Wednesday, September 30, 2015

The Game of Perfection

My life is like a delicate game of Perfection. It takes me forever to get all the little pieces of my life in order and put in the right place, but once the pieces are all where they belong, life is worth living.  I want to be alive.  I want to see what each day brings and I'm basically happy.  All is right with my world.  Depression isn't as big of a deal.  I can handle pain and sickness better.  I don't worry so much and I'm less anxious about everything. But inevitably, in as quick as 30 seconds everything in my life explodes. All the pieces go flying and I have to scramble to get them back where they belong.  The more often my Perfection game explodes, the longer it takes me to find the pieces and put everything back together.  And the more I have to continually play this horrific game of Perfection the less I want to. It's not fun.  I'm forgetting where everything goes and why it matters so much because it's all just going to blow up again anyway. 

Sunday night my stomach started hurting in a gnawing, burning annoying kind of way.  It had been feeling that way for the previous few days off and on but Sunday night it just wouldn't stop.  Through the night it continued to wake me up and I had a few bouts of diarrhea which didn't necessarily hurt anything - but it definitely didn't help anything. Early Monday morning I placed a call to Dr GI and left a message for further instruction and I took a pain pill that, as you'll remember, Dr GI had just prescribed me for my most recent flare going on in my colon.  I was also taking the Entocort and Pentasa again.  Remember, the CT scan from July that showed the inflammation in the colon and with my current symptoms and all Dr GI decided it was a 'member.

About an hour and a half after took the pain pill the pain had not stopped or even eased up at all.  In fact, it was a little worse.  I felt horrible.  I still hadn't heard anything from the doctor so I knew it was time to call my husband.  I had to go to the ER.

Well in true ER visit form, it sucked.  I was at the ER, I was in pain, every single person that came in had to ask me a million and one questions fourteen times because no one ever reads the damn chart or talks to each other.  Then they did another CT scan test like I had just had done at the end of July when I was there.  They gave me some pain meds - nothing.  Still in pain.  They gave me a different pain med - it helped.  Not a lot, but it was something.  During all of this I spent at least four hours explaining to the various MDs, DOs, Hospitalists, Interns, Attendings, Nurses, Janitors, and general administration the essence of Crohn's disease, how it has affected me, my personal history with it, the various medications I have been on and what my GI was currently doing to treat the flare up in my colon that he said I was having based on the CT he looked at from July taken at the same ER that I was at currently. Frustration doesn't begin to cover the range of emotions I was feeling.

All my lab work came back fine.  My CT scan showed some inflammation in my colon. They didn't use contrast on this one like they one they did in July but whatever they saw they wanted to put me on IV steroids.  It took forever for me to convince them that they needed to contact my regular GI because I cannot take Prednisone anymore due to what happened when I was on it in 2009.  See THIS BLOG POST as I describe some of the side effects I was having from the Prednisone and after much discussion with Dr GI at that time, it was determined I shall never again have to be on Prednisone.  However, the current doctors at the ER didn't read the script.  No one was listening to me. 

After several hours of waiting, it was determined that I had to be transferred to a different hospital because my GI didn't have privileges at the hospital I was at. (even though they are all owned by the same Super Corporate America Company that thinks they know about how to run healthcare better) So I got to ride in an ambulance to the next hospital so I could be admitted for pain management and observation and more testing and torture.

Once I got to the second hospital, a slew of doctors and medical people came in.  One right after the other.  They were all literally hanging outside my door waiting for the next person to be done.  Every doctor had to come in and mash on my stomach and listen to my heart and lungs.  Breathe deep.  In and out.  Where does it hurt?  When did it start?  What does it feel like? Blah, blah blah.....   Eventually they decided to give me some pain and nausea meds and they put me on IV Prednisone. They slipped that in there before I knew what was happening.  The GI who was covering for my actual GI wouldn't come see me until the next day and then he would decide what to do.  I was assured this "one small dose" of steroids wouldn't hurt anything despite my not wanting steroids.

SIDEBAR:  I take a lot of medications.  I am strict about how I take those medications.  I don't like it when people fuck with my meds.  Every time I go to the hospital they fuck with my medication.  They give me my day meds at night and my night meds during the day.  They never give me enough of my medication for the acid reflux issue I have that feels like acid is burning a hole in my throat because the recommended dosage isn't what I take - I need more.  Even if I tell them they have everything mixed up and I take certain things at certain times and take more of certain meds than recommended because that is what works for me and my doctors all know this - NO ONE EVER LISTENS and they just do their own thing.  I was already irritable.  Now they are fucking with my meds and they had me on steroids.  Can you hear the Perfection pieces starting to pop?

The next day after even more doctors came in and asked all the same questions again and again and mashed on my stomach again and again no one really said anything to me.  I mean, I literally had one head doctor lady who didn't seem to know anything, two other doctor people telling the head doctor lady about me and two med students standing there doing nothing.  They were all talking about me but no one was talking to me. I asked questions and the only thing anyone ever said was they wanted to wait and talk to my GI doctor - who wasn't even my GI - it was the stand in doctor and he still hadn't come to see me yet.   The general consensus though was that my Crohn's was flaring and needed treatment.  OK.  I knew that.  I was in a bad flare.  I got it.  I've done that before - I can handle it.  All this made sense. Until the nurse happened to offhandedly mention a few hours later that I needed to start my colonoscopy prep at 5pm that night because I was scheduled for a colonoscopy at some unknown time the next day.

I hadn't eaten for two days and counting.  I was in pain.  I wasn't even having that much diarrhea because of the lack of anything in my system.  I did NOT want a colonoscopy. I could not endure the prep - and they were discussing enemas.  OH HELL NO!  Dr GI just did a colonoscopy in January.  The CT scans proved it was my Crohn's flaring.  I didn't need a colonoscopy.  And why the hell didn't anyone actually come and tell me that was the plan?  Anyone like one of those eight million doctors that came and mashed on my stomach and listened to me breathe?  I have to have special considerations when I have a colonoscopy.  I cannot take pain meds while I'm prepping because I will most definitely shit all over myself.  I was in the hospital to get said pain meds because my pain was that bad but now I couldn't take them?  Why were they doing this?   Why wouldn't anyone talk to ME?  I wasn't consulted through any of these decisions.  I demanded to see the GI and I wasn't nice about it.  I was already not getting my meds normally so my anxiety was reaching a level that was dangerous.  I could feel it.  I was seething. 

Stand in Dr GI finally came in and sat down and we talked.  Enemas were immediately taken off the table.  I would be given the proper sedation I needed and I could only do half the prep because I didn't need all of it.  He knew I was pissed.  It didn't matter.  I was having a colonoscopy the next day.  I was so exhausted it was hard to continue the level of upsetness that I had reached.  Anxiety took over from there and I just began to panic.  I was awake all night because I was afraid if I slept I would shit all over myself because of the prep.  I hadn't slept the night before either because of the pain and being in the hospital sucks.  And the night before that I didn't sleep much because I was at home dealing with the pain.  I was beyond exhausted and beyond anxious.

The colonoscopy was done the next morning.  It showed nothing.  No Crohn's.  What?  The doctors wanted me to have another CT scan with contrast.  The kind you drink that is like a laxative.  Like the laxatives I had just endured the night before for the colonoscopy prep.  Like I needed anything else to make me poop.  I was hurting.  I couldn't have the pain meds and more laxatives.  I reached a point where I just couldn't do anything else.  I was done.  I quit.  I mentally checked out. 

Here was my thinking:  If they did more tests they weren't going to show anything anyway.  There is no Crohn's.  No reason to be on the steroids (which I later found out was 40 mg of Prednisone they were injecting into my IV at least twice a day but I think it was really three times a day)  I was NOT going home on Prednisone.  I didn't need to be on anything for Crohn's because they couldn't find it - again.  No reason for the pain I was having.  No reason to go through more tests.  No reason to be in the hospital.  No reason to live.  No reason.  I have played this "I feel horrible and I'm having pain and diarrhea and all the other symptoms of Crohn's disease without having Crohn's disease" for years now.  Not weeks, not months but YEARS!  Years of my life wasted on being sick with no cause.  Every last piece of the Perfection game had popped.  The pieces were everywhere.  All I could do was cry.  I just cried.  Hysterically.  For hours.  The gang of doctors and students came in my room to try to talk to me finally, but it was too late.  What happened was not one of my finer moments.  This picture sums it up.  I'm pretty sure at least one of the student doctors is still rethinking their career choice.

After the nurse and several other doctors - even a resident doctor that had nothing to do with me or my case - offered me an Ativan and some time to "calm down and make a rational decision when I wasn't so upset", it was settled that I would go ahead and have the CT scan with the contrast and it would be later that day.  Except it wasn't.  After waiting and anticipating for six hours I was told that two techs in the CT department went home sick and I wouldn't be able to have the test that day after all.  I was allowed to finally go home and follow up with my own GI.  They realized the CT scan was pointless, I guess, and I was supposed to continue the Crohn's meds I was taking before I went to the hospital.  No changes. Let's pretend like nothing just happened.  I went home.  I was still in pain.  I was probably in more pain because now every piece of my Perfection game was out of it's perfect little place and some of them weren't just out they were lost.  And lying in a hospital bed for three days caused my Fibromyalgia to rear it's ugly head.

I called Dr. GI the next morning.  After review of what took place at the hospital I do not have active Crohn's.  I was supposed to continue the Pentasa but not the Entocort.  Did I mention I received at least six doses that I know of for sure of 40 mg of Prednisone via IV in the hospital that I was now stopping cold turkey?  I'll be ok - no one seems to be concerned about that.  (FYI: I'm still NOT ok)

So what now?  I honestly don't know.  I don't know what I am going to do.  See, those pieces of the Perfection game, they are all popped out.  There are some that are gone forever.  I lost them at the hospital.  I lost the ones that were hope, meaning, faith, fighting and caring.  I don't care what happens to me anymore.  I don't want to fight anymore.  I've said before that I was done and then somehow found some inner strength to get through.  But now, now is different.  I'm really done. There is no more inner strength to draw from.  I don't care anymore.  I'm done with medicine for problems I don't have.  I'm done trying to get people to listen to me.  I'm done fighting to convince people that there is something wrong when clearly, there isn't, or it would've been discovered and treated by now.   All this fighting I have done for all these years has not been worth it.  I haven't won anything.  I haven't been given a break.  My family has gone through hell.  My body has gone through hell. I am emotionally in hell.  No one would expect me to endure abuse this long.  Why do I have to continue to suffer?  With no reason, no cause, no relief, no cure?  I'm tired now and I just want to go home. 



Anonymous said...

I've been in the same situation. I too have Crohn's disease. I have been through every drug available, failed all three biologics and I am now on Entyvio a brand new immunologic. I finally had a re-sectioning in which they took out 5 feet of my terminal ileum. I've been through quite a few doctors and I've been in your spot two many times to count. A while before I was diagnosed, bu well after my symptoms had started I went to the ER, I was 19 at a college five hours away from home. I went after practice by myself only to be ignored and dismissed after several hours lying by myself in a hospital bed and told my liver was fine. I remember thinking well that's good but I wasn't worried about my liver. Another particularly delightful time the GI I was seeing attempted to medicate me in the hospital so that she didn't have to deal with me. It ended up backfiring and made her look like the cray one once her colleagues met me. However, as bad as it gets I know that I have to be my own advocate. Sometimes things in the hospital are unavoidable, hospitals are busy and a nurse dealing with her patient coding is more important than my needs. Also you may be with nurses or internists who are not super familiar with Crohn's. Unless your hospital treats a high amount of GI problems it isn't all that familiar to most. But at the same time if something is wrong with me I make it known and I keep making it known until it is changed. Ask to speak to a doctor, speak to the charge nurse etc. Sometimes you need to insist on your treatment. I spent months this year hospitalized thanks to Crohn's and honestly 75% of the things I was upset about during those stays I had the power to change if I advocated for myself. It's so easy to get lost in that downward spiral, but we need to pull ourselves out in order to take care of ourselves. No one knows your body or symptoms better than you do. Also I saw that you have had work done at Indiana and Purdue. I am not sure how far away you are from Chicago but I know from a fellow Crohn's sufferer that they have one of the top IBD programs in the country. I know her GI has sent her over there for a second opinion on her case as well as for some specific treatments. I know you are struggling waiting for your disability to be set up, but once that goes through it may be something to think about.

Karla Zamora said...

I'm reading your blog and I feel like it was written by me. Like it is being written by me right now. I'm so done. Done trying to make my family, doctors, coworkers, friends that my pain is real, that my symptoms are real. Done having to put it all together and put on the "strong" mask on just to please everyone around me. I'm in excruciating pain, pain that cannot be created. Yet just because my tests come back "normal" then it's not real. I'm so exhausted mentally, physically, emotionally..... I don't know how to continue "fighting" when I'm fighting against the unknown