Have a Personality : How to get a Rebellious Patient to Like You

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I am a huge pain in the ass when it comes to being a patient.  I am a control freak, so naturally, having a chronic illness takes away some of that control, add in the doctors who seem like they are just dictating the remaining happiness in my life… and there’s me.  I’m that patient that the nurses adore and the doctor’s loathe.

In order to get the feeling like I have some sort of control over everything, I have a habit of researching each and every drug I take or procedure I have.  I don’t take medications that I don’t deem safe, or I don’t want to (unless my life depends on it), and I most certainly don’t undergo procedures if a second (third, fourth or whatever) opinion deems it not yet needed.

I’m that patient that the nurses remember because I argue the shit out of anything I don’t agree with, or straight up refuse if I haven’t researched it.  I’m the one who you can usually find the nurses and aides stopping in to say hi, and tell stories about things I’ve done, doctor’s I’ve pissed off, or “remember that one time you went AMA and threatened to sneak down the stairs??”.

My first GI doctor was legitimately a bitch though.  She really was.  Her name started with a W, so she was immediately re-named Dr. Wench.  After having peri-anal surgery, she decided that I had Celiac Disease when I first started getting sick.  8 months, 80lbs, and almost dying- later, I had started ER-hopping because whenever I called Dr. Wench, I was told “You must have some gluten somewhere in your diet, otherwise you wouldn’t be sick”.  By chance, in the ER of my now “home-hospital” I ended up with my last GI doctor.  Boom, Crohns Disease.

That first doctor did a number on me, because of her (lack of care) lack of research and refusal to listen to my symptoms, I missed the first year of my daughter’s life.  From there on out, I treated each doctor the same.  They were the enemy, they weren’t looking out for my best interest (which admittedly, some don’t), and there you have it… I became *that* patient.

I was a horrible patient with my last GI, whom I periodically graced with my presence through out almost 7 years.  He was great, by the end of our “relationship” he would even give me drugs to research and listen to me if I refused drugs (even if he didn’t agree).  I ended up switching to Entyvio, so with his lack of knowledge of it (it’s a spanking new drug people), I switched to his counterpart.  He was free of me, and I was nervously awaiting meeting my new GI.

At this moment in time, I’m writing from my hospital bed.  I’ll put up another post about the why’s later on, but yesterday and today, with some interaction with my doctors and a surgeon who’s minions know me by face, name and cat scan, made me have that “Eureka!” moment.  I finally figured out what makes me like a doctor (and why I’ve liked 90% of my nurses), what that little bit of something I’m always looking for is.

Show Your Personality!

Once I met my GI, I instantly warmed to him.  He listened, he laughed at my half-assed “You don’t know what you signed up for Doc, I’m not a good patient” comments, and he took the time to listen.  Score one for GI.  I had only seen him once in office, but was much more content already, so when I had to come in to the ER this time around, I was VERY comfortable talking to him and telling him everything I felt, both physically as well as my fears as to what my disease was doing and to what meds I would end up on.  He listened, re-assured, and promised to come back the next day.

Well, when he came in yesterday, I was pain killer free, and he had asked me about something I said the day before when I was all full of dilaudid.  I cracked some joke about not having any clue, and painkillers being my friend through puke-fest 2015.  Without blinking he cracked a smile and made fun of me for being all doped up when he came in.  I laughed, the boyfriend laughed, and he laughed.  We finished our chat/game plan, and I settled in for the night with that feeling that I was about to realize something… but couldn’t put my finger on it.

The surgeon (who I’m just going to refer to as “my surgeon”, because he’s been bugging me for a year or so now, so we all know he’ll be the one cutting parts out of my innards) came in today, again, he’s usually in my little hospital room every day I’m here… ever… with everyone of his PAs rushing to catch up.  I think he’s caught himself a cold or something, but regardless, he came in, admitted he had a long day, and literally flopped down in the “guest chair” with one leg over the arm rest.  For the first time since I was introduced to him, I had an honest to god conversation with the man, (and his little minions) and we came to an agreement about surgery (again, another blog).

As he left, that Eureka! moment hit and I finally realized why all of a sudden I wasn’t being such a pain in the ass.  After years of fighting every step of the way, all of a sudden I was agreeable to their recommendations (I still researched them though) and I actually enjoyed my conversations with them… I felt comforted by their opinions and recommendations instead of wary.  Both of my main doctors (now), my GI and my Surgeon, managed to show some personality to me.  Granted, one was because I think he was so physically exhausted he couldn’t stand up much longer, but still.  I got to see that they were people.  They were people, just like me.  People who get tired and just want to sit, people who can’t resist a “you’re high” joke or even better “like a good little patient” joke (I’ve never seen a nurse have to gag to hold back laughter before) (also 20+ points for getting that one out, that was 7 years in the making). I finally have doctors who inform me of my options, give their recommendations but let me have a bit of control with what happens with my life.

I think with nurses, they have always been trained to play a comforting, almost maternal/paternal role – if not a friend-like role, and by stepping into those tall boots, they naturally let a little bit more of their personalities flow out.  Which would explain why I haven’t had too many issues with nurses over the years.  It just feels good to have doctors that I feel like I can email with concerns or questions and know they’ll answer.  Look at that people, all it took was a little humor and a long day to make me actually like my docs again.

I’m sure there will be road bumps, as I’m still not a like-able person on most days, but hey, I’m finally getting somewhere.

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Home sweet home. Now where is my sleep?I

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I am home.  I am glad to be home but I feel completely exhausted.  I got around 6 hours of sleep last night, almost interrupted and it feels like I haven’t slept since yesterday.  I was hoping that I had an appetite this morning, but nothing.  I thought about making some oatmeal or something easy to digest and just dealing with it… but the wave of nausea that came after that thought changed my mind.  I’ll try again later on and hopefully manage something so I can get some energy.  At lea st I know the obstruction is still clear though, I can keep down liquids and no pain directly from them.

I’m glad to be out of the hospital though, I was discharged yesterday afternoon after meeting with my surgeons and my GI.  Surgery is a no go for now, both surgeons feel like if I can continue to keep a handle on my disease barring a hospitalization here and there to help with a minor obstruction, that it’s not necessary to slice and dice now.  My GI (reluctantly) agreed and he and I discussed new medications and altering my normal ones.  The conversation wasn’t the most enjoyable, but it needed to be had, which I knew even before this last obstruction.

So since there is a new area of inflammation and the regular area doesn’t seem to be improving anymore, it looks like Remicade (my infusion I get every 8 weeks) is starting to not work.  Both of the GIs think that my body is building antibodies to the medication, just like it did for Humira.  So we added Entocort back to my med list, mostly because Prednisone had so many nasty effects for me and had started to do some damage, I didn’t seem to have such a hard time with Entocort.  In addition to that, I’ll also start taking 6mp again.  I’m not thrilled about that, mostly because again, side effects as well as the higher risk of Lymphoma (in additional to the small risk that Remicade carries).  That and the weekly blood draws to monitor me.  Ugh.  I’m not pleased but honestly Remicade had been working great (short of the fistula) and we don’t want to let that go.  The goal is to use Remicade as long as possible and to use the Entocort to bump me as close to “remission” as possible.  Then, eventually, when I absolutely need it, I’ll have a resection.

So I guess let’s hope for the best, and in the meantime, I’m going to go lay back down.  Crohns sucks.

Chronic Illness: Take a good look at your life

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A lot of things change when you’re diagnosed with a chronic disease.  The emotions alone, the emotions that you have to endure when you find out that you have a disease that you will have to live with for the rest of your life, the emotions are devastating.  My life seemed to halt when I left the hospital for the first time with a brand new, shiny diagnosis.  I had already gotten over the shock I fell into when I finally had a cause for the weight just falling off of me, for the pain for the past year.  I walked out of that hospital, and life stopped.

Since that day, 5 years ago now, life started back up again.  I purchased a house, divorced and then finally started to settle down again.  I’ve been working the same job for almost 3 years now, life is stable, calm, and most definitely moving forward.  However, it’s not the same.  Since I was diagnosed I have moved on with life, but it seems like my Crohns Disease partially dictates what decisions I make.  I plan around and for my Crohns Disease, both in what I want to do tomorrow, and what I plan to do in 10 years.  Crohns Disease is part of my life, there for it has a place in my plans.

Life is a bit different now.  I plan around infusions that I need every 8 weeks, I make sure to fit in all of my appointments for each doctor, which trust me, I have quite the handful now.  It’s not really bad though, it’s just different.  Some parts that have changed?  My outlook, how I take care of myself.  I try my best to follow a healthier diet, I get some moderate exercise, and stay away from things that I know will set off my disease.  I’m working on cutting down smoking, eventually to quit, and I’m trying  my best to keep to a stress free life.  Without Crohns disease, I’m not sure if I’d work on my own happiness, work on keeping stress out of my home.  It takes a lot of work, and there’s a lot to be done.  I can’t say that I’d be as devoted to the whole idea if I was perfectly healthy.

As I’m getting older, moving forward in life, I’m starting to realize some things.  While having Crohns Disease isn’t the ideal way to live my life, it’s not the end.  I’m not stuck in my tracks, and by taking charge of my life, my body, I have a chance to make improvements.  So instead of dwelling about how “life stopped” because I got sick, I’m living life, enjoying myself, and striving to take care of myself and my life.  Chronic illness isn’t the end, just a new way of living.

 

Now if only the infusion nurse would get her butt over here and unhook me.  I am starving, and am looking forward to grabbing lunch.

If it ain’t broke, don’t fix it, surgically remove it.

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Crohn’s is a dirty, dirty, low-blow throwing bitch.  Even worse, my mind is my own worst enemy sometimes when it comes to my treatment.  I have such a hard time accepting the different stages of treatment.  Hell, just page back through the entries, you’ll see the mental dilemmas I went through when I was considering going onto Humira.  (Like that even worked, totally lame!)

Now look at me!  I’ve been getting infusions of Remicade since last year, been on (and took myself off of) 6MP, and am still living on Prednisone.  Add in dozens of antibiotics, muscle relaxers, corticosteroids, and assorted other crap, and I’m pretty sure if my genes didn’t dictate that I am to have cancer, ONE of these meds will have caused it.

Next up on the Crohns To Do List?  Surgery.  I’ve narrowed down S-Day to the first week of December, if my surgeon’s schedule allows (I’ll find out tomorrow, unless my subconscious sabotages me again).   Like I said, I’m still on Prednisone, I’m on my last week of tiering off.  So only a couple of weeks of hell left.  My current mental problem?  Now that I’m starting to feel normal again (starting being the keyword, minus the steroid side effects of course) it’s harder and harder to accept that I need surgery.  When my days are damn near normal, it’s hard to think that I’ll be going under the knife in about a month.

Now now, I realize that I have to be remotely healthy to have surgery, (since it’s not an emergency situation and to get the best possible chance at a quick recovery) but damn, the better I feel, the harder it is to convince myself I need to have part of my intestines removed.  I’ve been putting off surgery for a long time now, feeling somewhat human makes that easier.

On the flipside of that note, I also realize that this fistula isn’t going to heal on it’s own.  Obviously.  I am coming to terms with the fact that I NEED surgery.  That I need to get this taken care of, and once I do that, I’ll actually have a true chance at remission.  I know that if I put this off, eventually I’ll end up with an obstruction that puts me in the hospital for a much more complicated surgery.

 

So time to buck up and deal.

 

And take my stupid pills.

 

Stupid Prednisone.

Missing in Action: One GI Joe – One Uncomfortable Surgeon

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Everyone knows I’m a horrible patient.  I’ve chased away more GI doctors, surgeons and doctor’s assistants than I can count.  My step-ma says it’s typical for a Crohns patient, that most doctors know we all almost have a personality disorder, but alas.  I just dislike doctors and hospitals.

It’s a damn shame that I have to spend so much time in them.

After the last bowel obstruction, my GI finally managed to convince me to have surgery.  It only took 5 years and 2 obstructions, I should give him an award.  Unfortunately for the rest of the hospital and to the delight of my step ma (a doctor there) I chased away the surgeon that was assigned to me while I was admitted.  Then signed out AMA.  Like usual.

However, I did finally go in for my surgical consult.  Step-ma found me a surgeon that according to her and my GI (the only doctor I haven’t chased away.. not for lack of trying) that I will “mesh with”… ie: not destroy.  He seems alright, however it made my day when I managed to make him uncomfortable.  After he described the surgery I said “You know um, hey.  I kinda lost this gi joe figurine like 3 years ago… when you’re like all… in my intestines and what not… and if you find him… please bring him back.  I miss him.”  It was like I kicked his puppy.  Or first born child.  Either way after a good 20 second blank stare and a blush, he laughed.  Which means he’s okay in my book.  So far.

So here’s the deal.  Crohns has destroyed at least a 2 ft section of my small intestine.  For some reason, even though the disease has jumped around quite a bit over the years, it’s always hit this section the worst.  Said section developed a fistula that attached itself to my bladder.  So what I need done is a resection, I’ll lose those two feet and possibly a small portion of my colon, and they’ll remove the fistula and repair my bladder.  Yeah.  I’m 26 years old and I’m having bladder reconstructive surgery.  Oh joy.

Since I no longer have an obstruction, just swelling, it becomes an elective surgery.  The surgeon wants it before the year ends, and I want it before the holidays.  Nothing like major surgery before Christmas.  So I’m aiming for the beginning of December.  I’ll be out of work for at least a week, most likely two, but after that, with any lucky, my Crohns will be in remission for a long time.  Complete remission.  Something I haven’t even had thanks to this damned fistula.

Am I happy about surgery?  Hell no!  It’s something I’ve literally been avoiding for 5 years.  It took major convincing to get me to go on Remicade, even Humira.  Whenever surgery was brought up I just walked out of the office/checked myself out of the hospital.  However, after 5 years of this, I’m tired.  I’m tired of the constant pain, the stomach issues, the 3 year long UTI.  I’m tired of hospitalizations every other month and steroids.  I’m tired of being sick.  Surgery gives me the chance to be healthy, at least for a little while.  So even though I’m terrified, I’m going to hop in the saddle and go for it.

You fuckers better come visit me in the hospital.

Bliss: No blood draws at 2am

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I am aliiiiiiive.  Yup.  Not to mention at home.  I flipped a shit yesterday after having to deal with my “assigned” surgeon and his shit-head-know-it-all logic.  I spent the day doing light exercise, sneaking crackers and water to test my obstruction, and basically arguing with him and his team.  By about 4 pm I had it.  I called my nurses in, my doctors already knew I was going AMA, and told them I was leaving by 6:30 with or with out needed paperwork.

Basically what happened was, I have (had) an obstruction in my small intestine thanks to my Crohns Disease.  Second one in over a year.  Just like last year, it’s not a normal obstruction, just swelling around where the fistula is, blocking the way.  So in order to get the swelling down, I need to be on steroids and anti-biotics.  My GI doctor *is* on board with surgery, but also understands that I need to be at home with my daughter and back to work as soon as possible.  The Urologist and Head PA also understood the need to plan out surgery instead of going gung-ho.  So after chatting with all of them and ignoring surgeon boy I decided it was time to go.  All of them know that I don’t stay for observation.  I am planning and going back to have the resection done, but down the line, when I can arrange time off with work, and get everything taken care of house-wise.

I am feeling much better, that’s mostly because I’m at home though.  I always take my bedroom for granted.  Man I missed sleeping in my own bed and THROUGH the night, even if it was just for a couple of days.  I love my 3rd shift nurses and most of them remember me or get used to me quickly but man do I hate being woken up for blood draws and vitals.  So home and rest it is.  My plans for the weekend are to take it easy.  Heal.  And get spoiled by the boyfriend and kiddo.  I’m a lucky girl.

Happy weekend!

It’s been one year. (Written Earlier)

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Right at this moment, I’m at Highland Park Hospital.  It’s that time again, time for my Remicade infusion.  I come in every 8 weeks for a few hours, get my medication and I’m out!  It’s pretty boring, and I usually have to take off of work to do it, but it helps.  My Crohns Disease has been flaring for the past few weeks, but nothing too major, so I am still pretty grateful for my infusions.

So here I sit, frolicking around the internet while the boyfriend watches Pineapple Express on his phone.  I lost interest as soon as he said the title, so in go my earphones and on goes the music.  So as I was mindlessly searching the internet for something I didn’t already know, I realized something.  One year ago, I was here too.  Except one year ago, I was admitted and here for a week for a bowel obstruction.  I had been facing surgery and was pretty scared, that and bowel obstructions just generally suck… you know, excruciating pain and puking and all that nonsense.  So it’s been almost exactly a year, I’ve managed to keep my ass out of an admission for a whole year (minus a few overnights).  I’m pretty proud of this… I’m taking it as a big giant Fuck You Crohns Disease!  

It’s pretty baffling to think that I’ve been living with Crohns Disease for 4 years already.  Some days it seems like it was just yesterday that I first started showing symptoms,  other days it seems like this has been my life for as long as I can remember… those are the days that I forget what feeling perfectly healthy feels like.  After four years though, I’ve learned that it is something I can live with.  It’s not the end of the world.  Yes, it sucks, yes I feel like I got the short end of the genetic stick, but life goes on.  Through the past four years I’ve learned that life is what you make of it.  Simple as that.

I’m luckier than some though, while my Crohns is not in remission anymore, my symptoms are still not quite severe and I can still function with a little bit of effort.  While my disease could progress much farther and it is working on it, I have a wonderful doctor and very supportive family.  When I need help, all I have to do is ask, when I need a should to cry on, I have one.  I am lucky, and today is one of those days I am thanking my lucky stars.