about the questions that came to mind when I got diagnosed.  It was terrifying, it was a falling to your knees because you are so overcome by the emotional pain kind of thing.  For good reason.  There was a time I was so sick and overcome with physical pain that I thought I was dying and sadly in that moment I was very much at peace with death. 

Being a sick teenager was very difficult.  My friends and peers either did not understand it or just simply didn't care.  I often had to cancel plans due to being in the hospital or just because I was too sick to leave the house.  I often sat there watching all my friends have all this fun while I was going through something none of them could ever possibly understand.  They stop reaching out because your lives are so different.  That was probably the hardest part.  

I spent a lot of time in the hospital my Junior and Senior year of High School.  During this time I had some amazing nurses.  These nurses inspired me greatly.  It wasn't long after my first few times in the hospital I decided I wanted to be a nurse.  I would have never even though of becoming a nurse had I been healthy.  My diagnosis helped me figure out what I wanted to do with the rest of my life.  My diagnosis gave me a greater purpose.  This disease may suck (A LOT) but finding my purpose through this diagnosis has allowed me to become who I am today.  

Once I decided I wanted to be a nurse I knew I had to deal with my struggles head on.  It meant taking care of myself.  So I did just that and made no excuses for it.  I had to make a decision to attend community college instead of a regular 4 year school.  I had to accept that this may not have been the way I pictured myself achieving my dreams, but it would eventually lead me there.  I attended community college for 3 years but struggled greatly since i had been so sick.  Each time I had to take two steps back and I felt very defeated because of that.

But after living with this disease for over 11 years I have learned to find the silver lining, embrace it and own it.  (Please read my other blogs to get a better idea of the struggles I have been faced with).  I decided I wanted to become a nurse, I took the steps to do just that and when things got rough I never ran away from it.  Instead, I got right back up.  

If plan A does not work, their is always Plan B.  This was no exception.  Despite it all I did end up becoming a nurse in 2010.  I began working as a pediatric home care nurse and this was my purpose.  My disease brought me to this point in my life.  I would not change being diagnosed with this disease.  I have become a person I can be proud of.  I simply, know who I am.  

Kimberly Henderson wrote this song about being a young mother and why the challenges that came with it didn't matter in the end.  For her, all of that was worth it because her children are her purpose. But she can still go after her dreams. I connected with this song as a young adult living with a chronic disease.  My late childhood was robbed of.  My future I had envisioned pre-diagnosis was no longer a path I could go down.  But it didn't matter.  Through this disease I found my purpose.  The tiny hearts Kimberly Henderson holds onto is her children.  The tiny hearts for me is my purpose in nursing and the  young patients I care for.    

I can never express in words the way Crohn's has fully impacted my life.  A lot of people would have a list of so many negative experiences.  Truthfully, I feel like it was a blessing (although not ideal).  I am the nurse I am because of this disease.  I simply know this because of Crohn's disease....

I KNOW WHO I AM! 

Tiny Hearts by Kimberly Henderson 

The day after I was discharged from Jersey Shore University Medical Center I was scheduled for my 3rd Entyvio infusion treatment at Robert Wood Johnson University Hospital.  I was happy I was getting the next treatment, but at the same time it was in the back of my head that this treatment could possibly not help me.  I had two infusions already and it was extremely discouraging to have ended up in the hospital for 12 days not that long after my second infusion.  My own doctor even brought this up, and trust me, it stung a lot hearing those words out loud since prior to that I was only ever thinking it.  With me....You know things are bad when I am 1) agreeing to IV soul-medrol/steroids/oral prednisone and 2) I get quiet, very quiet.  Bottom line, that 12 day hospital stay was a kick in the stomach for me but I needed to be there.  I could openly admit that.  

I thought about all of this on my way to my appointment at Robert Wood Johnson.  I went through the outpatient admitting and walked through that huge hospital finding my way to medical day stay.  I walked in and was greeted by all the same nurses I have seen the previous times I had been there.  I let them know I had only been discharged the day before from the hospital due to Crohn's related issues.  Since I had just been discharged the day before from a different hospital they had to call my GI at Robert Wood to be sure it was okay to still receive the treatment.  His fellow called back saying they weren't ever told by my local GI that I had been in the hospital, but from the information they had, they saw no issues with me getting the treatment.  With that I felt a little bit of hope since they would not put me through these treatments had they thought this would not help me.  But I still needed to physically feel results to BELIEVE it.  My positive outlook is telling me to keep holding on, all things are possible.  My crohn's sucking energy is telling me I need to be prepared for a fight!  Either way...I was holding on and I was prepared to fight my way through this....SO TAKE THAT CROHNS.

Since I received treatment I am happy to say that I have been getting better.  I did have the typical Entyvio hangover (side effects: joint pain, headache, general aches and pains).  That only lasted about 24 hours.  By the weekend I was feeling well enough to hangout with my niece and babysit for a few hours. My niece just turned 3 (Feb. 24th).  Since this was the first time she saw me since before I ended up in the hospital she had lots of questions about her Aunt Caryn being sick and having a boo boo in her tummy.  I explained it the best I could and reassured her that I was okay.  My love for my niece is beyond anything I could ever describe, so for her to be concerned about me caused me to take a bit of a step back.  She was just starting to understand that I get sick from time to time and I could tell she was trying to process it all and put the pieces together.  I also know my niece loves me very dearly.  Anytime I see her, her beautiful eyes light up the room and without fail she always runs from where she is to give me a big kiss and a hug.  The world could be ending and this little princess wouldn't have noticed anything but me.  Not saying that just to say it, ITS TRUE.  And I love that.  It makes my whole life seem completely perfect in those moments.  My only hope is that she never sees any other way.  I may have Crohn's and be sick, but I don't want my niece associating her most loved aunt with always being sick.  

Like I said previously in my last post, I had decided I would not go back to work until March 2nd.  I needed to give my body time to heal and get better.  This decision is never easy and the decision is never made without a few tears and the occasional "why me."  My purpose in life is semi-revolved around my decision to be a nurse and how can I be a nurse if I am sick myself?  I do always eventually realize that I have to take care of myself before I can care for others.  It sounds cliche' but IT IS NOTHING BUT THE TRUTH!  

Tuesday, the 24h I saw my local GI.  She walked through the exam room door and immediately smiled saying, "You have your color back in your face!"  I smiled and said, "Yeah, I actually am feeling so much better than I was."  We discussed every aspect of my 12 day stay.  Her major concern, even at this moment, is the fact that I am on 3 different immunosuppressants.  I can't afford to catch an infection or virus.  It would set me back majorly.  So we made a plan to try and get me off prednisone sooner - but the moment I get those god awful symptoms again we need to be more cautious.  I agreed with this and thankfully so far the taper is going smoothly at 30mg.  But we won't really know how my body will react until I am under 20mg.  We discussed Entyvio.  Her hopes is that my other GI can shed some more light on whether we should be concerned that I had that major flare and if Entyvio is really the best course of action.  My gut (pun not intended) feeling says it is, but I see this doctor in March for a follow up and I will find out a lot more then in that aspect.  My doctor also talked about this disease being relentless in that one area of my intestines (reminder - I only had surgery in August 2013, the disease is in the very site the surgery was performed), but she is also concerned another "not usually" major GI issue might be causing things to be the way it is right now.  If that is the case, all we can do is treat the symptoms of that because sadly thats really all we can do.  She agrees I can't exactly live like this because its not a good quality of life.  But she also is stuck.  For now we are keeping our fingers crossed that Entyvio and a few more weeks of prednisone will continue to help me and we won't have to figure anything out for the next possible issue.  

I know some may be reading this and thinking I need to see other doctors.  The thing is I already have the 2nd opinion doctor, hence the doctor I see at RWJ that prescribes the Entyvio.  This 2nd opinion doctor is the best of the best.  No.  I MEAN THE BEST.  I am getting the best care I could possibly be getting right now.  This is my reality.  I have accepted all of this.  I accept the days I feel awful.  I accept the days I feel wonderful.  I ACCEPT THE FACT THAT THERE IS NO CURE, JUST TREATMENTS.  As long as I have a plan, my family, my friends and some sense of normalcy....I WILL KEEP HOLDING ON AND FIGHTING BACK.  

My message to those who are currently struggling with any disease (or even the normal hardships of life):

It was literally one week after my appointment with Dr. Das when I ended up in the ER again on December 17th, 2014 (I remember dates, numbers are my thing, lol).  I had an appointment the next morning with my GI but the pain was just too severe.  I had to go to the ER.  It was the typical Crohn's symptoms and issues.  

They did CT scan and blood work and saw an obvious issue, but nothing that required me to get something like surgery.  They called my GI offices on call service and the on call doctor suggested if I needed to be admitted, admit me.  My ER doctor asked me what I thought since as the doctor put it, "I knew my body and this disease better than they did."  I really did not want to be admitted and since I was getting the option I told her I wanted to be able to go home with a short term treatment plan.  The doctors and I agreed on this together since we were in the process of getting approval on long term treatment.  We just had to be patient.  They ended up prescribing an antibiotic often used for Crohn's disease and a low dose pain medication.  

I was feeling better with these medications and was able to work for the most part.  it wasn't always easy and NO, I never take certain pain medications when I work.  If I had to take pain medications, I did not go to work.  I was very honest with my employer on this topic.  Communication is key.  I know this topic is a rare one with an employer, but I have to do everything right to prevent this disease from ever taking my career from me.  In fact, my employer has been very supportive.  I know this is rare situation, but I could not be more grateful.  

On New Years Eve my mom got the mail and as usual I had bills and of course the typical insurance company envelope waiting for me.  I put it to the side thinking it was likely a EOB/claim.  I hate opening that stuff because it stresses me out, so I was not in any hurry.  But 20 minutes later I opened it.  MY HEART STOPPED as I read:

"We have completed our review for the patient noted above.  Based on the information submitted, the request coverage for: 

- Infusion therapy (ENTYVIO) is APPROVED on the following schedule: 11 visits approved beginning on 12/24/2014 and through 12/24/2015." 

I immediately jumped out of my recliner screaming to my mother that I have been approved for this treatment.  I had it set in my mind that it was going to take at least one denial and several more weeks to get this approved.  Nothing I say can express how happy this moment was for me.  FINALLY I was going to be moving on to a treatment with so much potential to help me.  That HEAVY weight and anxiety was lifted off my shoulders.  Only thing that bummed me was that I was going to have to call the next day to set my appointment up, but that is a small price to pay for the gift (getting approval) I received.  

On New Years Day I headed to Leesburg, VA to spend the weekend with my Camp Oasis friends.  At this time I was feeling decent.  NOT great, but well enough to travel. Not much will ever keep me from seeing my Camp Oasis Crohn's and UC friends.  They are my best friends.  I had a lot of fun hanging out and just talking over meals with a few of the girls.  Then spent some time even drinking a bit (okay, maybe more than a bit) of wine and laughing nonstop.  This was so therapeutic to be around these friends because they understood everything I was dealing with.  I really do not know what I would do without these girls.  

January 2nd I called the doctors office and spoke to the nurses to get the treatment days set up.  it took a bit to get a hold of someone that day, but when I finally did speak to the right person they asked me when I wanted to start.  I was thinking, what a silly question.  OF COURSE I want to start ASAP.  

January 8th I headed to Robert Wood Johnson (RWJ) for my very first treatment.  I was nervous because you never know how you may react to these very serious medications.  This IS NOT tylenol or Advil.  This is a drug with many very serious side effects.  But the pros of being on it outweighed the cons for me any day of the week.  Since I had a reaction to an infusion therapy in the past it was recommended I get the pre-medications like tylenol and IV Benadryl to prevent any reaction.  They usually will also give you IV solu-medrol, but I felt it was not needed and they were okay with my decision. 

I was there a total of 3 hours, only because they slow down the infusing rate for the first few infusions to be cautious.  It was a piece of cake.  Although driving home was a bit scary as the IV benadryl made me very tired, but no worries, I was still alert enough to drive.  That night I started noticing a slight headache with body aches, but nothing too severe.  I looked up side effects and those were listed.  I went to bed that night fairly fast but woke up several times during the night feeling even worse and worse.  It hurt to walk up my stairs to get to the bathroom.  Every step was completely painful.  I had to take pain meds this day for those issues and I was out of it the rest of the day.  

Now, most people would freak out about this, but this medication is serious so their will be some initial side effects.  I asked others who were taking it and they confirmed they had the same issue but it always went away the next day or two.  I figured that was a small price to pay when usually with Crohn's I wasn't feeling well every other day.  I also wasn't scared to continue on with the next treatment because these treatments do not work overnight, it takes months for a patient to truly see the results.  

After getting over the Enyvio "hangover" I did still have my Crohn's issues, but it was to be expected since I only received one treatment.  My next treatment was January 21st.  This time the process of getting my pre-meds and the Entyvio was a lot faster and I was only there for about an hour and 45 minutes.   That night I felt the same side effects that only got worse when I woke up the next morning on the 22nd.  Severe aches and pains every where.  I did not get up unless I needed to get something to drink or use the bathroom.  That goes to show you how strong these medications are for some people.  Some people don't get these side effects, but I certainly was.  But I needed to remain POSITIVE and remind myself that the side effects will eventually be less severe and the medication was going to need more time to help fully.  

After my second infusion things seem to stabilize into "my normal."  The issues I was having was certainly NOT normal, but it was better than I was prior to Entyvio.  I started to get excited.  Like REALLY excited!  I was working and not needing the pain meds AS MUCH for the pain I would get in the area where the disease was located.  

This was short lived and I really don't even know how to write this part.  How could I go from getting better, to suddenly my body having major Crohn's issues.  On February 6th I woke up at 7:32am.  I slept right through my alarm after a night of restless sleep and the constant need to get up to use the bathroom.  I was suppose to be at work at 8am, but the only reason I even woke up at 732am was because I was in severe pain and I was stuck in my bathroom.  I couldn't believe I had to call out of work in less than 30 minutes before I was suppose to be there.  HOW IRRESPONSIBLE!  That was not excusable and I am so upset that happened.  But like always my employer, co-workers and patients families were very understanding.  I just hate when this disease effects other people.  it is not fair to them.  

I tried my best to treat the symptoms at home and I seemed to be semi okay with doing that.  As the night went on things got even worse.  The pain in my stomach was awful.  I sat in my living room completely quiet and at loss of what to do.  I eventually looked up at my mom and said, "I need to go to the hospital, but I can take myself."  So I went to the ER.  When my pain meds I take at home are not helping, I have to seek medical attention - pain is not a symptom you want to ignore.  You never know what is happening until doctors do the testing and masking symptoms with pain medications can be very dangerous, especially with Crohn's disease.  

I got to the ER at 11pm that night.  However it was a friday night so they were BUSY!  My pain was getting worse, the nausea was awful, my head was spinning, I was shaking, my whole body hurt and I couldn't stop getting up to use the bathroom.  I asked the nurse several times about when I would see the doctor, but it was always the same answer. SOON.  Around 1am I started projectile vomiting and was so sick that I couldn't even move and I just sobbed.  After the nurse saw the vomit all over the floor (they never gave me a basin even after I asked for one several times) she talk to the doctor and 5 minutes later they gave me IV zofran (nausea medication) and IV Dilaudid (pain med).  20 minutes after that the doctor did an assessment and told me he would schedule a CT scan with oral and IV contrast as well as ordering the typical blood work.  

Now, when you go to the ER in abdominal pain, especially for Crohn's disease you get a CT scan.  This requires you to drink 2 LARGE bottles of Barium (or as they call it, "Berry Smoothie," BTW ITS NO SMOOTHIE).  This tends to cause me a bit of anxiety because it is important to drink ALL of the contrast and ACTUALLY keep it down for two hours.  You can only get the CT scan two hours after you drank the last drop.  When you are in pain in the abdominal area and having nausea/vomiting, this is sheer torture.  I do have a history of drinking ALL the contrast like a good patient ONLY to vomit it up 30 minutes later.  So it can be a bit stressful.  

Thankfully I KEPT IT DOWN!  2 hours later transport comes in takes me to CT Scan and as I get in the room the radiologist starts to explain IV contrast and I stopped him.  I let him know this was at least my 20th or so CT scan, so I already knew all about this stuff.  Which he understood after I told him I had Crohn's - he said most of the Crohn's patients tend to not need the full text book version of what they were doing next.  Another symptoms of Crohn's doctors never tell you:  You will learn a lot about things in the medical world you never thought you would have to know about (however, as a nurse I do know even more because I am a nurse - I learned these things first as a patient though).  

Around 6am my ER doctor came in and told me the on call GI at my office wanted me to be admitted due to inflammation at the resection site that showed up minimally on the CT scan and so I could receive IV flagyl, IV solu-medrol (prednisone - high dose), IV pain meds since I really needed it and of course fluids and observation.  

Now, if you have been following all my post you know how I feel about being admitted and also how much I hate prednisone/steroids.  But this time was very different.  I was so sick that I was willing to do anything to get better.  If that meant admitting me and giving me a medication that has terrible side effects, then so be it.  I was too tired to care that I wasn't going home that morning.  I texted/called my family.  I called my work.  Then I let my friends know.  I hated that part.  Everyone was very supportive and caring though.  It is just not easy to constantly have to tell family/friends bad news when it comes to this disease.  I keep waiting for the day they might say, "this is too much for me to handle as your family/friend."  Truthfully I doubt that will ever happen, but it is always in the back of my mind.  I rely on these people a lot and I couldn't get through any of it without them.  I just rather to be able to give them all a call one day and say, "Guys, I am in real CLINICAL REMISSION!!!!"  I pray for that day every day.  I am sure my loved ones are sick of me being sick and get frustrated too when our plans need to be changed or having to listen to me complain on the days I fall apart.  

***Warning, I am now going to share some hospital nightmare roommate stories***

It took 5 hours after the decision to admit me to even get me into a regular room on a regular floor - they were that busy.  It was 1130am when I got into my room and the first thing I see is a roommate.  I don't mind roommates, but I always worry about getting the looney roommates.  This was no exception.  The first thing I heard her say was a bunch of curse words as she was on the phone with a person who sounded like her daughter.  I legit face palmed. You would think she would have started talking lower or called back another time, but nope.  She kept going on and on and on.  I'm not sure why she was in the hospital, but she was there.  This went on for hours and it got to the point where I asked for the charge nurse.  I wasn't feeling well and her presence and behaviors were seriously making me very uncomfortable.  By the time a charge nurse was going to come by (never did see her), the patient had been discharged. THANK GOD!

Around 830pm that night another roommate came rolling in.  She waved at me and smiled and I thought, "AWESOME, someone sweet."  BOY WAS I WRONG.  Since you have a roommate their is NO such thing as HIPAA.  I got to hear every gory detail of why she was there.  She was section 8, living in a motel, requested pain meds nonstop even though she was told countless times the doctors were not going to prescribe any and apparently she had some type of intestinal infection that was going left untreated for some time.  Pain meds were not going to help her, but that didn't stop her from asking every time she saw the doctor.  

She was always fine when no one besides me was in the room, but as soon as a nurse, a doctor, social worker or anyone willing to listen she was in the worse pain she's ever had.  When none of them would budge on the pain medication issue she got meaner and meaner and meaner.  She also never once turned off her light on her side of the room or her TV that had the volume up really high.  They then informed her she had E Coli and started her treatment on that.  Mean while she was losing control of her bowels every where and I mean every where.  She walked to the bathroom as she went to the bathroom.  She touched everything with her hands causing feces to get EVERY where in the bathroom.  When she finally came out of the bathroom "semi" clean she was not wearing her hospital gown or any underwear.  She walked right past me completely naked and looked at me and waved to me with her dirty hands.  CAN YOU SAY GROSS!  I mentioned to the staff that I have a compromised immune systems and putting me in the same room as her was not in my best interest - I couldn't understand why they didn't think of that in the first place.  They said she was being discharged the next day so they felt one more night with her shouldn't be too awful and that they would have housecleaning up in 5 minutes to clean everything so I wouldn't get her germs.  THIS did not make me happy.  I requested to see charge nurse, but as you can guess....by the time I was "suppose" to see the charge nurse the patient was discharged.  But don't worry, she made a very big last attempt to get ANY doctor that came in right before to send her home with narcotic pain killers.  What did she get? NOTHING, just her antibiotic for the E Coli.  I was so happy she was gone as was the nurse who was also caring for me.  She gave me that look as she walked out the door and I knew without her saying anything how she felt.    

I actually got some sleep that night since I didn't have a TV on nonstop because of my roommate.  But 8am I woke up and they rolled in another patient.  She was middle aged, just had minor surgery but needed to be observed for a few days.  I thought, okay, this shouldn't be an annoying roommate.  If you are laughing, it is probably because you realize you know what I will say next....

This roommate was just as bad, but even worse HER FAMILY was very hyper about every little detail.  They must have thought the "H" stood for Hilton, not hospital.  They complained about everything and loudly.  They also visited from the time visiting hours started to the time they ended and never once stopped talking in their loud voice as if I cared about their drama from their extended family.  She was also another roommate who never turned her TV off.  Even worse, the "hat" they give you to measure your urine was constantly left in the toilet and she never called the nurses to let them know she went.  So every time I had to use the bathroom I needed to put on gloves and put the hat to the side then once I was done I called the nurse myself to let them know the other patient had urine output they were going to want to document.  I can understand her not wanting to move it herself, but I could not understand why she could AT LEAST attempt to let the staff know so they could do what they had to do and so I didn't have to touch her urine hat.  She went home the 10th.

February 11th my ACTUAL treating GI came in and told me that none of the other doctors told her that, I, HER patient was in the hospital.  She felt I should be transferred since I was not getting better and it was probably best for me to be transferred to RWJ under the care of the GI who was prescribing the Entyvio (the new treatment).  This upset me a lot.  But initially I figured it was for the best.  But later on in the afternoon I realized I haven't heard the status yet of when or if I was being transferred so I called for my nurse.  After she heard my question she looked at me very confused.  No one informed her of this and she didn't have any answers for me.  So I suggested she call on call so that we could clarify the plan of action.  Again, she looked at me like I was nuts.  She said, "if I get time, I will call."  HMMMM.  I am sick, in the hospital on IV SOLU-MEDROL.  I am not in the mood for games, so I told her not to worry about it and I could just do her job for her.  So I picked up my own phone, called the on call service letting them know why I was calling and that I needed to speak to the doctor.  Well, apparently as I was doing this, my nurse finally decided (most likely because she was wrong for say that to me - because her intentions of calling were slim to none) make that phone call.  The doctor called me back first after speaking to my GI who recommended the transfer he said, "Yes you may be getting transferred, but we will discuss that tomorrow. We apologize we did not communicate this to you or the nurses." I gave the phone to the nurse and he let her know as well.  Also while I was on the phone WITH a doctor I managed to finally let the doctor know I was in need of a sleeping agent to help me sleep due to the prednisone induced insomnia.  I had asked the nurses several times to advocate for me and make these phone calls, SAME NURSE.  But they never made the phone call. I couldn't believe I was the one who had to make these phone calls.  I know with my job it is important to make these phone calls, so it seems very unacceptable for them to dismiss me for days on something that was a very real issue for me.  

Also during this whole drama, I had another NEW roommate come rolling in

By February 12th I was still not feeling any better.  The doctors had given my body a week to get better with the soul-medrol (steroid) and since it was not working they decided to set me up for a colonoscopy the next day.  FUN!  That night at 10pm I started my prep that included 4 liters of the grossest thing you will ever drink.  Of course I did not get any sleep due to this.  Then at 5am I was woken up to drink another 4 liters, but since I knew I was pretty much cleaned out I told them I really should be okay with half of the second part of the prep.  They agreed with me and so I finished half of it no issues. 

The colonoscopy was originally scheduled for 230pm, but it got moved up to 1130am.  They gave me the good meds to put me to sleep.  I remember saying, ouch that really burns and at first I was saying I didn't think it was working because I didn't feel tired.  Not even a second later I said, "Oh, Yep, I FEEL IT NOW."  I literally don't even remember closing my eyes after that.  LMAO.  Then what felt like seconds later, I woke up.  

I just did not wake up, I was screaming in pain.  Apparently they filled me w a bit more air than the usual and also dilated the narrowing I had at my resection site.  Of course the colonoscopy part of the hospital doesn't have pain meds so I had to beg them to take me back to my room so I could get the pain meds there.  The doctor told me he would order an additional dose as it was technically too soon for me to get my next pain meds.  But when I got to the room and asked for the nurse, the nurse was not informed about the additional pain med order and had to call the doctor.  15 minutes later the doctor was at my bedside and could see how awful I was.  

He ordered the pain meds and a x-ray to be sure that they didn't perforate my bowel during the colonoscopy.  I got the pain meds an hour and 15 minutes after waking up in that horrible pain.  The x-ray didn't show a perforation, thank God!  The next morning the doctor came in and decided since I was not getting any better we would schedule a MRE.  They do not do this procedure over the weekend so I had to wait all weekend to get this done and that meant staying in the hospital longer, but at this point what was a few more days?

Monday morning the nurse walked in with not just 2 bottles of barium, but 3.  I was immediately stressed.  I had to drink these in 30 minutes.  Oddly though, the barium flavor was not one I had ever heard of or tried and was expecting it to taste absolutely terrible.  I took my first sip and though, THIS IS SO GOOD!  No, I am not kidding.  Maybe it was the prednisone or maybe I am just crazy, but it really did taste good.  I had no issues drinking it all.  It is the small things in life that make me happy.  So, yes, drinking this barium with ease was one of those small things for me.  

At 9am they came to get me for the MRE.  When I got there it was freezing so they covered me in LOTS of really warm blankets.  I was still shivering though. Then they got me set up in the MRI machine and  I sat in that awful machine for close to 40 minutes.  

I got the results later that afternoon.  It basically showed the same thing, nothing more.  Which was good news, but  we still needed to hope that my current treatment would start helping a bit more.  Since their was nothing more they could do after this test other than give me prednisone and other oral medications they told me I would be discharged the next day.  They especially wanted to discharge me on tuesday since wednesday I was scheduled to have the Entyvio infusion at RWJ.  I could not afford physically to miss that appointment.  

February 17th, 2014 I was discharged after a little less than 12 days.  I was so happy to be going home.  I missed my cat so much.  I missed every thing about home.  

This 12 day stay was hard, but I am actually pretty proud of myself.  I did not have a meltdown every day.  I kept it together 90% of the time.  I didn't fight the medical advice of being put on steroids.  I was doing everything I had to do.  Since I knew I was going to need more time off from work I decided to take a very short, short term disability.  I decided with the doctors approval of going back to work on March 2nd.  I really hate having to take disability, but this is just another part of what this disease sometimes causes.  Again, my work was supportive as well and they gave me no problems and verified I would get all my hours and same schedule back the moment I was ready.  They were amazing to me through the whole experience.  

The past 12 months have been really very difficult for me in terms of my health and trying to be a productive adult.  Being sick in your mid/late 20's versus being a sick "child" is incredibly different (never to say however that anyone has it "easier").  When you are a kid you are able to cut corners and life is just generally "easier" when it comes to responsibilities.  If I was too sick, I was home schooled.  As an adult with a career things just get so much more difficult when you are sick.  The reality of having this disease for me has meant not being able to work from time to time because of a surgery or hospitalization. The reality is hard to accept.  Thinking about putting your job on hold, your whole LIFE on hold is stressful.  The best way I can describe what this does is what I call paralyzing anxiety.  I will discuss later why what I go through can cause this type of anxiety, but my point right now is that this disease (any chronic health condition) can really affect your life dramatically.  Sometimes you just pray you get through a day without a meltdown. I do stay as positive as I can, but I am human.   

After finding out last february that I was most definitely NOT in remission I became a bit discouraged.  I knew it meant I needed to eventually, as in soon, be on a different treatment.  But at the time their was not ANYTHING and I mean ANYTHING out there for me.  I was on what was the best medications at the time. The plan was to increase a dosage of certain medications and that was it.  It was terrifying knowing my body was just ticking bomb and I was at the mercy of hoping something new will come along to treat this disease.  During all of this I was just trying my hardest to work hard and live my life as normally as I possibly could.  

I say this a lot, but it is because it really hurts me to the core of my being.  THIS DISEASE WILL NEVER JUST AFFECT ME.  NOPE.  It affects everyone else around me.  My parents, my employers, my co-workers and the hardest of all...my patients and their amazing families.  I call out when I am sick because I have to and their is always a chance my job may not find coverage. So even though I am the one sick, I am never the only one who suffers the consequences.  

In the spring of 2014 things were up and down but I kept out of the hospital.  I made appointments with my doctors when need me.   Symptoms were being treated.  I worked as much as I could and called out when it was necessary.  I did what I had to do.  I saw no other choice.  It is completely exhausting balancing this sort of "life style."  

By the summer, after I attended Camp Oasis I started feeling extreme fatigue along with the many other Crohn's related symptoms.  In the middle of July of 2014 I called out of work and headed to the ER.  I was in pain, dehydrated, having major GI related issues and  things were only getting worse.  I was admitted for the third time in 12 months at that point and that was three times too many.  It never gets easier when I hear a doctor tell me they will be admitting me. Of course I can refuse, but when a doctor admits you its because you really need to be there.  I would be dumb to ever go against medical advice.  I always can tell when this situation is coming, but I am never mentally or emotionally prepared to actually be admitted.  I would be lying if I said I was so strong and took the news well.  I cried.  I had that, "why me" moment.  I hate admitting to that.  But another symptom of this disease the doctors never tells you is falling completely apart from time to time due to the extremely stressful nature of this disease.  This is the reality of it.  Chronic diseases don't go away overnight nor do they go away forever.  

This hospitalization was frustrating.  I was sick, but I also just wanted a quick fix ("fix" meaning something close to a cure for short term) to get better and return home.  I was in the hospital only 4 days but it felt like forever.  Every day my doctor walked in the door I asked if it was possible to be discharged.  Every time they said, "not today," I kept it together long enough for them to walk out the door.  Hospital depression is what I call it.  This isn't anything like a normal depression and during this stay I definitely had severe hospital depression (thankfully I have been getting better with this).  The night before I was eventually discharged I called a friend who really helped me get through that night.  We even discussed how I was going to get the doctor to allow me to go home.  

DISCLAIMER: I DON'T SUGGEST EVER LEAVING THE HOSPITAL UNLESS YOU ARE HONESTLY READY!  

The next morning the doctor walked in and I sat up ready for disappointment.   I asked him again, "can I got home?"  Again he told me it wasn't a good idea.  I then went into my script of what I discussed with my friend the night before.  I slightly lied, a white lie.  I said I was at my baseline and that I would not get any better than I currently was and that they could not do anything more for me at the hospital then I could for myself at home.  I DON'T recommend using this unless its true, but I really just wanted to go home.  The doctor looked at me with a loss at words, then he said, "Okay, but if I see you back in here in a few days with a CCFA Camp Oasis shirt I will kick myself for allowing you to go home today."  I smiled and said, "That's okay with me doctor, I have CCFA Take Steps shirts too!"  Clearly I still have a sense of humor even at my worst.  

A few days later I went back to work.  It was nice to get back to a normal routine.  I was also picking up a lot of shifts at the time because I felt like I had to make up for the times I had called out. I wanted to prove myself, which I know is silly since I work for an extremely understanding company. 

After I was back home I started doing research about a medication that had been FDA approved for Crohn's and UC in May of 2014.  That hospital visit was the first time I heard of this medication and I learned it was not like anything they currently had for this disease, which sparked my interest. A GI at my doctors office mentioned it as a possible treatment. My current treatment was not helping, so I was looking for something that was completely different to treat this disease.  At my next appointment I brought it up to my doctor and mentioned that one of the other doctors told me about it.  Even though it was FDA approved for a few weeks my doctor had very limited knowledge of this medication.  She suggested I head to Mount Sinai for a consult and go from there as she agreed a new treatment was definitely needed.  

Sadly I got new insurance that past May and this new health insurance DID NOT allow me to see doctors out of the state of NJ.  I felt like I hit a giant brick wall.  I immediately started thinking of plan b and decided to email the Camp Oasis WV doctor to ask for his advice.  He made a very, very good suggestion at seeing a doctor at a university hospital.  I don't know why, but as soon as he suggested that it was like a light bulb went off.  When I was 16 I saw a doctor at Robert Wood Johnson who was HIGHLY recommended by many doctors for this disease.  I decided he was the next best thing to Mount Sinai.  I would not have thought of this doctor if he did not make that suggestion, so I am truly so grateful for him. 

Unfortunately a lot of things were happening around this time in my life not related to Crohn's so my health did get put on the back burner for a bit.  I had all my records to go see this doctor, but I kept putting off my appointment.  The reason why does not matter, but just know it was a damn good (but awful) reason.  Not trying to be vague, but this isn't mine to share with the world.  It did however affect me greatly causing me to not focus on my health at the time.  

Putting things off caught up to me in the late fall of 2014.  I finally decided I had to make an appointment to see this doctor and I did.  Only I was going to have o wait a few weeks because this doctor only had appointments ONE day a week.  On December 10th, 2014 I went to see this doctor with all my records I had for the past 16 months.  The purpose of this appointment was to discuss Entyvio.  Which was the newest FDA approved drug for this disease that was showing promising results for many people with this disease.  

After seeing his fellow and going through 11 years of my medical Crohn's history I saw THE doctor, Dr. Das.  By the way, summarizing 11 years of a medical history is not easy. He also agreed I needed a new treatment.  He gave me two options.  Entyvio, which is why I was there or Cimizia.  Cimizia was not ideal for me as it was very similar to the other treatments I have been on.  I didn't want to try something similar, my decision was made long before that appointment.  Thankfully he completely understood and said they would get started on the approval from the insurance company.  

And so the anxiety of waiting on a letter for denial or approval of treatment began.....

Awareness for this disease is so important to me because this disease may be "something" that people heard of but they don't usually know anything more than it being a "tummy issue."  When I was diagnosed I really had no idea how much this disease would affect me.  When you are diagnosed with a chronic disease doctors do their best to prepare you for certain aspects, but I never once had a doctor discuss or bring up things like body image. If your doctor happens to bring this topic up, it usually is because you mentioned it first.  Doctors forget to ask certain questions at times.  On the flip side patients might think the doctor isn't bringing it up because you may feel its not apart of their job. A change in body image is just ONE of the many different reasons IBD is more than a "tummy issue," however here I will solely only be discussing body image. I will talk in later post about the others.  

I think it is important to not just share my personal experience with this struggle and you will read both my experience and others experience with this.  

Before I was diagnosed I was very thin and usually the tiny one out of my peers growing up.  The reason I was like that however was because I was undiagnosed for those years.   When I was officially diagnosed I didn't even think about how this disease might make me feel awful about how I look, all I cared about was getting better physically.  So I did what the doctors told me because it was going to make me feel better....at least physically.  I was treated right off the bat with prednisone.  I didn't know what this medication was but I knew it was used to treat this disease.  That is all that mattered, right?  

NOT REALLY!  Sadly that treatment was working although I was experiencing the side effects.  The weight gain was the major side effect I hated.  Did I need to gain weight, YES...But not in that way that prednisone causes you to gain it.  It is mostly water weight.  However, even when you come off of prednisone its usually because the disease is getting better and you will be at a healthy weight.  That healthy weight is shocking for some people because to them, their pre-diagnosis weight was normal. At least for me that is how it was.  

Since oral prednisone wasn't working I ended up in the hospital fairly quickly after being diagnosed.  Treatment number two required surgery.  Surgery means scars and many other things with IBD.  Those with this disease having surgery often face the very real possibility of needing an ostomy.  Ostomies are not something people talk about, I mean who wants to talk about poop in bag that is attached to you.  I get that this is medically needed at times, but that doesn't change the fact that you may wake up from a surgery with something most people have no understanding of.  I woke up from the surgery in severe pain but after I was drugged enough to not care about the pain I was able to attempt to feel around to be sure there wasn't anything there that wasn't suppose to be.  I sighed in relief after not feeling anything abnormal.  If youre reading this and thinking, "how superficial," please be reminded that living with an ostomy is not something that is easy.  

I was in high school.  My body was already changing so much due to this disease.  I wasn't sure I could handle that and thankfully so far I haven't.  I wondered how I would change in the locker room at school for Gym class as well as after school sport activities.  Also, lets face it...high school aged peers are not exactly those who don't find reasons to bully you.  

I would love to say these body images issues related to this diseased only occurred during my high school years, but the truth is it has not ever went away.  My weight....I hate scales, I really do.  I hate it when I am losing weight and I hate it when I am gaining.  The times I am losing is because the disease is active.  The times I am gaining I am not exactly thrilled because I am constantly seeing a different person in the mirror.  I am going to be completely honest here.  Before I was diagnosed I had "friends" in my circle of friends who often talked about how much they hated their body and the things they would do to lose weight.  I remember thinking, "How can someone possibly go to extremes when they are unhappy with their appearance."  I didn't get it or understand it, but it was because I was not in their shoes.  I now do in fact get it.  I certainly don't have an eating disorder, but this disease has given me a struggle when it comes to my "relationship" with food.  

In 2013 I was at my lowest weight since being diagnosed.  I was very ill.  I ended up having surgery for the second time.  Since I was initially feeling better I was eating a bit more.  When you basically starve yourself because you are scared of the consequences of eating you don't realize how much harm that will have in the future.  After surgery I gained weight and once again I was struggling with even looking in the mirror.  This is why I never let go of my clothes so easily when I need space for new clothes.  I just never know what size I might be wearing that week/month/year.  

Body image issues wasn't something I expected would be an issue for me, but it truly is a struggle and so much a part of this disease.  It may sound silly, but it is the truth.  

I am lucky to have many friends with this disease who I have brought this topic up to.  So I will share a few things about their struggles with body image.

One of my campers from CCFA Camp Oasis spoke to me recently about this.  She is currently on a very high dose of prednisone and dealing with the things that come with that.  Moon face is real and after you seen it once you can recognize others who are on it without them even telling you.  She also currently has a Nasogastric (NG) tube to get her nutrients.  This requires a tube going into her nose and taped across her face.  It is obvious, but because most people her age never probably seen once I am sure it's not easy being the person with the NG tube. Since she is in high school this disease is not something she would want to bring up to peers because it might start the conversation of, "oh, what is Crohn's disease?"  Although its great to spread awareness, its not exactly a very pretty disease to talk about.  The symptoms related to this disease can be extremely embarrassing.  This has certainly taken a toll on her body image. 

 Another person I know is in her mid 20's. In mid 20's its not easy trying to live a normal life to only end up having an "accident" that 2-4 year olds can typically only get away with.  

A lovely person I know struggles with things like her hair falling out, to how much her joint related pain causing her to not walk in the way she once walked before.  She could once wear clothes and shoes that were something most women can go about wearing, but due to this disease she can't do that anymore.  This had in fact caused her to not feel as pretty anymore.  It all boils down to this disease causing major changes in your body in which you have little control over.  She has had this disease for many years now, this is not something ONLY young patients with this disease go through.  

My close friends from camp have all the same feelings I do about this topic.  Our struggle might slightly be different, but it has been the challenges of this disease that caused how we view ourselves.  One of my friends was diagnosed with UC less than a year ago.  A few months before she was eventually going to have surgery to remove her colon and have an ostomy she had said that she would rather die than have an ostomy.  She may have been new to the disease, but she was well aware of these potential treatments and how hard it was for others to go through.  

Another one of my Camp Oasis campers shared this:

"For an "invisible illness" IBD sure messes up appearances. I remember when I was in gymnastics around 8 years old, I was the only kid in the class without freaky big muscles for a little girl. The others all had abs and used to make fun of me. I thought I was just not trying hard enough. It took me a long time to figure out I was actually just sick and malnourished."

I am going to keep this one anonymous (unless she reads it and decides I can use her name).  She wrote:

"I can tell you privately that I have terrible body image issues since the Crohn's. I have gained so much weight because of the medications that I feel ugly. I cannot believe the person I have become and it makes me sad. I am not coping well and I have had issues with being close to my husband. The crohn's arthritis has made me use a cane/walker/wheelchair depending on the day and I feel old and sometimes humiliated...This was hard for me to share because I don't like sharing this part of me."

THIS IS WHY I SHARE THIS.  This last person doesn't feel comfortable sharing her story but it affects so much of her life. Crohn's and UC plays a MAJOR role in body image and to those who have limited knowledge of this disease I bet you never thought of that.