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Intermittent Fasting and Inflammation

Admittedly, I’ve been hearing about the concept of Intermittent Fasting (IF) for a couple of years now and gave it no thought, as I love food way too much to voluntarily accept any kind of a fast, not to mention that the concept basically flies in the face of everything we’ve been conditioned to accept as gospel in the field of diet and nutrition.  Who hasn’t been told that breakfast is the most important meal of the day, and that skipping meals can slow your metabolism?  Up until recently, I have been a follower of the “eat every few hours” mindset, to avoid blood sugar dropping and keeping metabolism up.  Additionally, I have found that since all my surgeries, I can’t consume as much food as I used to in one sitting, and that smaller, more frequent meals were easier on my system.

If you’ve read any of my posts in the last few months, you know that my Crohn’s Disease has certainly been beating the hell out of me, what with frequent obstructions, ER visits, hospital stays and courses of prednisone.  It’s been very frustrating and I am getting very fed up.  The GI wants me to get surgery to remove the scar tissue and stop some of the obstructions, the surgeon thinks it’s too risky, and basically we’ve been in a “wait and see” mode for far too long with no positive outcome on the horizon.

I’ve adjusted my diet in the last few years to try and keep my body’s natural inclination toward an inflammatory response down; I’ve added coconut oil and flaxseed to my daily diet, removed almost all processed food, and increased my hydration intake.  I practice yoga regularly and quit my very stressful fulltime job, opting for part time work instead, all in the name of declaring a truce with my very temperamental body.  Clearly, that has not been enough.

An article on intermittent fasting a few months ago caught my eye; while so many of the articles I had seen thus far focused on the weight loss and muscular gain benefits of the practice, this one was about the reaction of the body’s inflammatory response to the practice.  I began to do more research on it, and found a lot.  For every article claiming IF’s life-changing benefits, there was another saying how blasphemous it was, etc.  It’s like anything else.  One day fat is bad for you, the next day it’s good, and it is so hard for the general public to get good information when there is so much noise surrounding it because of people’s long held beliefs that “this is what we’ve always done”.

What do I have to lose?  Switching my medications around hasn’t worked, my diet is about as clean as it can get (according to my dietician), and my attempts to find my “inner peace” through yoga are still a work in progress.  While it may seem counterintuitive, so does constantly keeping my immune system suppressed with chemotherapy for the last decade, but that’s what’s keeping me alive at the moment, so…

To be clear, over the next few weeks, I’ll post some of the information I read about the inflammatory response and IF, along with my progress as it seems noteworthy.  While there are several ways to go about IF, I wasn’t too keen on the “eat normally for five days and fast for two” concept, as I know how I can be on day two as an NPO patient in the hospital, and it isn’t pretty.  I’ve elected to do another approach that works well with my schedule and needs, which is fasting for 16 hours each day and eating my meals within an 8 hour window.  This may sound like a lot, but keep in mind sleeping is factored into that time, and typically I don’t like to eat late anyway, because it causes me to get up more at night.  I am fasting from 8pm each night until noon the following day, and then eating a normal lunch, a midafternoon snack, and dinner.  I have increased the size (slightly) of both my lunch and dinner meals to allow for the nutrients that I am missing out on in the morning.  I will be keeping my workouts the same, with circuit training six days each week and strength training three days each week.  Again, I want to get as accurate a picture as possible, so I’m trying to keep my food intake, exercise and sleep schedules the same as they have been thus far.  Currently, I’m on day three, and from what I understand, it can take a week or two for the body and GI system to get acclimated to this new schedule, so I can’t really report any effects yet, though I will say it hasn’t been as bad as I expected.

At no time will I be recommending this plan to everyone with IBD, because each of our bodies are different, and I am certainly not a medical expert.  I fully realize that experimenting with IF will not cure my Crohn’s Disease, my hope is simply to gain a better control over some of my symptoms of late.  My only intent is to try this for myself and share the experience, both good and bad, so that I will have a better understanding as to whether this will help reduce inflammation in my own body for the long term.  If this information proves helpful to anyone else along the way, then that’s simply a bonus.

And away we go.

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The Soundtrack of Life – and Surgery

Most moments in life have a soundtrack, if you think about it.  From iconic movie moments like Judd Nelson raising his fist in the air as the sound of “Don’t You Forget About Me” plays while the credits begin to roll in The Breakfast Club to Matthew Broderick lip synching “Twist and Shout” in Ferris Bueller’s Day Off, music recalls a specific time, place or moment for many of us, good or bad.

Music has been used in medicinal arenas going back thousands of years, when ancient Greeks identified Apollo as the God of both Healing and Music.  One of its more recent proponents, Dr. Evan O’Neill Kane, supported the use of music in the operating room, as he felt it helped “to calm and distract the patient from the horror of the situation”.  And he should know.  This man operated on himself not once, not twice, but three times, in order to better understand the experience of surgery from the perspective of the patient.  In 1919, he performed a self-amputation of one of his fingers after it became infected.  Later, in 1921, he garnered attention from the media for removing his own appendix under a local anesthetic.  As if that weren’t enough, in 1932 he repaired his own hernia under local anesthesia while both the press and a photographer watched, and was back in the operating room performing surgeries on others less than two days later.  Kind of amazing, and at the same time, a little crazy.  But the next little tidbit about him is by far my favorite.  For whatever reason, in the later years of his career, he had taken to tattooing his patients with the letter “K” in Morse Code, rendering his clients primitive versions of what would later become the Cabbage Patch doll.

REALLY?!?!?!  So now I have to wonder what it would be like to go through life with the initials “D.S.” inked on my rear end.  In fairness, the man did a fair amount of work on my behind over the years, and is it really any different than an artist signing his canvas?  Anyway, I digress.  We were talking about music in the operating room, not ass tattooing.

Much more recent studies have also demonstrated the positive effect of music on surgical patients; in 2009, a study of 372 patients found that playing soothing music that echoed the rhythm of a resting heart rate was more effective than typical pharmaceutical treatment for alleviating patient anxiety prior to the administration of general anesthesia.   And while I’m sure some surgeons stick to those heart-soothing melodies, there are probably plenty of others who prefer something a little more…eclectic.   So if surgeons decide on the music they will listen to during an operation based on the type of surgery being performed, it begs the question – “What on Earth do Colorectal Surgeons Listen to During Surgery?”  I only have my own experience to go on, and let’s face it, they very easily could have changed from The Gipsy Kings to something else after I was out cold.  It makes you wonder.  Below is a sample list of songs I would imagine may be on heavy rotation during the course of colorectal surgery.

“Baby Got Back”  Sir Mix-A-Lot

“Shake Your Rump”  Beastie Boys

“Culo”  Pitbull & Li’l John

“Booty”  J. Lo & Iggy Azalea

“All About That Bass”  Meghan Trainor

“Light Your Ass on Fire”  Busta Rhymes & Pharrell

“Low”  Flo Rida

“Back That Ass Up”  Juvenile

“Da Butt”  E.U.

“My Humps”  Black Eyed Peas 

Mind you, this is only my guess and there are plenty more ass-tastic songs that could be added to this list, should you choose to do so.

Early on in our surgical relationship, while prepping for what would be my second surgery, I was wheeled into the operating room and was chatting with the nurses and doctors as they readied everything for the operation, which was to be for the purpose of constructing my j-pouch.  Having one surgery under my belt with Dr. S and many follow up appointments, I had grown comfortable with him, and was enamored with his tendency toward sarcastic and vile humor.  Still, after the trauma of the first surgery, I was understandably a bit nervous, and was using my default method of self-preservation, humor, to keep myself calm.  For those who haven’t experienced it yet, the process of getting prepped for surgery isn’t really a quick one, and between having marks drawn on you where they are going to cut, signing forms saying “I understand I might die”, and watching the instruments getting prepped in the operating room itself, you’ve got ample time to get worked up and start freaking out.

Dr. S came over after he was suited up to speak with me for a couple of minutes, and I saw an ipod on one of the trays near him.  Jokingly, I asked if I could request my own playlist, and he immediately said “Sure!”  and asked what I wanted to hear.  That was a good question.  What do you want to hear when you’re about to be laying comatose on a table, unsure of the outcome, butt naked in front of a group of 8-10 people? ??  Should you go with a classic choice, like “Don’t Fear the Reaper” by Blue Oyster Cult or “Don’t Need This Body” by John Mellencamp, or do you do something more upbeat and optimistic, like “Victory” by Megadeath or “Winning” by Santana?

In the end, I decided that if I was going out, that it should be with a bang, and to the same kind of music that I would listen to on any given day.  So naturally, I asked him if he had any albums by the Gipsy Kings on his playlist.  He smiled, and moments later, the sounds of “Bamboleo” were jamming through the room, and instinctively I started to tap my fingers to the music.  The anesthesiologist asked if I was ready, and I looked at him squarely in the eye and said “Let’s do this shit”.  We had just about come to the end of the song and I was out, waking up many hours later in recovery.

It became a tradition of ours when, just one week later, I was forced to undergo emergency surgery once again to correct the obstruction that had occurred after some of the internal sutures failed and a loop of my small bowel had herniated beneath the pelvic floor.  That time, I was really nervous, because they were clear with me how difficult this surgery would be and what the risks were, and I had no idea what condition I would be in once I woke up.  Two additional surgeons were joining him this time, because they knew I was going to be a mess of adhesions once I was opened up.  As I lay on the now-familiar operating room table and waited for everyone to get situated, Dr. S came over wielding his ipod, and asking me if we should go with the same choice as last time.  I nodded, and felt myself relax a bit as the familiar sounds of “Bamboleo” flooded the room once again.

And so it went, each time I needed surgery, the playlist would be queued up to the Gipsy Kings, and you would think I would have developed an aversion to their music after nine surgeries with it, but I still haven’t.  Each time one of their songs comes on, I still feel the urge to dance, and I’m reminded of the kindnesses of my medical team over the years.  The last time “Bamboleo” was played for me in the operating room was June 6th, 2008.  Yes, you’re damn right I chose D-Day for my last surgery.  I thought it was fitting.  And at this point, you may be wondering “Where the hell is she going with all this?”  I’m about to tell you.

Last week, my husband found out that the Gipsy Kings were coming to Austin to play at ACL, and knowing my affinity for their music, he bought us tickets.  As I went to add the date to my calendar, my jaw dropped and my eyes filled with tears.  The Gipsy Kings are playing ACL on Saturday, June 6th, and I will be there, not staring into the lights above an operating room table surrounded by surgeons, but in the front row of the second level, singing out loud and shaking my hips to the music.

Hopefully that is the last scene in my movie, and though I know that is rather unlikely given my history, I’ll throw in a little fist pump a la Judd Nelson – just in case.

Do No Harm

Another week, another hospitalization.  It had been a somewhat bumpy week after my discharge from the hospital mid-month, and after struggling with what felt like a partial obstruction this past Monday night, I woke severely nauseous on Tuesday morning, and was in the car driving myself back to the ER by 10am that morning while my husband was at work.  It says something that I felt comfortable enough to do this, as a hospital is supposed to be a place of respite and recovery.  Vomiting twice on the 15 minute trip over, I shuffled back into the ER, grateful that I would soon be relieved of my horrible abdominal pain and nausea by the staff there.  So as not to worry my husband, I waited until I was hooked up to IV fluids and had received some anti-nausea meds and happy juice before I called him to let him know I was back in and doing just marvelous.  Everything is marvelous on morphine.  I told him I was fine on my own for a while and not to rush, and was perfectly comfortable dealing one on one with the staff.  I knew what I needed to do.

Once the ER doc came into my room, I spoke with him about a test I needed to have done, something my surgeon had requested the next time I should suffer from a bowel obstruction so that he could get a clearer idea of where things have been going wrong this last couple of years.  A small bowel series isn’t a fun test on a good day – you refrain from eating and drinking all morning only to be asked to chug about 32 ounces of tasteless, chalky liquid down in one fell swoop and then hang around the Radiology unit for a few hours while they take x-rays of your abdomen every 15-30 minutes.  It’s a time consuming test, and having one done during the course of a bowel obstruction necessitates having an NG tube inserted since it’s almost impossible to keep anything down when you’re obstructed.  Having this done was about the last thing I wanted to do, but I knew the information we would gain was crucial, and the ER doc told me that since I was going to be admitted to the hospital, I should discuss the matter with the Hospitalist on staff that day.  In walked the same Hospitalist I had the rather lackluster experience with last week, and I took a deep breath, knowing that my day was about to get a lot more frustrating.

The first words out of his mouth were basically “I told you so” after having discharged me the previous week earlier than he had planned on.  Strong words, coming from someone that didn’t even know I was missing a colon until I reminded him.  As clearly as I could, I informed him of the test I needed to have done ASAP, and that my husband was on the way.  He told me he wanted to get me stabilized first, and said that once I was admitted upstairs we could take the next step.  My husband showed up a short time later and stayed with me until I was settled in my room upstairs before he left for a bit to tend to the dogs at home.  As the nurse came in the room, I asked her when the doctor would be returning to discuss the test I had asked for, and she said she would contact him.  I probably don’t need to tell you that he never returned that day.  I spent a rather sleepless night tossing and turning among the hourly visits from the nurse for pain meds, nausea meds, antibiotic and steroid doses, along with IV fluids.  Shortly after the blood draw at 5am, the obstruction passed and I fell asleep for a few hours.

Wakening again around 7am, I let the nurses know that the obstruction had passed and asked that they reach out to the doctor to let him know so that the NPO order could be lifted and I could try some clear fluids.  No food or drink is hard enough, but when you’re being funneled with 80mg of prednisone at the same time, it’s like taking a fat kid to Ben & Jerry’s and then forcing her to watch everyone else eat pints of ice cream.  I could swear I smelled ice chips.  So I waited.  And waited.  About four hours later, I checked again, and he still hadn’t responded.  Another hour after that I was done.  I decided to take the bull by the horns and lift my own NPO order, knowing full well that clear fluids were what I needed.  I texted my husband who was planning to visit shortly and told him to pick up some water ice and conceal it in a brown paper bag.  He arrived about 45 minutes later and I dug in, only allowing myself to have about a half cup of it, to see if I could tolerate it without any nausea or pain.  As I was putting the rest away, the nurse came in and spazzed out, telling me I was “violating doctor’s orders”.

I’m sorry…orders?  Do you know what it’s called when you do something against “doctor’s orders”???  It’s called “Against Medical Advice” (AMA).  Advice, not orders.  Next time I want some medical advice, I’ll write to Dear Fucking Abby and probably get a quicker response time than I did from this prick.  The essence of my reply in a nutshell?  You’re not the boss of me.

Later that day, the doctor stopped in, all up in arms because I stuck his orders where the sun doesn’t shine.  He told me he wanted to run the small bowel series then, which made no sense to me because the obstruction had already passed.  I tried to convey this to him, and he told me he would speak with my GI to get his okay.  About 20 minutes later, he returned, telling me that Radiology would be up soon to collect me and begin the test, which my GI had allegedly agreed to.  Since I trust the GI, I relented, though I waited another three hours in my room (still technically NPO) before Radiology showed up to take me down for the test.  Let’s just say that chugging 32 ounces of barium on an empty stomach was as hideous as it sounds, and lo and behold, the test revealed that there was no current obstruction.  No shit.

We had one halfway decent exchange, the doctor and I, before he discharged me from the hospital.  He had stopped in to see if I was tolerating the solid food I had been allowed to have, and he made some overtures toward actual, non-clinical conversation.  I had mentioned missing a few days of work, and he asked what it is that I do for a living.  I told him about my years in the hotel industry and how I had left last year for part-time work elsewhere due to the effects it was having on my illness.  “I could see that”, he said, when I told him I was an Operations Director for larger hotels.  I glanced at him with one eye, knowing full well he meant that now he understood why I was such a pain in the ass and always had to be in charge of everything, even during my hospital stays.

“Maybe it’s time to stop working altogether”, he said, and I shook my head and smiled.  “Why not?” he asked.  I told him it was because I had no interest in being a full-time patient, and that, in and of itself, is really the entire basis of this blog.  The fine line between patient and person, living and existing, progressing and deteriorating.  It may be denial, it may be pride, and it may be the rather large streak of stubbornness I carry like a shield, but I refuse to let the increasing number of “bad days” define me.  I still have my moments, and had one that final night in the hospital when I broke down from a combination of exhaustion, hunger, pain, frustration and anger.  It was over relatively quickly, and then things snapped back into place.  That day I may have been a patient, but tomorrow I would not be.  That day I may have been deteriorating, but tomorrow would be different.  In the end, all you can do is hope that you’re as strong as you will need to be to get through the next day.

Latest Hospital Stay, My Thoughts on Hospitalists, and Why I Am a Pain in the Ass Patient

So I had another post all ready to go up, but then I was hospitalized again last Monday night due to another bowel obstruction and a few things came up during that visit that I thought were a bit more important for the time being.  I can’t really say that this hospitalization came out of the blue, as I unfortunately missed my weekly dose of Humira at the very end of January because my husband and I were stuck in Boston for five extra days due to the blizzard that struck.  We had flown out there for the annual memorial service for my father-in-law, and at the time we left, no storm had been predicted for that weekend.  With my pills, I normally bring a few extra days worth in case of emergency, as I did this time, but traveling with injectable medications that need to be refrigerated at all times is a major pain in the ass.  Specialized kits tend to only keep the medication cold for a limited amount of time, and airlines refuse to store them for you in-flight due to the fact that they could be held liable if something were to happen to the medication.  I understand this from working operations in a hotel for many years, but it doesn’t make it any easier.  I did my shot the night before we left and I was set until our return five days later.  Or so I thought.

Once we realized we were going to be stuck for five days longer than planned due to all the cancelled flights and airport closures, I phoned my doctor back home to call in a couple of days worth of my other medications (in pill form) to the local pharmacy in Boston.  Injectable meds are dicey though, in my experience they are regulated more than heroin.  Go figure.  Couldn’t get anyone to ship one Humira pen to the pharmacy for me, so I was out of luck.  At that point, it was essentially a matter of waiting for the other shoe to drop.  Crohn’s doesn’t like to be ignored, and my body got its revenge just a week after we had returned home and I had resumed my normal medication schedule.

Monday afternoon, something didn’t feel right, and by 5pm as I was wrapping up my day at work, the abdominal pains and distension started.  I was home an hour later and drank some grape juice and took both dogs on a long walk, as that sometimes does the trick to get things moving.  Once returned, I lay down with my heating pad and waited for my husband to get home from work.  Things didn’t look good.  He took one look at the glass of grape juice and my heating pad when he walked in the door and knew his day was about to get a lot longer.  I held out until about 8pm, at which point the nausea was becoming severe, before I threw in the towel.

Quickly grabbing my always-packed-just-for-this-purpose overnight bag, we headed to the ER, where there was luckily no wait that evening.  The ER doc on staff that night wasn’t one of my favorites, but she was a bit better this time around, having seen me a few times before.  The usual trifecta of Zofran, Dilaudid and contrast solution was ordered, and then the ER nurse informed me that, but of course, they would have to try and find a vein as well, as the IV contrast that is used for a CAT scan cannot be injected through a standard port, only something now referred to as a “power port”, which is specially designed to handle the type of pressure administered with the contrast without risk of blowing the line.  This was not news to me, as it has happened the last few years when ER visits have come up, but each time it’s like getting hit in the face with a shit sandwich.  My port has been in for almost eight years now, and this “power port” option wasn’t a thing back then.  I guess I kept hoping my rate of ER visits would slow down and it wouldn’t be necessary to look into having my port “upgraded” but apparently it’s time.  I’ll be mentioning that one to my hematologist at my visit next month and can only hope they’ll agree to do it, as it’s kind of a necessity for me at this point, given how often I require CAT scans for obstructions.

Anyway, normally this sucks and they give me some pain meds and I put on my big girl panties and suck it the hell up while the poor nurse stabs at my hand repeatedly, trying to find a vein that won’t collapse.  The other thing about IV contrast is that they only like to use veins in your inner arm for this, not the hand.  I don’t have accessible veins there anymore, and the last few times, I’ve been able to argue my way into an IV in the hand to keep us all sane.  It wasn’t working Monday night.  The nurse just kept shaking his head at me and I wanted to claw his eyes out I was in so much pain.  I looked at my husband and basically asked him to keep me from killing the poor guy who was patiently rubbing, patting and smacking my arms now, trying desperately to feel for a vein that wasn’t going to appear.

After a few minutes of this (and a few minutes after the dilaudid had kicked in and at least calmed down the incredible pain I was in), the nurse told me he had found a suitable vein and I turned my head and waited.  Inserting a needle into a vein is one thing, but digging the needle around inside one’s skin after it’s already been punctured is entirely another.  It felt as if he was using a needle the size of a carpenter’s nail, and I yelled mercilessly.  Miraculously, it only took three more attempts before he was in (I feel a “that’s what she said” joke coming on, but I’ll leave it for now), and then it was time for the go-go juice (the contrast solution you ingest).  I can’t really complain about that too much; while it tastes far from pleasant, nothing is as bad as chugging barium, so I was able to stomach it.

We killed time for the next hour or so, my husband occasionally wandering into the hallway to chase down a nurse when my pain levels went through the roof again.  They switched over to Fentanyl at some point, and that kept things in check a bit more.  After radiology ran the CAT scan, the doctor returned to give us the results about a half hour later.

“You have an obstruction”, she said.  No shit, lady.

By this point it was about midnight, and she recommended a hospital admission until the bowel obstruction would clear, which I expected.  As I said, I always have my hospital bag at the ready, so I had all my basic supplies.  The pain came back, now worse than before, and I remember George standing over me holding my hand while I was shaking violently and uncontrollably before they hit me with another dose of Fentanyl and I was basically out.  We made it up to the room just before 1am, and the night nurse on duty came in to ask me all the same questions I had answered in the ER.  This process has always frustrated me and continues to do so.  Why can’t the ER send this information upstairs?  Why am I answering questions as to whether or not I am a smoker while I am twisted in pain, gorked out beyond belief, and nauseous to the point that I was ready to spew at any given moment?  Dude, if you’ve got something for me to smoke that will fix that shit, PASS IT OVER!

Anyway, my husband got me settled and left, and I spent the next five hours moving from the bed to the bathroom, vomiting like Linda Blair.  They asked me about putting in an NG tube, but I begged for one more hour.  As horrible as I felt, nothing is as bad as that tube.  Sometime after the morning blood draw at 5am, I fell asleep, and woke around 7am when I heard my cell phone ringing.  I always, ALWAYS turn the ringer off on my phone in the hospital for this precise reason, for the fact that someone who has never spent a hellish night in the hospital will inevitably call bright and early the next morning with the well meaning question “How are you feeling?”  George must have turned the ringer back on.  I answered it, spoke five (likely foul) words and then threw it on the floor.  Two hours later, I woke up in pain again, and called the nurse for my dose of Zofran and Dilaudid.  It was time to get the ball rolling, regardless of how little I had slept.

Once the meds hit me I felt a little better, and I spent about 20 minutes in the bathroom in various awkward positions as I brushed my teeth, washed my face and cleaned myself up.  I changed into my sweatpants and a t-shirt I had brought with me and grabbed my IV pole for a few laps around the floor.  That is one thing you must do, regardless of how much pain you are in from an obstruction – you must walk.  The pain medications can slow the system down even more, so walking will help counteract that a bit, and gets things moving in the right direction.

Sure enough, about two hours later I was awakened from my nap by a familiar sensation in my stomach.  I headed to the bathroom and waited, where I was rewarded with what my husband and I now lovingly refer to as a “code brown”.  I knew he was waiting for this news, so I texted him promptly.  He phoned me a few minutes later, telling me he had taken the CAT scan results from the previous night and had them couriered over to the surgeon I had consulted with a few months before in the event that the blockage didn’t clear on its own, so the surgeon would be prepared to operate if needed.  He’s on top of his shit, that one.

I left my room and cruised over to the nurses station to inform my R.N. that things were once again flowing in the right direction, and asked if she could call the doctor to see if he could remove the NPO order from my chart so we could get some clear liquids into me and see how I tolerated them.  It was 11am by this point, so I figured at this rate I could be all set and out of there by 5pm if all went well.  The nurse agreed, and popped her head in about 20 minutes later to say that the doctor wanted to see me in person first, and that he should be in to see me shortly.  Okay, no problem.

I am a pretty reasonable person, all things considered (though my husband will dispute this), and gave him until 1pm before I went back out to the nurses station.  I asked if she could contact him again to get the NPO order lifted, just so we could start clear fluids.  He could come by anytime later on, see I was doing fine, and progress my diet from there.  She called him again, and he gave her the same answer.  By this point, not only was I pissed off, but I was hungry, thirsty and cranky….I was “hangry”.  I retreated to my room to rest and stew for a bit more, but by almost 2:30pm, I couldn’t take anymore.  Fuck this.  I grabbed my IV pole and cruised down the corridor, looking for the pirate’s booty, the fridge tucked in a corner of one of the nurses stations stocked with things like popsicles and water ice.  They had moved it behind a locked door since my last visit, the sonsofbitches.  Undeterred, I made my way to the waiting area by the elevators and made myself a cup of plain hot tea.  Walking back to my room, I sipped it slowly, and as I approached the door a man wielding a stethoscope appeared next to me.

“Who approved that?” he asked, glancing at the cup of tea in my hand.

“You should have, four hours ago”, I responded, done with all niceties as we entered my room together.

He began to run through the symptoms in my chart, and stopped when he saw that my medication list included Lomotil, an anti-spasmodic.  He asked how long I had been on it, and when I replied almost eight years, he looked like I had just told him I had three tits.

“So you’re telling me that you’ve had chronic diarrhea for the last eight years?” he asked me incredulously, his eyes wide.

Oh, this is bullshit, I thought to myself, smiling sweetly as I looked at him knowing my next phrase was going to knock him clear off his chair, since it was obvious at this point that he hadn’t fully read my chart.

“No, I’m telling you I haven’t had my colon for the last eight years”, I responded, watching a blank look come over him ever so briefly, before he attempted to breeze past that and convince me that he had known all along.  He continued on in a monologue, telling me we should start clear fluids that evening to see if I could tolerate them (genius!) and then that we could progress to a full liquid diet in the morning and look at a possible discharge then.

Beating around the bush has never been my strong suit, and having nothing to eat or drink in over 24 hours, not to mention only about 3 hours of sleep, I was in somewhat rare form.

“How about this?” I proposed.  “Since I’ve already had some ice chips and tea over an hour ago and feel fine, I’ll order full liquids now, since there’s really no reason to wait.  You can write the discharge papers and leave them with the nurse, and that way if I’m tolerating everything fine this evening, I can go home.”

It wasn’t really a question.

He agreed and just tried to get the hell out of there before I could piss him off even more.  I waited about 15 minutes and stopped by the nursing station.  “Did he clear me for liquids?” I asked the nurse.  She looked at me apologetically and told me he hadn’t relayed any information to her yet.  I informed her of our conversation, she smiled and called him to confirm this.  Once he had, I asked her to contact the dietician as well.  It was go time, no more delays.  Mama was hungry.

Back in my room, I phoned the dietician’s office and ordered what I considered a restrained meal of rainbow sherbet, tomato soup, a yogurt smoothie and chocolate pudding.  When it was delivered 20 minutes later, I inhaled it as if it were my last supper while watching “Sex and the City” reruns on TV.  Tired and finally sated, I made one more trip out to the nurses station to ask my RN to de-access my port before she left for the day, as the last few times when I was discharged late, not many of the staff knew how to do it.  They were running all my fluids through the damn IV in my arm anyway, so there really wasn’t a need.

She stopped by my room about 10 minutes later and quickly got me disconnected, and I fell asleep, woken only when my husband walked in the room a couple of hours later.  As I still felt fine, I decided it was time to go home, and my RN was quick to bring over my discharge instructions and remove my IV while my husband packed up my things.  Fifteen minutes later we were home, and I passed out in bed almost immediately and slept until the following morning.

The reason I bring up my interaction (or lack thereof) with the doctor on this particular visit is not to diminish his knowledge or authority in any way, but to highlight the fact that since the inception of doctors known as “Hospitalists”, I have had more issues with my hospital stays than I can ever remember since the time when your own doctor or specialist personally came to the hospital to see you to decide on your treatment and possible discharge.  Hospitalist doctors go to medical school and often complete their residencies in general internal medicine; some go on for additional training for hospital-specific care.  I’ll be the first one to say that, as someone who has a parent that is a Doctor, I completely understand why they would rather have this system in place than having to sacrifice what little sleep and rest they do get to run to various hospitals every evening to see their patients after regular office hours have ended, not to mention always being “on call”.  It’s insane.  To be able to delegate “making rounds” in the hospital to another doctor who solely does this for a living makes sense, at least from the hospital and physician’s point of view.  When it comes to the patient though, I don’t necessarily know that this is for the best.  For many people in good health, a hospital stay is a rare occurrence caused by an accident or random illness, and for them, the care provided by a Hospitalist is probably fine.  However; when it comes to those with chronic illnesses, the hospital stays are often more frequent, the medical history is much more extensive and there are a number of confounding factors that are better addressed by a specialist, at least in my opinion.  While my GI doc will often visit me in the hospital on his own accord because of the complexity of my illness and our longstanding relationship, some patients don’t have this luxury, and with this last hospital stay, my GI happened to be out of town.  It would have been nice to have another GI from the office stop by to talk to me, as then I probably wouldn’t have had to wait almost four hours for an NPO order to be removed once my system had started functioning or explain the fact that I’ve been on Lomotil for eight years because I don’t have a colon.  My GI doc knows me and has seen me both healthy and less so, and therefore has a “control version” of me by which to compare my current condition to.  A Hospitalist does not have that point of reference, nor the time, I’m sure, to read through volumes of a patient’s medical history before stopping in to see them.  And then let’s talk about bedside manner for a moment, as I am a veteran of the hospitality industry myself, and this is something that is important not just to me, but many patients.  By its very nature, a Hospitalist position isn’t designed to really develop any kind of relationship with the patient (and no, I’m not talking about the dreaded “transference”) and instead operates at a distance and a level of disconnect that (in my opinion) would tend to attract the very sort of individual that doesn’t have the appreciation for patient relationships or interaction very much at all.  And is that really the sort of person you, as a hospital, want to hire?  Is that really the sort of person you, as a patient, want caring for you as your doctor?   When it’s a specialist you’re going to see, if you don’t like them for one reason or another, you have the option to search for another physician.  You don’t have that same opportunity as a patient in the hospital, at the mercy of whomever is on duty.  Sure, someone doesn’t need a shitload of personality to graduate from medical school, and some would argue that the education doctors receive there is almost geared toward removing the empathy from their students so as not to let it cloud their judgment or decision-making.  Again, I get it.  But is it really so unreasonable to expect a little personality, a little empathy from someone who spends all day dealing with patients in a hospital setting?  Is it possible that the hospital should sponsor some sort of quarterly or at least annual training centered around hospitality and bedside manner for doctors holding this position?  Should regular rotations through specialized areas such as gastroenterology, etc. be required, given that due to the very nature of chronic diseases, you as a physician would be seeing patients with these on a more frequent basis in a hospital setting than you would say, someone who just happened to be in a car accident?  Is it even realistic for a patient to expect that?

Regardless of what the answer may be, it’s pretty clear that our current hospital system is broken on many levels, from the perspectives of both patient and physician.  Patients want to see someone who knows them, or at least is familiar enough with their disease, current condition and emotional state to make a connection and not make them feel like a number.  Physicians both need and deserve to be able to sleep on at least a semi-regular basis to keep them at optimum functioning levels for making the often life-and-death decisions they are faced with every day, and simply shouldn’t have to spend hours every night running to the hospital to ensure their patients are receiving the best care.  I don’t envy their position in the least.  There has simply got to be a better way.

Coping with PTSD

A bit of a delay from the last post; my husband came down with a bad cold just after returning to work in the New Year, and despite my best efforts (sleeping in the guest room, wiping down everything with Clorox wipes and practically hosing him down with Lysol every day), less than 24 hours after he was feeling human again, I woke up with a fever of 103 and it turned out to be pneumonia for the third time in just over a year.  It’s taken me over a week to kick most of it out of my system, and now I’m just left with the residual exhaustion and coughing fits.

Anyway, now that I’m back, I thought that it would probably be a good time to discuss PTSD, given everything in the news lately with the premiere of American Sniper and the upcoming trial of the man accused of killing the movie’s real-life subject, retired Navy Seal Chris Kyle.  Many people are familiar with the acronym, but most tend to identify it with military veterans or those who have been witness to acts of war; however, PTSD can also occur after a lengthy or traumatic illness, both of which some of those with IBD can certainly identify with, myself included.   I’ll include the full diagnostic criteria below; while lengthy, I think it’s important to realize if PTSD may be affecting you or someone you care for.

In 2013, the American Psychiatric Association revised its definition of Posttraumatic Stress Disorder (PTSD); the criteria for which is detailed below:

Criterion A: Stressor – The person was exposed to death, threatened death, actual or threatened serious injury, or actual threatened sexual violence, as follows (one required):

  • Direct Exposure
  • Witnessing, in person
  • Indirectly, by learning that a close relative or close friend was exposed to trauma. If the event involved actual or threatened death, it must have been violent or accidental.
  • Repeated or extreme indirect exposure to aversive details of the event(s), usually in the course of professional duties, (e.g., first responders, collecting body parts; professionals repeatedly exposed to details of child abuse). This does not include indirect non-professional exposure through electronic media, television, movies, or pictures.

Criterion B: Intrusion Symptoms – The traumatic event is persistently re-experienced in the following way(s): (one required):

  • Recurrent, involuntary, and intrusive memories. Note: children older than six may express this symptom in repetitive play.
  • Traumatic nightmares. Note: children may have frightening dreams without content related to the trauma(s).
  • Dissociative reactions (e.g., flashbacks) which may occur on a continuum from brief episodes to complete loss of consciousness. Note: children may reenact the event in play.
  • Intense or prolonged distress after exposure to traumatic reminders.
  • Marked physiologic reactivity after exposure to trauma-related stimuli.

Criterion C: Avoidance – Persistent effortful avoidance of distressing trauma-related stimuli after the event: (one required):

  • Trauma-related thoughts or feelings.
  • Trauma-related external reminders (e.g., people, places, conversations, activities, objects, or situations).

Criterion D: Negative Alterations in Cognitions and Mood – Negative alterations in cognitions and mood that began or worsened after the traumatic event: (two required):

  • Inability to recall key features of the traumatic event (usually dissociative amnesia; not due to head injury, alcohol, or drugs).
  • Persistent (and often distorted) negative beliefs and expectations about oneself or the world (e.g., “I am bad”, “The world is completely dangerous”).
  • Persistent distorted blame of self or others for causing the traumatic event or for resulting consequences.
  • Persistent negative trauma-related emotions (e.g., fear, horror, anger, guilt, or shame).
  • Markedly diminished interest in (pre-traumatic) significant activities.
  • Feeling alienated from others (e.g., detachment or estrangement).
  • Constricted affect: persistent inability to experience positive emotions.

Criterion E: Alterations in Arousal and Reactivity – Trauma-related alterations in arousal and reactivity that began or worsened after the traumatic event: (two required):

  • Irritable or aggressive behavior
  • Self-destructive or reckless behavior
  • Hypervigilance
  • Exaggerated startle response
  • Problems in concentration
  • Sleep disturbance

Criterion F: Duration – Persistence of symptoms (in Criteria B, C, D and E) for more than one month.

Criterion G: Functional Significance – Significant symptom-related distress or functional impairment (e.g., social, occupational).

Criterion H: Exclusion – Disturbance is not due to medication, substance use, or other illness.

It is also possible to experience PTSD with dissociative symptoms (experience of being an outside observer or detached from oneself) or with delayed onset, where the full set of symptoms is not experienced until at least six months after the trauma(s).  While these last two are not necessary criteria for diagnosis, they are experienced by some.

My own experience with PTSD symptoms began somewhere in the final bleak months before the first emergency surgery to remove my perforated colon.  The pain had reached a point where I could completely identify with the dissociation described, and I still firmly believe this was my body’s way of trying to protect me on some level.  However, the actual full-blown PTSD symptom profile didn’t hit me until after the obstruction surgery in March of 2007.  By that point, there had been several major surgeries and a good deal of physical trauma to my body, but it was that surgery that put it over the edge.  I think it had to do with waking up from anesthesia, once as I was literally being wheeled out of the OR and either came out of it too soon or the breakthrough pain medication wasn’t enough to calm the feeling that I was being ripped in half at the abdomen.  I don’t know that my eyes ever opened, but I remember screaming that I was in pain and writhing on the gurney while several sets of hands were holding down my arms as I attempted to claw at the searing pain in my stomach.  What I did not know at the time was that there was a nine inch long incision that was left wide open due to a high risk of infection.  I remember lots of voices talking and then feeling several people sit me upright and lean me into the chest of someone else, presumably another doctor or nurse, so they could expose my back and put in an epidural to block the hideous pain I was in.  I never saw any of their faces, but I remember the person in front of me cradling my head against his shoulder as he supported my weight and tried to comfort me quietly while the people behind me handled the epidural.  I still remember his voice in my ear telling me to hang on, and that the pain would be over soon.  Then things went black again, and I was drugged with enough morphine that I didn’t truly “wake” for almost another day, at which point hearing all of the machines beeping and seeing all the tubes coming out of me was enough to send me into an immediate panic of knowing that something had gone horribly wrong.

It was after that surgery that the sleep problems started; while I would be completely exhausted and desperate for rest, sleep would not come.  When it did, I slept fitfully, waking after 20 or 30 minutes clawing at my arms or abdomen from vivid nightmares, occasionally drawing blood.  I felt like some sort of alien, completely removed from the scope of human existence and angry that they hadn’t just let me die instead of suffering like this.  Florescent lighting must have triggered memories of being wheeled into the operating room, as my blood pressure would surge, my breathing would become labored, I would get tunnel vision and people’s voices around me would become muffled, as if I were hearing them underwater.  The doctors tried sleeping pills to help me at least catch up on some of my rest, but many of them left me either completely indifferent to their effects  or wandering the street in my pajamas at 2am with absolutely no recollection the following morning of what happened.  Finally, after five or six failed attempts, I was put on 30mg of Restoril, a benzodiazepine that helps with anxiety as well as sleep, which worked, and I still have to take to this day in order to sleep.

Finally being able to sleep without the horrible nightmares gave me some relief, but I was brought crashing back into that hospital room one day when, while walking through the mall near the men’s fragrance counter, I caught a whiff of cologne that immediately sent me into a panic attack.  Couldn’t breathe, couldn’t see, couldn’t hear; as I crumpled into a ball on the nearest bench, I felt my head being cradled against a shoulder and heard a man say softly again “hang on, the pain will be over soon”.  I realized later that day that must have been the scent the male nurse or doctor was wearing as I was leaned into him so the epidural could be administered.  This episode happened almost two years afterward, and to this day, if I so much as catch a whiff of that same scent, I am immediately transported back to that moment.  Probably not the kind of brand recognition Ralph Lauren had in mind.

While the worst of the effects have thankfully passed thanks to a good bit of therapy, I do still get the occasional nightmare that will wake me or leave me with deep scratches on my arms, and even now, almost eight years later, I still struggle with dissociating from my body in intimate situations, probably the result of being poked, prodded, cut and eviscerated so many times over the years.  It’s hard to be touched in certain areas (basically anywhere from my ribcage down to my bum) and not feel as though something bad is about to happen when that has been my experience for so long.  I have to really work at staying in the present during those times and not let myself regress into the past, and it’s not easy.  Luckily, my husband understands this and is patient with me.   At some point I probably will try biofeedback or something like it to see if that helps, as it has gone on long enough.

The bottom line is that PTSD or similar symptoms don’t have to rule the rest of your life.  A trauma survivor once said it best: “Some people’s lives seem to flow in a narrative; mine has had many stops and starts.  That’s what trauma does.  It interrupts the plot.  You can’t process it because it doesn’t fit with what came before or what comes afterwards”.  Whether you are experiencing just a couple of symptoms or the full spectrum, there are dedicated professionals out there to help you cope, not to mention those who have been down the road before themselves and come out on the other side.  All you have to do is ask.

Relationships, Marriage and Obamacare

I’ve been sitting here stewing about this post for the better part of a week now, and though I know it is something that I need to talk about, it is something that makes me uneasy, as if somehow recalling or mentioning it will bring me right back to where I was that fateful November day seven years ago.  Seven years ago, not eight.  As I’ve mentioned before, November 2nd, 2006 was the day of my emergency colectomy due to Toxic Megacolon and the beginning of my surgical journey, which commenced a bit more than eight years ago.  What few people know is that exactly one year later, on the chilly afternoon of November 2nd, 2007, I got married.

While far from a perfect solution to our country’s healthcare crisis, I often wonder how the course of my life would have changed had Obamacare come to fruition that year.  A big believer in fate, I’m fond of the saying that everything happens for a reason and while I am grateful for where I am at today, there were some really rough years getting here.  I’m probably getting really vague and will apologize for that now, as this will probably be a somewhat messy and disjointed post, but that’s how all these memories still come up for me – a jumbled heap of highs and lows, of ill-fated decisions made in the depths of a health and well-being crisis so deep that I’m still climbing my way out all these years later.

I had been diagnosed for about two years and my symptoms were somewhat stabilized the summer of 2004 when I started dating my first husband.  Never one to beat around the bush, I was up front with him about my diagnosis on our first official date, and didn’t really sugar coat anything.  I figured if he could handle it then maybe he was worth keeping, and if he couldn’t, I was better off on my own.  He took it well, and our relationship moved fairly quickly from that point, with us moving in together about five months after we started dating.  He was ten years my senior and had been married once before; while I was only 24 at the time we started dating, I knew I needed someone who could handle the difficulties of my illness, and he seemed unfazed by all of it.

Though my symptoms would return with a vengeance and then wane a bit, I was able to maintain an insane work schedule during this time, at one point working three jobs in order to be able to pay for my mounting medical bills (thanks to the 6MP causing pneumonia, hemolytic anemia and bone marrow suppression, I was stuck with about $7,000 in hospital bills) in addition to rent and other expenses.  Monday through Friday I worked as a counselor at a local mental health facility, weeknights at Ann Taylor and weekends at a hotel – I’m exhausted just thinking about it now.  We moved a few times, mostly to accommodate his job changes as he was much farther along in his career than I was at the time.  Both of us seemed content to keep things the way that they were; I don’t think he really saw a need to get married again after his first had ended in divorce, and I never really thought about it much.  Being the child of a divorce had impressed upon me that a piece of paper does not a relationship make.

I guess it was in the beginning of 2006 that things began to get a lot worse with my disease.  Many of the details up until the first surgery are such a blur, so it’s hard to pinpoint exact time frames.  I know we had moved again, this time to northern NJ, as I remember having to commute about an hour south to visit with my regular doctors whom I had kept as it was too much of a pain in the ass to try and get situated with new ones when things weren’t even close to being stable.  The 6MP wasn’t really working, and I was on massive doses of Prednisone, which couldn’t have made me very easy to deal with.  He was often there for me if I needed someone to talk to, and he began to see the very ugly side of this disease that few people knew about.  I slept all the time, my hair was falling out, and I spent hours in the bathroom every day.  I remember being constantly amazed that he didn’t just walk out.

By mid-year I was barely hanging on to my full time job, as it was taking superhuman amounts of strength and energy just to crawl out of bed every day.  September and October of 2006 were months that I’d rather forget, as my body wasted away more each day and I really thought that I was going to die, either from the disease itself or the incredible amount of pain I was constantly in.  The final days of that October he had driven me to the hospital after I couldn’t even keep water down and the skin on my stomach was turning a mottled purple color, which later turned out to be from the necrosis of my own intestines inside of me.  Awesome.

Without having to go back into all of the surgery details again, obviously I emerged from that hospital stay with an ileostomy and a newfound hatred of my body.  I no longer considered myself human, and couldn’t understand how anyone would ever look at me the same way again.  And still, he stayed.  He proved to be very insightful over the months that followed, and never seemed to view me any differently than he had before the surgery.  My job had afforded me paid short term disability, which was a blessing as I navigated the long road ahead to recovery.

Of course, in the months that followed, there were more surgeries and more deterioration in my health, which we’ve gone into already and I really don’t want to rehash again.  I was able to return to work briefly before the ill-fated obstruction surgery in March 2007, and once again I was happy to be able to make use of the short term disability offering afterward, as I wasn’t able to return to the office until late July of that year given all of the recovery that was needed.  I had thought I was in the clear at that point, given that the reversal of the ileostomy had been completed the month before.  I was living with a friend temporarily at that time, as right after the obstruction surgery my ex had received a job offer he could not refuse.  I wasn’t able to move with him at that point being that I still needed the insurance that my work was providing, so he had packed up our apartment and moved in with my family outside of Philadelphia until I could find some work in that area.  He began to talk about wanting to buy a house, and I was desperate for any kind of stability I could find at that point.  We had moved around so much in the last two years, and my body was constantly changing the rules of the game on me, and…he had stayed.  I figured if he had stayed with me through all the shit in the previous two years and whatever my disease had in store for us in the future, it was the least I could do to humor him and look around at properties.  I still remember trying to find something to wear the day we went out looking with the real estate agent; after six weeks in the hospital on a feeding tube after the obstruction surgery, I had lost an astonishing amount of weight and absolutely nothing in my closet fit me anymore.  I have no idea why that memory sticks out, but it does.  I don’t think I expected that we’d find something so quickly, but there it was, a two bedroom condo conveniently located to Philadelphia and in a nice neighborhood.  Before I knew it, we were putting in an offer, and I was happy I would finally have a place to call home for a while.  After three moves with him and so many hospital stays, I was starting to feel very much like a nomad, and I craved anything with permanence.  It was a chaotic time, but I really thought the worst of the Crohn’s was over.  We closed on the condo that September, just two days after the fistula symptoms had started.

There were a flurry of visits to gynecologists, surgeons, GI’s, and we all knew I was in for more surgery.  My parents began talking to me about leaving my full time job, as it was draining me and they wanted me to focus on my health and the long recovery that was going to lie ahead.  The location of the condo had meant that my commute was now an hour and a half each way, and the strain was taking its toll.  As much as I resisted the idea, I saw their point, and we began looking at insurance policies to see what I could sign up for so that I would have the medical coverage needed in the months ahead.

I expected premiums to be incredibly high, of course, given my pre-existing condition.   Never did it occur to me that I would be flat-out denied by every insurance company we approached.  Blue Cross, Cigna, United Healthcare, Aetna…the list went on.  My mother, a Nurse Case Manager,  got on the phone and did her best to try and weave through the bullshit they were burying us in, but the bottom line was simply: No.  Denied.  So the question then became, now what?

In the midst of this I went back into the hospital for more surgery, this time to re-divert my j-pouch to a loop ileostomy so that my system could rest while I began a course of Remicade infusions to attempt to heal the fistula.  They placed setons in the other fistula during this process as well, and the result was a pain so constant and uncomfortable that I practically lost interest in anything other than painkillers, which included food.  My weight started dropping steadily again.  It wasn’t pretty.

I honestly don’t remember who initially came up with the idea; it may have been each of us at one point or another.  At the time, my boyfriend and I had been together for three years and now jointly owned a home, so it didn’t seem such a far stretch to get married.  I don’t believe either of us saw it as a temporary fix either, it just seemed like a natural progression of things that would answer the most immediate and pressing need of me getting some health insurance so that I could leave my full-time job, which my body was struggling with every single day.  I know I loved him, and I truly believe that he loved me as well, so it just made sense.  Since we needed to arrange things quickly, both of us got on the phone with just a few immediate family members to let them know what our plans were, and we set a date for the following week.  I was barely two weeks out of surgery.  I made it clear to my parents that I did not want anyone else to know right away, even my siblings, because I didn’t want them to associate my getting married with being sick.  In reality, I don’t think I wanted to make that association in my own mind, because at this point, I was fairly certain that my life wasn’t going to be a long one, and I wanted to keep things as “normal” as possible.  I figured if we had time, we could plan an actual “wedding” for the following year, which would allow our families to celebrate together and would give me something other than my rapidly deteriorating body to focus on.  Had I not had that distraction, I’m pretty sure I would have given up any and all hope of ever recovering.

The day was crisp and cool, and I wore a long white coat so that in pictures you couldn’t see how much weight I had lost.  I was happy, but that day I began to feel as though I was trying to check off items on a bucket list before time ran out.  I could see the looks reflected on my parent’s faces that day; though their smiling faces appeared happy, their eyes told a different story, as if they knew this wasn’t the best choice, just the only one that was available to us at the time.

I don’t mean for any of this to reflect poorly on the man that became my husband that day.  He had many good qualities and could have run for the hills any number of times in our three years together at that point, yet he did not.  The last fact was really the only one that mattered to me by that point anyway – he didn’t leave.  I don’t really think either of us were prepared to make that kind of commitment that day, and to this day I wonder if he felt pressured into it due to my rapidly failing health.  No one should ever be put in that position.

A few days later, we got me signed on to his insurance policy at work, and I gave notice at my job.  I still needed some sort of income, though my parents had said they would help us bridge any gap in order to cover our expenses until I was well enough to work full time again.  I spoke to my old boss at the hotel up north and once again, he was amazing, telling me that he would give me a few shifts each week and put me up at the hotel during that time so I wouldn’t have to worry about the hour and a half long commute to and from our home.  I approached my new husband with this information so we could work out how often I would need to work and what he could do to help out in the short-term, and was stunned when he told me he didn’t want to work any extra hours on top of his full time job.  Granted, I wouldn’t have wanted to do that either, but for a short term period of time I absolutely would have stepped up to the plate.  Again, I reminded myself that I was lucky he stayed with me at all, let alone married me, so I called my boss back and told him I would take four shifts each week at the hotel, which was only slightly less than I had been working before at my full time job.  I convinced my parents it would be okay, and they trusted my boss enough to know that if it became too much for me he would be the first one to say so.  My parents told me not to worry about the financial part of things, and while none too pleased with their new son-in-law, they helped me out with the difference each month so I could pay my half of the mortgage and my other expenses.

This arrangement went on for about six months, during which time I was able to focus more on my health, get rest and gain some much needed weight.  I drove up to the hotel on Thursdays and worked shifts Thursday evening through Sunday morning, when I would make the drive back down south.  On my days off, I went to doctor appointments, got Remicade infusions and rested.  We started planning details for an actual “wedding” as well, which was set for September of 2008.  It gave me a welcome distraction from the train wreck my body had become, as well as a goal to work toward while going through infusions, surgeries and recovery.  As I got stronger, I began looking for a full time job again in the Philadelphia area; though I wasn’t out of the woods yet at far as surgery was concerned, I felt bad about my parents having to help me out and wanted to support myself again.

The job search didn’t take too long, and I vividly remember suffering through a few rounds of interviews while the pain from the setons stabbed uncontrollably.  I have no idea how I faked being “normal” during the interview process, but they bought it, and I was offered a job the next day.  A few days into things, I stopped by the HR Director’s office and told her about my health history, letting her know that I would likely be needing more surgery in a couple of months to reverse the temporary ileostomy.  She was supportive and told me I didn’t need to worry.  The job turned out to be working with a great team, and I had a lot of support there.  The hours were long, but I didn’t care, because I was honestly happier there than I was at home.

Things continued on with the planning of the wedding reception despite the tension that was mounting at home.  My husband was becoming more and more frustrated with some of the complications from my illness, not that I could blame him.  A chronic illness in a marriage is like an unrelenting third wheel, the inconsiderate and ill-mannered relative who moves in and simply refuses to leave.  I continued to meet regularly with my surgeon as we progressed through the treatment plan, and I was laser-focused on a takedown surgery date by the end of June to ensure that I would have enough time to recover from that surgery in time for the wedding reception.  I had made it clear to him early on that there was no way I was walking down the aisle with an ileostomy, and he knew I meant it.  All was going well until one visit in May, when we realized that the Remicade wasn’t going to fully heal the fistulas on its own.  I would need a small graciloplasty to repair the remaining opening, using a piece of muscle from my inner thigh.  After telling me this, Dr. S sat down in front of me and took both of my hands in his, telling me that while he fully understood and appreciated my goal of being ileostomy free by the time of the wedding, it wasn’t likely going to happen at this point, as I would need recovery time after the graciloplasty to see if it worked before takedown could be done.  I was devastated.  My eyes filled with tears and my voice shaky, I told him I was confident we could still make our goal, but if he honestly felt I couldn’t handle the final surgery so close to the wedding date that I would respect his decision.

I went in for the graciloplasty the following week, which was a fairly minor process and I was only out of work for a few days.  I continued to keep the image of myself, whole and in one piece, celebrating with my family on the day of the wedding, and it was around that time that I began to admit to myself that this reception was far more about me showing everyone that I had beaten my disease than it was about celebrating the union with my husband.  If nothing else, I wanted one day where I felt and looked beautiful, that I could be surrounded by my friends and family in celebration of life.  Whatever else happened after that, I knew I would always have that day, and that was all that mattered.

By the end of June, my checkup visit with Dr. S revealed that the graciloplasty had healed the remainder of the fistula, and at that point, there was just one decision left to make.  We could go ahead with the surgery to reverse the ileostomy, which would have given me roughly eight weeks to recover to enjoy my big day, which Dr. S felt was not enough time.  I sat there and looked him straight in the eye, reminding him of all our history together and how many times I had defied the odds against me.  I knew it would be a lot of work, but I knew I could do it.  He looked at my face and his expression softened, and he told me that despite all the evidence to the contrary, he believed me.  We scheduled the surgery for the final days of June.  I was almost there.

Takedown surgery was a breeze compared to all the other surgeries I had in the past, and I was out of the hospital in four days.  I took a week off of work, and was going for dress fittings while there were still staples in my abdomen.  I didn’t care.  I took one look at myself in my wedding dress, all put back together, finally whole again, and I burst into tears.  The poor Italian seamstress thought she had done something wrong, and all I could do was thank her, smiling and sobbing at the same time.

My family began arriving for the wedding only weeks later, and the day was everything I had hoped it would be.  As I walked down the aisle that day, I looked at each of the smiling faces around me and thought of all the support each of them had given me over the past several years.  I thought of all the hurdles I had jumped to get here and how much I had fought through the last six years.  I wondered how long this surgery would last for before the next one was needed.  I wondered how long my husband could hang in there for, and if we had done the right thing by getting married the year before.  He looked happy that day though, regardless of the horrible fight we’d had only the day before on the way to the rehearsal dinner.  He was still upset that our honeymoon had to be delayed by two months as it was out of the country and I couldn’t get cleared medically to go until the beginning of November.

The honeymoon came and went, and while we had a wonderful time wandering around Rome and Tuscany, we were simply different people who wanted and valued different things.  Once we returned home, I threw myself into work again, much happier there than I was in my downtime at home.  As my self-confidence grew from flourishing in my career and taking control of my disease (at least for the time being), I began to realize that someone not leaving you isn’t the same as someone loving you.  We retreated more and more from one another until I made the decision that I had fought too hard for too long to simply stay married because he played the trump card of not leaving me when I was sick.  Both of us deserved better than what we were giving each other, and I think our reasons for being together had simply run out.  We separated two years after we married, and I didn’t know if I would ever find someone again, but I knew someone simply “staying with me” was no longer enough.  I remember my stepmother bursting into tears as I told her that, finally seeing that I was beginning to establish my sense of self worth again after living as a shell of a human being for the last five years.

I remain grateful to my ex-husband for offering the support he did during a very difficult time in my life.  I am certainly not the easiest person to deal with, and my disease threw us more than our fair share of curveballs over the years.  I still feel guilty that he had to marry me under the circumstances he did, but that was our life at the time and I think we each answered a need in the other.  I was lucky to come out of that with a very clear picture of the type of person I did want to share my life with, and am happy that we just celebrated our second anniversary last week.

So the next time someone starts bashing Obamacare, take it from someone who didn’t have that option, and the multiple lives that were forever altered because of that.  It may not be a perfect solution, but insurance should be available and accessible for everyone, not the chosen few who are fortunate enough not to have drawn the short straw when it comes to their health.

Getting Fit in the New Year

With the New Year fast approaching, lots of people will be making those often ill-fated “resolutions” in the eleventh hour, promises that they will better themselves in every possible way, eliminating any bad habits for good.  For many, one of the top resolutions is some variation on the theme of getting in shape, losing weight, etc.  Such a goal is often difficult for many, particularly for those with a chronic illness and possible physical limitations.  The inclination tends to lead more often than not to the extreme, the dramatic and the not-very-sustainable category, one that can be particularly detrimental to those whom are already working from a physical and nutritional deficit.

Gyms and other fitness centers will hop on this all-in-or-bust attitude, and discounts on memberships and personal training sessions abound during this time of the year.  It is certainly tempting, and can be a great thing if you use your head.  I am all for getting in shape and using exercise to help combat stress and enhance one’s mood, but there are a few things you need to be mindful of, whether you are in perfect health or not.

“Personal Training” can mean many things, and while this statement is certainly not applicable to all gym staff, many of them have taken only basic courses to certify them in personal training, and are simply using the profession as a stopover on the way to some other professional destination, rather than treating it as a career in and of itself.  Just because someone is certified in fitness doesn’t necessarily mean they have a firm understanding of the mechanics of the human body, let alone one that is chronically ill and/or surgically altered.  While the old saying “you get what you pay for” can certainly apply in these situations, it really goes beyond that, as many of us need someone familiar with those with physical limitations.  It’s all fun and games until someone gets a hernia, something that anyone who has had abdominal surgery is at a higher risk for.

One of the benefits of having had as many surgeries (and subsequent recoveries) as I have is that the physical therapy that follows each surgery is often very informative in the long run when it comes to physical fitness.  There you are, with an actual Physical Therapist, trained for many years in body mechanics and the overall recovery process.  While you may not appreciate it at the time, this is a wonderful thing.  Should you find yourself in this situation, use the time wisely, and pick their brains during sessions.  Ask questions about what exercises to do, and what to avoid given any physical limitations you may be dealing with.

So what if you don’t have access to a physical therapist right now?  First, keep in mind that things don’t have to be complicated to be effective.   Walking is one of the most effective exercises that can be done by virtually anyone; even in the worst stages of my recovery after the obstruction surgery that left me with a nine inch open abdominal incision and connected to four different tubes, I was marched up and down the hallways each day, and my mother continued this at home during my recovery, bringing me downstairs each morning to do 30 minutes on the treadmill.  You may not be able to walk quickly or for long durations at first, but with time, it will improve.  Gadgets like the Fitbit or similar options can help as well, offering a motivational kick by tracking your activity each day.

When it comes to resistance training, be careful.  After any kind of surgery, you definitely want your surgeon’s blessing before you begin, and doing too much at first can lead to injury, a hernia, or worse.  You can check with them to see if they can refer you for a physical therapy consult and also check with your insurance company to see if physical therapy services (even one or two sessions) may be covered.  It never hurts to ask.  If PT isn’t an option, you may have other options as well.  There are chiropractors out there (mine is one of them), who have sports medicine backgrounds and offer physical therapy services within their offices.  Often a session with one of these chiropractors can be tremendously beneficial and you can come away with some of the same information, in addition to a chiropractic adjustment, which is never a bad idea anyway.  Do a search for “Sports Medicine Chiropractic” in your area and see what comes up.  Many insurance companies cover chiropractic care, so it likely won’t cost more than your usual copay.

To speak from personal experience, last year when I began strength training again after getting my blood counts back in check and being physically well enough to do so, I scheduled a couple of sessions with a highly qualified trainer at my local gym.  She was one of the senior staff members there, and while I was confident with most of my strength training regimen from learning from physical therapists years ago, I wanted a couple more exercises to work my abdomen and lower body.  My core has been sliced and diced so many times that I’ve suffered from low back pain for years now, and I thought strengthening these areas would help stabilize me.  One of the key exercises she recommended for me were barbell squats, which I began to do religiously at the gym, starting with light weights and moving up from there.  She helped me with my form, and I felt confident that I was doing these exercises safely.

The weight on the squats gradually increased, as did my back pain.  When I finally found my current chiropractor, who is trained in sports medicine, he was blindsided that she had recommended this for me, and when x-rays were taken of my back, the source of the pain was revealed.  Between two of my lower vertebrae, the disc that should have been between them was virtually gone, likely a combination of aging, massive doses of prednisone taken over the years for flares and because of the very exercises that I had been doing supposedly to help the back pain.  Think about it: you’re putting a heavy bar across your shoulders, compressing the back even more – it’s completely counterintuitive.  And perhaps for a normal person, this would have been fine, but given my surgically compromised abdomen (which I did disclose to her during our consultation), it wasn’t.   My chiropractor was able to suggest a couple of exercises I could do that would work those same areas without compressing my spine, and now I visit him every two weeks to lay on the decompression table after my adjustments so that my spine can be pulled apart gently to help recreate some of the space between my vertebrae that is now gone for good.

Again, by no means am I saying that this applies to every personal trainer out there, but I am hoping that you’ll take some of my suggestions and develop your own strength training regimen with the assistance of highly qualified professionals who are there to help you.  If your body has already been to hell and back, why do more damage in the name of trying to build it back up?

As for what I have found that personally works for me, I normally do 30-40 minutes of circuit training using mostly my body weight or light weights (I use a lot of my Jillian Michaels tapes for this, rotating between Ripped in 30, Killer Abs, Killer Legs and Yoga Inferno), I walk my dogs 3-4 miles every day, and I do strength training sessions at the gym four days each week for about 45 minutes at a time.  I alternate days between upper and lower body, making sure to get two days of rest between sessions.   Upper body days consist of pull ups, triceps dips, chest presses, shoulder presses, lat pulldowns, Russian twists, weighted crunches, seated rows, bicep curls, shoulder flys and planks.  Lower body days consist of glute presses, calf raises, quadriceps extensions, hamstring curls, weighted abductor and adductor presses, incline leg press, deadlifts, hack squats and a poorly named exercise called sky humpers, which is basically doing a glute raise while lying on the floor with a weighted barbell lying across your hips.  Every couple of weeks, I change up the amount of weight on each, the reps, and the sequence to keep my body from getting used to the pattern, and I rotate in some TRX work here and there to keep things mixed up.

Again, I will stress that this is what works for me, and that each body is different.  This certainly did not happen overnight, and has taken the better part of a year to really understand which exercises worked for me and which ones didn’t.  Be patient, seek expert advice and GO EASY on yourself.  Even with all that I have mentioned above, I certainly do not have anything close to a six pack and probably never will, and that’s okay.   I’m not training for that.  I’m training so that the next time I have to be gutted like a fish again (and odds are it will happen at some point), I’ll be that much stronger and my recovery and rehab will be that much faster.  So you can keep the itty bitty micro shorts, tiny sports bras and spandex camel toes so tight they likely make a suction noise when finally freed.  I’ll be the one in the corner, mostly covered up, doing my sky humpers and glaring at the douche that left 400 pounds and a sweaty mess on the leg press machine.  Also known as yesterday.

Wishing everyone a happy and healthy New Year!!!