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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!!!


A Little Holiday Laugh

My first holiday season after having my total colectomy wasn’t a fun one.  By the time the holiday rolled around, I had only had my ileostomy for less than two months, and I was still working out the kinks with it.  There were leaks, and I vividly remember having a “blowout” at my stepmom’s house during a family dinner and bursting into tears.  She brought me into her bathroom and helped me clean up, reassuring me that it was no big deal.  That was such a difficult holiday – everything that was happening to me was still so new and unfamiliar.  I didn’t really feel human.

One of my other memories from that first holiday season was a visit from my best friend, Nicole.  Many of my friends had kind of vanished over the last really bad year with the disease, but she still came to visit me, undeterred, whether it was in the hospital or while I was recovering at my mom’s.  True friends are hard to come by, and I’m proud to say that she is one.

A few days before Christmas, she stopped by for a visit and brought with her some festive chocolate covered pretzel rods, decorated with holiday sprinkles in various shapes.  In those early days, it didn’t take long for things to pass through me, so a couple of hours into our visit, I noticed it was time for me to empty my ostomy bag.  By now, this had started to become a bit more routine, and while I was still nowhere near a fan of having the ostomy, I didn’t cry each time I emptied the bag, which was progress as far as I was concerned.

As I was taking care of things in the bathroom, I looked down to make sure that the opening on the bag was clean and was greeted by the sight of what seemed like hundreds of little floating Christmas trees and Santa Claus faces.  It was quite festive, really.  I laughed out loud, thoroughly amused by my “holiday poo”, and Nicole and my mother could hear me clear down the hallway.  Apparently those little suckers don’t digest – who knew?

While I’ve told her that story several times (thank god she’s a nurse) and I don’t think the poor girl can pass by the decorations in the bakery aisle of the grocery store without thinking of that incident, I don’t know if she knows how truly monumental that moment was.  That was the first time I had laughed, really laughed, since the surgery almost two months before.  That was the first time I was able to stop obsessing over the horror that I was convinced my body had become, even for just a few minutes.  For those couple of moments, I was just a girl crapping out Christmas trees into a toilet bowl, and it was pretty damn funny.

That was eight Christmases ago; in some ways it feels like eons and in others like it was just yesterday.  That moment stays with me though, and has reminded me over and over again that laughter truly is the best medicine, and can get you through (almost) anything.  Some good drugs don’t hurt, either.

Regardless of where you may be in the course of your disease this holiday season, I hope you can find some laughter in the next few days.  And to those who will spend their holiday caring for those of us who are sick (the doctors and nurses), thank you as well.  While work may have pulled you away from your family, to many of us, you are a part of ours.

Merry Christmas, everyone!

Thanking Your Pit Crew

Just a quick post today – as I’m sure the case is with everyone, it’s been a crazy couple of weeks and things don’t let up until next week.  My energy levels are lagging this week due to work and holiday engagements; while fun, late nights definitely take their toll.  Last night was our company holiday party that I set up and we feasted on Argentinean cuisine from a local restaurant, so I just finished some leftover empanadas with chimmichurri for lunch.  It was delicious, but now I’m ready for a serious nap.

Anyway, of course it’s the season of giving, and if you can make the time, it is always a good idea to give some small gifts to your team of doctors whom you work with regularly.  Given the multi-system nature of Crohn’s, my team or “Pit Crew”, as I like to call them, is made up of my PCP, my GI doc, my Hematologist, Surgeon, Chiropractor and masseuse.  The gifts don’t have to be anything fancy, but I think it is important to let them know their efforts are appreciated; I can tell you from past experiences that it never hurts to “grease the wheel” a bit to ensure that securing last minute appointments or things of that nature are accommodated easily.  Note that I did mention the staff – while a gift to the doc is a nice idea, it’s the support staff in each office that are the gatekeepers, so make sure to include them as well.

If you’re a frequent flyer in the hospital, don’t forget the nursing staff in the ER and on the floor in your local hospital.  There is nothing more comforting than a smiling face that recognizes you in the ER when you’re in tremendous pain, and the gesture does not go unreturned.  I was recently in the outpatient section of our local hospital for my yearly scope, and when I mentioned to the nurse that I had a port, she immediately told me that they don’t access those in the outpatient unit.  While I understood this, I also have incredibly shitty veins, and I was not about to subject myself to 30 minutes of routine needle stabbing while they attempted to find something in my hand or foot.  I asked them to call over to the ER and see if someone from over there could pop in and access it for me.  The nurse told me she would try, but that they don’t normally do this.

Five minutes later, one of my favorite ER nurses, Matt, showed up at my door bearing the access kit; as I thanked him profusely for going out of his way to make sure I didn’t have to go through the normal IV access route, he told me that as soon as he heard it was me he didn’t think twice.  Little gestures of kindness can go a long way in making your life easier.

As I mentioned, you don’t need to go crazy; I typically make a batch of my homemade granola and put it in mason jars to hand out, and since it is also fairly healthy, it is a nice alternative to all the sugar and sweets bombarded on everyone this time of year.  So get in the kitchen and make something for those that have taken good care of you!

Taking Control of My Future

Ten years ago last month, I had just returned from a two week holiday in Italy and Switzerland with my then-boyfriend.  I remember the timing so clearly because of what happened during the trip and upon my return.  The scenery and sights were amazing, of course, not to mention the food, but none of that is the first thing that brings that particular time to mind.

In the latter half of 2004, my treatment with the chemotherapy drug 6MP was well underway, and I had made it through the initial side effects, which for me included severe pneumonia, bone marrow suppression and a case of hemolytic anemia.  Several months after I had recovered from that train wreck, true to form, I began planning a trip for myself to celebrate my perceived victory.  Working in the hospitality industry afforded me some pretty great connections, and I enlisted the help of my boss at the time to plan a trip to Europe.  After some discussion about the time frame and what locations might be best, I decided on a few nights in Switzerland and then a train ride to Venice to finish out the remaining portion of my trip, which would be in mid November.  My boss was kind enough to reach out to some of his contacts there and set me up with some amazing places to stay and eat.

During the time I was planning the trip, I had also just started dating someone; while we had only been together for a month or two, things seemed promising, and I figured that there was nothing like a couple of weeks in each other’s company in a foreign country to figure out if we might have long-term possibilities.  I decided to invite him along and he agreed ecstatically, so I commenced with booking airfare and arranging the details.  Trip planning has been and remains one of my absolutely favorite things to do, be it for me or someone else.

As the trip grew closer, so did our relationship, and given that the last few months of 6MP treatment had rendered me feeling semi-human again, I was actually able to be physically intimate, which was something that had basically been a non-existent part of my life for the two years since I had been diagnosed.  I truly believed that the worst days of the disease were behind me, though I still felt far from “normal”.  Given the fact that my GI doctor at the time had mentioned to me when I started the 6MP that I wouldn’t want to start a family while taking the drug (which was the furthest thing from my mind at 22 years old and sick beyond belief), I went to a gynecologist and got put on birth control pills, using this as an extra measure of protection in addition to physical barriers.  I never thought about it much beyond that, as none of the doctors went into any real level of detail about the potential side effects of the drug.  Now at 34, I look back and realize how naïve I was to doctors and advocating for my own health, but hindsight works that way, I suppose.

I had carefully researched hospitals and doctors before leaving for Europe, mainly to give my mother peace of mind as I traveled on my own for the first time since my diagnosis.  As young as I was, I’m sure there was some sense of being invincible at the time, as this was a couple of years before the disease would really unleash its wrath and almost claim my life in the process.  My medications were packed, I knew what I could and couldn’t eat – I was ready.

Switzerland was incredible, and the hotel we stayed in while there was probably the most gilded and impressive property I have had the pleasure of staying at to this day.  The room overlooked Lake Lugano, and the bed felt like I was sleeping on a pile of clouds.  I felt great those first few days, and it was only as we packed our bags to head to Venice several days later that I noticed some nausea, which wasn’t uncommon during the course of my 6MP treatment.  A five hour train ride through the Italian countryside dropped us in the fantasy world of Venice, and I spent that week on an all-carb-or-bust diet.  The nausea was always there in the background, not too terrible, but enough that I was planning on getting my TPMT levels checked when I returned to the States to make sure that I wasn’t building up a toxic level of the drug in my bloodstream again.  I ate with a vengeance that week too, everything looked so good and I was just so hungry.  I figured it was the sight of all that amazing food.

We returned from the trip and, still concerned by the nausea, I went to the doctor’s office to have a routine blood draw done to make sure everything looked okay.  The next day, I got a call from the doctor with a concerned tone in his voice.  My blood levels were fine, he mentioned, but…But…I hate that word.  Worst segue ever.   But I was pregnant.

My blood ran cold as he said those words, and I frantically searched my mind trying to remember if I had forgotten a pill, or didn’t use extra protection at any point in the last two months.  I couldn’t think of anything.  The doctor recommended that I make an appointment with a gynecologist as soon as possible, as he indicated that pregnancies while on high doses of 6MP were “highly problematic”.  I sat in my bedroom and cried, having no idea what to do.  Several hours later, I called my mother and told her, and let her know I was setting up a doctor’s appointment within the week to figure out what to do.  She was shocked, but supportive, and I then took a deep breath and got into the car to make the hour’s drive to my then-boyfriend’s house to tell him in person.

He was clearly surprised when I told him, but stayed calm and just sat with me as I let myself process the information.  His first question was one of my health, and how a pregnancy would impact my disease.  I had no idea, and it was only then that I explained the full impact of a class D medication during pregnancy to him.  We talked about various options, still absorbing the news, and knew that nothing more could be decided until we had talked to doctors to find out what we were really dealing with.

Later that week, I met with my gynecologist who confirmed the pregnancy, telling me I was about 6 weeks along, and then brought me into her office to talk.  Once she sat down behind her desk and removed her glasses, I knew what she was about to tell me wasn’t good.  I had no idea what I wanted, except for everything to go back to the way it was a couple of months ago.  As she started talking about the implications of the dose of 6MP I was taking on a developing fetus, it became clear that she was recommending a termination of the pregnancy as quickly as possible.  I asked if I could have some time to think about things and consult a second opinion and she agreed, but urged me to move quickly, noting that the pregnancy could also send my body spiraling into a flare the likes of which I had not yet seen.

I filled in my boyfriend about the appointment and we decided to consult with my GI doctor to get her feedback.  Her bedside manner had never been her strong suit, but I will say that day she demonstrated actual empathy, though her words were just as ominous as the last doctor.  She told me that given how quickly my disease had progressed in the short time since diagnosis that a pregnancy would almost certainly worsen my condition, and told me that the chance of major birth defects to the baby were enormously high.  Hearing enough at that point, my boyfriend and I looked at each other and knew what we needed to do.  I can’t say I was upset or angry or sad…I couldn’t really feel anything, to be honest.  I was just still so dumbfounded that things had changed so drastically in the course of a week and I felt like I couldn’t process all of the information that was being doled out to me in volumes.

I called my mother to let her know what we had decided at the recommendation of the doctors, and called the gynecologist to let her know we had decided to terminate the pregnancy.  I think she knew how traumatic all this was, as she cleared time the following morning for the procedure so I wouldn’t have to agonize over the decision all weekend.  The next morning, my boyfriend and I showed up at her office and within an hour, it was done.  Everything had happened so fast, yet based on everything the doctors had told us, I felt that we made the right decision.

As the weeks went on, I started thinking more and more about the entire situation, and I was angry that more time wasn’t spent when I first started the 6MP on telling me about the side effects, particularly the dangers of birth defects.  Literally, the only thing the doctor had told me at the time was “you don’t want to start a family” while taking the drug, something that didn’t even begin to cover the risks and contraindications of the medication.  I started doing more research on 6MP, and read about possible birth defects occurring even years after being taken off of the drug.  Other immunosuppressants had pretty much the same stories, not to mention that there was some information questioning whether these drugs lowered the effectiveness of oral contraception, something that was never mentioned to me at all.  Knowing that my treatment was going to be for life and not a finite period of time, I knew I couldn’t put myself through the agony of having to make a decision such as this one again, and given the circumstances of the last pregnancy, how could I be sure it wouldn’t happen again?  If we were talking about a year or two, of course I could abstain from sex, but for the rest of my life?

I began researching more permanent methods of birth control, but I questioned the effectiveness of hormonal methods such as Norplant implants and shots, given my experience with the pill, and according to my gynecologist, I was not a candidate for an IUD given the risk of infection to an immunosuppressed individual.  I felt stuck.  At 24 years old, I didn’t know if I would want to have children down the road, but it was seeming less and less likely that that was going to be a viable option given all the medications I was on.  I decided it was time to take the bull by the horns and research permanent sterilization.  If I wanted a family down the road, there was always adoption, and I couldn’t simply do nothing.

Upon asking my gynecologist about the permanent sterilization, she was surprised, but offered me some information about two options.  There was, of course, the traditional tubal ligation, a process in which the fallopian tubes were cut and tied, but this involved an actual surgery and incisions, something that many doctors didn’t want to do unless absolutely necessary on my immunocompromised body.  She mentioned a newer option called Essure, which was popular in Europe; essentially, during a quick procedure, a small titanium coil was placed inside of each fallopian tube to encourage scar tissue grown around it.  After three months (during which time traditional birth control methods are needed), a study is done using dye to make sure that the tubes are completely sealed, and at that point, you are permanently sterilized.  This option intrigued me, and I read up some more on it.

Several weeks later, after giving the idea considerable thought, I decided that I wanted to move forward with the Essure procedure.  Given that it is irreversible and I was so young, my doctor requested another appointment with me to once again asses my “readiness” for the process.  During that appointment I told her the circumstances under which my last pregnancy had occurred, how I didn’t want to have to be put in that awful position again of having to make a decision that was a no-win either way, and that I needed to do something to ensure that I would be in control of my fertility (or lack thereof) moving forward.  She handed me a stack of papers to read and sign, essentially making it clear to me one more time that once done, there was no going back on this.  I felt good about the decision.  I was ready.

I scheduled the procedure for the following week, and had the office call my insurance company to arrange all of the authorizations.  Because it was elective sterilization, 100% of the costs were covered, which was great.  I called my mother and informed her of my decision, which she quietly agreed was probably for the best.  My boyfriend had been kept in the loop of the process all along, and while we hadn’t discussed a permanent future together, he seemed supportive of my decision as well.

I went in the following week, and under a mild sedative, the entire process of inserting the coils took about half an hour.  Once I woke, I had a bit of cramping, but nothing horrible.  The “recovery”, if you could even call it that, was very minor, and I was back to my normal self in a couple of days.  Overly cautious, I refused to have sex for the next three months until the dye study was completed and showed that I was permanently sterilized, and my boyfriend was forced to accept this decision, although rather unenthusiastically.

About a week afterward, I drove down to visit my mother, and we sat and talked about the last few months.  I cried, she cried, and she went into her closet and retrieved a baby book that was written in Spanish, something that she had picked up the year before to stow away for the day when I might provide her with a grandchild.  We looked at it together and I hugged her, for the first time realizing that it wasn’t only my future that had been permanently altered.  I looked at the book, and while sad, I realized that it had never been meant for me.

Three months later, I went in to the gynecologist’s office for the follow up, and as I watched on a screen as the dye was inserted, it stopped abruptly where the coils had created a blockage of scar tissue around them, and I immediately felt some small sense of control over this part of my destiny.  Maybe I couldn’t control the course of the disease (that would become blindingly obvious in the next couple of years), or the side effects of the medications, but I could control this part; never again would I be forced to decide whether or not I would have to end a life before it had barely begun.

Ten years have passed since that awful time, and while it was terrible to have to contemplate that kind of decision at such a young age, I knew then that it was for the best and I have no regrets.  Are there times that I wonder what it would be like to have a child of my own?  Of course, and I know my husband would be an amazing father.  But that wasn’t something meant for me, at least not in this life. Quite honestly, between managing symptoms, doctor appointments, hospitalizations and such, I see now that for us to have a child wouldn’t be fair to anyone.  I see my friends begin to start their families and I am truly happy for them, and I enjoy the time I get to spend with my niece Izzy.  I know my brothers and my sister will eventually go on to have children and I’ll get to be the cool Aunt that will take them for temporary tattoos and feed them extra sweets.  And when I get home at the end of each day, all the love I need is there in the form of my wonderful husband and the two best Labradors a girl could ask for.  Plans change, and at the end of the day, growth is painful.  Change is painful.  But nothing is as painful as staying stuck somewhere you don’t belong.

My Year In Review

As I write this, it has been almost a year to the day that I walked out the door of my hotel for the last time and took the proverbial “jump off of a cliff” into the unknown.  As I was walking the dogs this morning, I marveled at how a year could have passed already, and wondered where the time had gone and what, if anything I had accomplished.  If you’ve read anything I have posted before this, you know “accomplishment” is something very important to me and, like it or not, something I use as a scale by which to rate myself.  It may not be healthy, but it is what it is.

Of course, I am also painfully aware of some of the limitations that I have based on having Crohn’s for so many years, not to mention surgeries, etc; I have become much more sensitive to this over the last year, that is for certain.  This time of year when the social engagements are many and my obligation to some of them is expected (work functions for my husband and I), I have found myself saying no to several of them to make sure that I’m not overextending myself.  While I love a good party, I can’t drink because of the never-ending cycle of Flagyl that I’ve been on for the last seven years, it is stressful trying to prep for the event by not eating so I won’t need to constantly run to the bathroom, and I just don’t want to sacrifice what sleep I do get each night.

Anyhow, I’m getting a bit off track.  As I look back, here’s how I spent the last year getting acquainted with my body and it’s Crohn’s-related demands:

I had deliberately delayed the start of my new part-time job until the beginning of January so that I could have about two and a half weeks off with my husband, who I hadn’t spent any real time with in months given our crazy schedules.  I spent the last three weeks of December sleeping a lot.  It was like my body couldn’t get enough rest – I was in bed by 10pm most nights and slept until 8 or 9am.  I took naps.  Part of that was due to the fact that I was in desperate need of an iron infusion and a blood transfusion, something I had used to do religiously every two months for the past six years, given my chronic anemia.  I found a hematologist nearby and scheduled an appointment and received blood and iron.  I hadn’t been to the dentist in a year, so I did that, too.  My parents came out to visit for a few days before Christmas, which was great, and we flew to Boston for a few days to visit my husband’s family, but mostly, I slept.

Once January rolled around and my husband was back to work from his vacation, I started my part-time job, which was two days per week, doing much less stressful work.  Still slept a lot on my days off, but for the first time I finally felt almost “caught up”, where I wouldn’t wake feeling as exhausted as I had going to bed the previous night.  More iron infusions to boost the hemoglobin.  As much as I wanted to start working out again, something that I hadn’t been able to do since we had moved to Texas given my schedule, the hematologist had advised waiting until my blood counts had stabilized and I wasn’t constantly dizzy or out of breath from the anemia.  Probably smart.  So I stuck to walking the dogs about three miles a day, enjoying the time outside.  I rediscovered cooking, and took pleasure in being able to cook dinner for my husband and I each night.  It wasn’t easy, being that I’m not the best cook and it had been quite a few years since I’d had any kind of time to regularly make meals.

The end of January brought sad, yet not unexpected news.  After a steady decline in his health over the last two years, my father in law passed away at the age of 80.  The call from my brother in law came late one night, and once again we flew to Boston for a week to attend to the funeral arrangements and to spend time with the family.  I was so glad I was able to do that without having to fight a hectic schedule to get the time off.  My husband needed me, and I was able to be there to support him, which meant a lot to both of us.

By the beginning of February, I felt strong enough to begin working out again, after getting clearance from the hematologist.  I started jogging a bit, and did circuit training five or six days a week.  It was hard to start up again and see how much my health had declined in the last year, but I kept at it and began to notice improvements in my mood, sleep and how I felt about my body.  I kept up with my GI and hematologist appointments religiously, and my sleep patterns became more normal, more like 8 hours each night instead of 10.  I still napped in the afternoon on my days off, which was such a foreign concept to me that I almost felt guilty.  No, I did feel guilty.  Here I was, working part-time and staying home several days each week to do what?  We didn’t have kids (though our two dogs are very much my babies), so what was the purpose?  I felt that I hadn’t “earned the right” to do this, and I struggled with that for several more months.

March was spent getting ready for a trip my husband had planned for my birthday in early April to Santa Fe.  Neither of us had been before, and given that we were driving, the thought of 11 hours in a car with limited access to bathrooms was more than a little stressful.  The elevation was a concern as well, so I got a few extra boosts of iron and blood before our trip to ensure I wouldn’t have more difficulty acclimating.  I upped my cardiovascular workouts a bit to try and prep myself to do some hiking, which is something that both of us enjoy very much.

The drive out to Santa Fe in April went surprisingly well; we left very early in the morning, so I refrained from eating almost all day and just kept hydrated until we arrived.  Not the most pleasant thing, for sure, but I did it and was proud of myself. While I had considered myself well prepared for the elevation change, a just-beginning-to-get-healthy body slightly above sea level doesn’t necessarily transition so easily to life at 10,000 feet.  We didn’t get to do as much hiking as I would have liked, as I got winded too easily, so we stuck to doing long, leisurely walks around town, visiting galleries and eating lots of great food.  We visited Ojo Caliente mineral springs, as I mentioned in an earlier post, which was a lovely way to spend an afternoon.  It was a nice trip to have together, particularly since my husband hadn’t really had any downtime since his father had passed.

By the end of April, having returned from our trip, I decided it was time that I start strength training again to complement my cardio workouts.  I signed up at a gym nearby and started slow, doing a basic routine three days a week for 45 minutes or so, and began to see improvements in my muscle tone within a few weeks.  It was encouraging.

By May, I was starting to feel semi-normal, and had begun to work three days most weeks, a transition that was easy to make.  I was gaining confidence that my body was almost back to normal.  Not exactly.  Sometime toward the middle of the month, I noticed I began to feel sluggish again.  My blood counts were good, so it wasn’t that.  A few days later, I woke with a familiar horrible aching all over my body and a fever of 103.  Off to the ER we went, where I was diagnosed with pneumonia again; this was the second time within six months.  Luckily, we caught it relatively early, so with a couple weeks of antibiotics and lots of rest, I was feeling myself again in a couple of weeks.

And then there was the summer.  The summer that I have now deemed the “ER Extravaganza”, one in which, between the months of June and August, I visited the ER seven times with bowel obstructions and was admitted three of those times.  I’m pretty well-versed on what I can and can’t eat after so many years of trial and error, so these weren’t simply a matter of me eating the wrong thing.  That June, my GI and I had decided to begin to tweak my medications, given that I was having progressive neuropathy in my feet from so many years on the Flagyl.  I would remain on the Humira, but we stepped down the Flagyl dose and began 6MP, another immunosuppressive medication commonly used to treat leukemia, to supplement it.  I had been on the medication years before with mixed results (bone marrow suppression), so I went for weekly blood tests to monitor my TMPT levels to make sure I didn’t develop a toxic level of the drug.  All was well until one week, where my hemoglobin counts went off a cliff and I dropped from 10 (which is fairly good for me) to 7.  Turns out I didn’t have both enzymes needed to break down the 6MP, so the bone marrow suppression had returned.  We stopped the drug, started another similar one, with the same results.  I’m sure that this tweaking of the meds had something to do with the flare that consumed me over the summer, but it certainly wasn’t the GI’s fault.  We had to do something.  Each hospitalization only lasted a few days before my obstruction passed, and I was loaded up each time with several antibiotics and the devil’s brew – Prednisone.  My poor husband.  I don’t think it was a fun summer for him, either.  With all of the obstructions occurring at the same point where CT scans had revealed I had some narrowing, my GI recommended a surgical consult.  I really didn’t want to open up that can of worms again.

By the end of August, the GI and I had mutually agreed to put me back on the original Flagyl dose for the time being so my body could stabilize a bit.  I needed to get well; my brother was getting married back in Philadelphia the following month and I needed to be healthy enough to make the trip.  I made an appointment with a dietician, something I hadn’t done before, as the last hospitalization a couple of weeks before had also revealed that my electrolytes were severely out of whack and my potassium had dropped to a dangerous level.  It seemed time to get some expert advice to see what I could do that wouldn’t be in the form of another pill.  I got a lot out of that visit, which I have posted about earlier, and made a few changes to my diet which, overall was pretty healthy.

Three weeks of careful eating and lots of sleep later, we boarded a plane for Philadelphia for the wedding, and it was great being back home for the first time in a year and a half.  It was an insanely busy week between family commitments and trying to catch up with old friends and colleagues, and I was careful to not to too much to throw my body off balance.

By the end of September we were back home in Texas, and I proceeded with the task of finding an appropriate surgeon to consult with at my GI’s recommendation.  Not an easy feat, considering my rather checkered surgical past.  A few weeks later I had narrowed my search down to one and made an appointment for the beginning of October.

The visit with the surgeon was a cautious one, with a lot of answers that I had expected.  He was very reluctant to operate to remove scar tissue from the narrowed areas unless there was an emergency that dictated it must be done, given the risk that because of my history, complications like fistulas, infection and perforation were a good possibility.  I understood and appreciated his cautiousness, but at the same time, I didn’t want to spend another several months bouncing in and out of the hospital and told him so.  He requested a small bowel series, a test which is at best time-consuming and frustrating, and at its worst results in vomiting up lots of barium, pacing the halls wearing a hospital gown for hours while you wait for things to “move along”, and get so dehydrated and hungry that you feel like you will almost certainly physically harm the next person that passes by.  I went through with the test in early November and it confirmed what he had already told me – the surgery would be too risky unless it was medically absolutely necessary, and at some point that will likely be the case.  He told me he would be glad to operate on me when that time comes, and I sat down with my husband so we could put a plan in place should that happen, given that I would need to be transferred from our local hospital to a larger one downtown, where the surgeon is based.

At that point, since I had already met our insurance deductible single-handedly by the month of August, I decided it was time I revisit a chiropractor, as I had yet to find a good one in our area.  I have relied on chiropractic care since my teen years and always found it helpful; my deep tissue massage therapist recommended a chiropractor that she worked part-time for that wasn’t far from my home.  I made an appointment with him right away, and am so glad I did.  This man is far more than a chiropractor – his background is in sports medicine, so the appointments are focused around your overall health and mobility rather than just fixing subluxations in the spine.  During the first appointment he took x-rays of my spine, which I hadn’t had done before, and pinpointed the likely source of the constant, grinding pain in my lower back for the last six or seven years.  Between two of my vertebrae, the disc that should have been there to cushion the daily impacts was essentially gone, likely a combination of aging, the tons of Prednisone I’ve been on over the years and all of the abdominal surgeries compromising my core strength.  He prescribed a regimen at each appointment that begins with electrical stimulation and heat on my lower back for 10 minutes to loosen and relax the muscles, followed by a thorough adjustment that usually lasts about 15 minutes, during which a good deal of time is spent stretching out my lower back, and ends with 15 minutes of traction on the decompression table, where you are essentially strapped in to a straightjacket on a table and then a machine gently pulls your body to lengthen and create space between the vertebrae.

I’ve been going weekly since that first appointment and the results have been amazing.  For about three days afterward, I have no pain in my lower back, which hasn’t happened in years, and is a huge improvement.  Additionally, he took the time to evaluate my strength training regimen and recommend exercise substitutions for those that would put too much strain on my low back.  While it’s been great that I haven’t had to pay any copay for these weekly appointments, once the New Year hits I’m still planning on going at least every other week for maintenance, as it has made such a difference in how my body feels.  While it has only been a few weeks, I have to hope that this will have a positive impact on my overall health and maybe even some of my Crohn’s symptoms as well.

So there you have it.  My Year in Review.  I guess if you’re (and by you, I mean me) looking for “accomplishments”, there have been several.  Giving my body plenty of rest, resuming my workout regimen and getting physically stronger, catching up with all my GI and Hematologist appointments, keeping my blood levels stable, keeping my husband from divorcing me despite months spent on massive doses of Prednisone, receiving a dietician consult to evaluate my eating habits, a surgical consult which now leaves me with peace of mind that, when the time comes, I have someone that can operate on me whom I know is familiar with my history and is qualified, and finding a chiropractor to enhance my overall health and wellness, combined with the efforts of my wonderful massage therapist whom I’ve seen religiously since moving here almost two years ago.

It really does take a village, and it takes a lot of time, thought and a consciousness and self-awareness that I know I didn’t have before this year began.  So, to that end, I suppose I now need to evaluate what worked this year, what didn’t and what I would like to try and work on in 2015.  Finally, I must note that absolutely none of this would have been possible without the amazing support of my husband George and my mother Wendy, both of whom have supported this journey whole-heartedly and without question. Their insights and opinions may not have always been well received (again, I’ll blame the Predisone as well as my general stubbornness), but have carried weight nonetheless.

It’s been quite a year, indeed.



A Bit About Little Moon Essentials

So you’ve probably seen several of my posts mentioning the company Little Moon Essentials, and a few of their products on my Resources page.  I should probably go into a bit more detail here, because if you just pull up their website, I will admit that some of the products sound a little like something created while coming down off of a pretty wild acid trip.  I mean, bath salts for different phases of the moon?  I was skeptical, but I should explain how I came across the site and started using their products.

This past spring, my husband and I took a road trip from our home in Austin to Santa Fe for my birthday.  Neither of us had been before, and it seemed a good way to christen his new car that he had only had for a couple of months.  During our week in Santa Fe, I had read about a mineral spring relatively nearby called Ojo Caliente.  The material on it said that it had various mineral spring baths containing things like iron, arsenic, and lithia that supposedly were healing for all kinds of ailments.  As it was only an hour away from where we were and I am always up for a new experience that may help my body, I mentioned it to my husband and he agreed.

The trip out there was remote, and when we first pulled in and I saw several tee-pee’s with smoke coming out of the top, admittedly I wondered if we were going to be sold some special kool-aid and told to pack our belongings for an arriving comet.   The place (and the clientele) definitely had a hippie/granola type of thing going, but that didn’t faze me in the least.  It was an incredibly peaceful setting, and I wanted to experience some of this healing that I had read about.  Due to a steep drop in my hemoglobin levels before we left (I have chronic anemia, and sometimes my levels go off the deep end with no warning) combined with the high altitude, I was having a hard time adjusting that week and really wanted a day to just relax.

We stopped by the reception desk, where for $18 apiece, we were given an all access day pass, robes, sandals and a towel.  After changing and meeting outside by a row of inviting looking hammocks hanging from a large pergola, we did a quick lap of the grounds to see what we were going to do first.  Each of the pools had a sign next to it stating what the pool was and what ailments it was used to treat.  The Lithia Spring’s sign said that it was used for centuries to cure depression and aid in digestive issues.  Um, yes.  The Iron Spring, which I referred to as the “Mother Ship” during our day there, was especially good for blood and immune disorders, so I was practically ready to dive headfirst into that one.  The Soda Spring was next, said to help relieve digestive problems, followed by the Arsenic Spring, which was listed as beneficial for skin disorders, ulcers and arthritis.  Next up was a large pool filled with warm mud; you were supposed to climb in and cover yourself in the mud before lying on a large flat rock next to it to let it dry.  You would then shower off with a few of the shower heads lined up against the stone wall.  Finally, in the middle of all this was a large pool of cool water where you could take a dip to cool down and “regroup” between soaks in the mineral springs.  There was a whisper-only policy enforced in the spa area, so the whole scene that day was very calm and serene.

We started with the Iron Spring and continued to rotate through each of the springs that afternoon, pausing occasionally to bundle into a large fluffy towel and snuggle up burrito-like into one of the hammocks.  Definitely one of the most peaceful afternoons of my life.  After about five hours there, we showered and changed for the drive back to our hotel in Santa Fe.  That night I noticed that the mild nausea that had plagued me for the last five days was gone, and I had an actual appetite.  We celebrated with a dinner in the hotel’s restaurant, which was amazing.  I slept soundly that night, and the next morning upon rising, I noted that I wasn’t dizzy when I stood up and that my joints barely ached at all, which is an almost daily occurrence for me in the morning.  My husband said he felt great that day as well, which led me to want to research this whole concept a bit more.  Was there a way I could bring a piece of the mineral springs back to Austin with me?

Of course, I wasn’t exactly expecting to find bottled arsenic in a jar to add to my baths, but I started searching for mineral salts, etc.  When I looked up “iron bath salts” using Google, lo and behold, the link for Little Moon Essentials appeared.  The reviews on all of their products looked great, but not wanting to waste a lot of money, I only allowed myself to order a small jar of the Ironman Bath Salts and the Dream Cream, which came to about $20.  The products arrived a couple of days after we got home, and after one use of each, I was hooked.

Again, I haven’t tried all of their products, but the ones that I mention are those I am fiercely loyal to given the results I’ve had.  I’ve said it before and I’ll say it again – having IBD is insanely expensive, so you don’t want to blow a shitload of money on Jack’s Magic Beanstalk Beans.  If you’re interested, do what I did and start with a small size of a couple of things and go from there.  Coincidentally, they are doing a Holiday Sale right now, so I think you can get 20% off your order for the next few days.  And if you ever find yourself around the Santa Fe, give Ojo Caliente a try, too.  No kool-aid required.


Items to Add to Your Wish List for the Holidays

How the hell is it Thanksgiving week already?  The doors to the Christmas season will soon be thrown wide open, though they’ve been cracked since Halloween, the candy and costumes on clearance the last week of October, while Christmas trees and garland fight for space on the shelves.  I’m getting off track here, I suppose.

Remember the joy of making out a Christmas list when you were a child?  How fun it was to think about what gifts you wanted, the anticipation of what would be under the tree?  I’m the first one to admit that that is completely NOT what the season is about, but the reason I’m mentioning it is that, as someone with IBD or a related condition, there are some really useful items you can put on your list this season just in case friends, family or good old Saint Nick happen to ask.  Many have been extremely helpful to me, particularly during the course of a flare.  A few items to think about this season:

Vitamix – to call this thing a blender is really doing it a disservice.  What can’t it do?  It will blend anything in a matter of seconds, can be used to puree fruits and veggies into more easily digestible forms (soups, smoothies, etc) and can pulverize a wheel of parmigiano reggiano into a fine dust in a matter of seconds.  It’s amazing, and it will last you forever.  In my family, graduates of high school were given not laptops or collegiate prep items, but a Vitamix; I would love to tell you that my family chose to do this for health and wellness reasons, but really it was because it makes the most kick-ass margarita of your life.  That being said, I tend to use mine for more practical things (sorry, Mom), such as soups, smoothies, my banana “ice cream”, and all kinds of other goodies.

It’s not cheap, I will say that up front, but you can even get decent refurbished ones on auction sites, and the thing is built like a German car.  I’ve had my same base unit since age eighteen, and it works as good as the day I got it.  Depending on the model you choose and whether its new or refurbished, expect to pay anywhere from $250 to $500 or so.

It makes it so much easier to maintain a balanced diet, since certain fruits and vegetables can be murder on some of our systems.  Still all these years after my surgeries, I have a very difficult time with things like raw carrots, spinach, peels and seeds, and try to avoid them in whole form if I can.  It’s super easy to throw in a few handfuls of raw spinach into a smoothie (don’t knock it until you try it), and using tricks like this is a great way to enhance the basic nutritional content of bottled dietary aides like Ensure.

This is one item that will remain on your countertop all the time, and will come in handy on almost a daily basis, whether you’re healthy as a horse or in the midst of an awful flare.

Juicer – This pairs nicely with the Vitamix mentioned above, though you can get a decent juicer for under $100.  How much you want to invest will depend on how often you’ll be using it.  For those who are really struggling nutritionally and will make it a daily habit, there are higher end centrifugal models that will extract more juice and nutrients than the basic units; these can run upwards of $250.  Juicing is a great way to incorporate more fruits and vegetables into your diet, particularly those with tough skins or seeds that don’t digest well.  The possibilities are endless, and there are a million recipes out there; I tend to add juices to some of the smoothies I make for additional nutritional impact and flavor.  Having one of these can really make “eating” a bit more palatable during those times when the only things you are ingesting can be sucked through a straw.  I mean, Ensure is fine and well for a day or two, but after that I want something that doesn’t remind me of that god-awful barium drink you need to ingest before a small bowel series.  I’ll put a link for one or two models on the Resources page for more info.

Massage gift certificate – there are quite a few alternative therapies out there for you to try if you happen to be interested; massage therapy is something that has been tremendously helpful to me over the years, most recently to help with the pain from adhesions and the general wear and tear on my lemon of a body.  There are various massage techniques offered, everything from the more relaxing Swedish and shiatsu massages  to the more intense (and not always pleasant) deep tissue therapy, which is what I use.  Deep tissue work can be intense and is painful at times, but I find that the after effects are always worth it for me.  My range of motion is better, my low back pain relieved and my joints more mobile after my bimonthly sessions.

While you may find luck with a chain and a membership program (such as Massage Envy), it can take some time to find the right practitioner for you, given your needs and preferences.  For bodies with unique needs, I have found that the massage therapy offered through some Chiropractic offices to be much better than traditional spas.  Many of these masseuses work in tandem with the Chiropractor to ensure functional motility of the body, and in my opinion, tend to have a higher skill level in dealing with chronic pain and disease related effects.   Regardless of what you choose, a couple of massage sessions can do wonders for joint pain, relaxation and the release of toxins.

Salves/Soaks  – these items are all already listed on my Resources page, and if you want some stocking stuffers, they are great to add on to your list.  Many people are familiar with salves like Biofreeze for joint and muscle pain (which I deal with daily); my own preference is a company called Little Moon Essentials, based out of Colorado.  Their Dream Cream is the best for muscle and joint pain, and paired with one of their bath soaks (I like the Ironman Bath Salts, given my issues with anemia as well), they are a great way to soothe aches, pains and a crampy gut.  Another product of theirs that I have found helpful is their Crampy Belly Rub; while designed to combat PMS related symptoms, I use it when I have bad Crohn’s-related pain and seen results from that as well.  And fear not, gentlemen – though it was originally designed for PMS, you will not experience the spontaneous growth of female parts should you choose to try it.

Heating pad – now, you could just go pick up any old heating pad from your local drugstore, and that will certainly suffice, but they do offer tricked-out infrared models now; while a bit on the pricier side, I can personally vouch for the effectiveness and the durability of the Therasage infrared heating pads.  They range anywhere from around $100 to $400, depending on the size, but the type and quality of heat therapy they offer can’t be beat.  Mine was actually a gift from my mother about three years ago and is large enough to cover my back from my neck to my pelvis.  After almost daily use, it is still working like a champ, and it would be one of the things I would save from my home in the event of a fire (after my husband and my dogs, of course).  It is a bit on the heavier side, so if you’re looking for one to travel with, I would definitely pick a smaller one, but it is well worth the money you (or someone else) will spend on it.

Hopefully this gives you a few ideas for practical gifts this holiday season; I will put links to the products on the Resources page if they aren’t already there.  Each of these products can make life with IBD a bit more comfortable, and that’s really what this website is all about.

On that note, I wish each of you a Happy Thanksgiving!!!!!!!!!!!!!!