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Surviving a Hospitalization

It goes without saying that at some point, if you have IBD or a related autoimmune disease, you will likely be hospitalized; some more than others.   This is why I always travel to the ER with my at-the-ready overnight bag, because you never really know when an admission will be needed.  Everyone’s “necessities” may be different, but below is a list of what I usually keep in my bag:

Basic toiletries

Toilet paper & Cottonelle wipes (the hospital grade TP is murder on my poor bum)

Earplugs (helpful for blocking out noisy IV pumps and possible snoring roommates)

Sleeping mask to block out light from the corridors

Cell phone charger

Reading material

Loose, comfortable clothing with open necklines to allow for access to my port (tanks with built in shelf bras, yoga pants, etc.)

Socks and a robe

Heating pad (they hardly ever have them in the hospital anymore, and I’m spoiled by my awesome infrared model, so “Sparky” comes with me)

If you are in the hospital often enough (hopefully not), you may also want to invest in a couple of your own hospital gowns.  Not those horrid ones with bad prints that all hospitals have, of course.  I have always been a fan of Diane Von Furstenberg and have a couple of her wrap dresses.  For an upcoming surgery, my husband did a little research, and it turns out that she designed a line of hospital gowns for the Cleveland Clinic in Ohio.  As I was having my surgery out west where we lived, he wrote them and asked if they could send me one or two.  Lo and behold, about two weeks later a package arrived in the mail for me.  I had no idea and when I opened the box to find two DVF designed wrap dress hospital gowns, I cried I was so happy.  This disease can often make you feel like you have lost a part of your identity, and this was a small way of getting some of that back.  I wear them each time I’m in the hospital now and the nurses always complement me on them.  There are other companies that design ones with fun prints and things like that; it’s still a hospital gown of course, but I feel just a little more like me.  And any morale boost you can get is a good one.  Kudos to The Mr. for tracking that down for me….he’s a good egg.

Once admitted to the hospital, you may find that in a place designed to give you rest, it’s often difficult to come by.  There will be staff checking on you at least every couple of hours, wanting vitals, taking blood, administering medications…then there is the constant checking in from well-meaning family members and friends, calling and emailing to check and see how you are feeling, possibly visitors and/or a roommate…

Obviously, you control the things you can and deal with the ones you can’t.  The roommate situation is usually a given, though in the hospital now closest to our home, they have mostly private rooms which is AWESOME.  If a shared room is a given, you don’t get your pick of roommates, and normally not much can be done about it.  I once awoke in the middle of the night only to find the sweet, older lady who was my roommate stabbing at me with her cane, calling me a whore because I wouldn’t marry her son.  That was awkward.  They stepped her down on her painkillers a bit so she didn’t hallucinate anymore, but I was stuck with her for the duration of my stay.  The earplugs and sleeping mask can help with this a bit, as with the light and noise that can come from the corridors even late at night.

Calls and visitors are more of a personal preference.  I usually turn my ringer off and have my husband funnel calls and inquiries for me until I am ready to talk.  My husband will visit every day, but even then I try to keep his visits limited to an hour or two.  I know it must be hard for him to feel helpless as I lay there, and honestly, I can rest easier when I’m left alone.  He understands that now after spending an entire night in my hospital room with me when we were on our honeymoon in Kauai.  The staff there were so amazing, as soon as they found out we had just gotten married, they pulled out a cot for him in my room (which was private) and offered to get him dinner.  He slept curled up on that cot for as long as he could that night, given the frequent checks on vitals, the IV bags that needed to be changed at 2am and the 4am blood draw.  After that night, he gets it, and no longer feels kicked to the curb when I tell him it’s time to go.  Unless I am in for a really long time, I ask all other visitors to wait and come see me when I am home.  I don’t think anyone likes to feel as though they have to entertain when they are feeling awful, and not looking much better either.

And finally, if you find yourself in a situation where you know that you are going to be hospitalized in advance (say, for a surgery, etc), please do try my preferred “Surgery Prep”, in addition to the awful ones the doctor will give you to drink the day before to clean your system out and ensure you are ready for anesthesia.  My prep is far more pleasant than that:

One manicure

One pedicure

One massage

The manicure and pedicure will keep your hands and feet looking nice since you’ll be staring at them a lot anyway, and the massage will help to alleviate any pre-surgery anxiety and stress.  Just make sure you do those things before drinking the nasty stuff that the doctor gave you, otherwise you will be a fountain of bodily functions and unable to fully enjoy this part of your “prep”!

Additionally, if you happen to be going in for “takedown” surgery (aka, the removal of the ileostomy), do yourself a favor and bring a tube of Ilex, one of Calmoseptine (both of which have links on the Resources page) and some kind of bland food that will be easy for your belly to digest, like Ritz crackers.  There’s nothing worse than having to stomach bad hospital food when you’re already nauseous (as going NPO and pain meds can sometimes do to me).  Ritz crackers are easy on the belly for a soft foods/bland diet, and if you supplement them with some Ensure, you can get some basic nutrition and get your GI system functioning while avoiding the grey green beans and soggy meatloaf.

In the meantime, I’ll locate a couple links for custom hospital gowns and put them up on the Resources page as well, in case you’re interested.

Have a great weekend!!!

When Work Isn’t Working

This post is a very personal one for me, and one that took me a bit of time to write, as it is still something I struggle with almost daily and is a subject very close to my heart.  It’s such a rare thing to get paid to do something that you truly enjoy, and though my path to get there wasn’t a direct one, I felt lucky to have found it, and am grateful to this day for all the people to whom it has introduced me and the places it has brought me in life, both literally and figuratively.

The role of work is one that many with IBD have a love/hate relationship with.  Work helps give us a sense of purpose, allows us to meet people and socialize outside our normal circles day to day, and offers a welcome distraction to the daily rigors of symptoms.  Many will struggle at times with being able to work, depending on the symptom severity, the type of work that you do, and how understanding your employer is about your disease.

While I have an educational background in psychology, I fell into a career in hospitality in my early twenties as I was attending graduate school.  As I mentioned early on, this is essentially the same time that my IBD symptoms started, so I have never really known a time in my working life that didn’t involve all of the many factors we have discussed earlier.  Simply putting myself through graduate school, I started work at a hotel at the front desk and within a year transitioned to an Assistant Manager and finally a Director role.  I took to the role like a duck to water, and was fortunate enough to have an amazing boss who was aware of my symptoms and was very flexible with my schedule needs as I bounced from one doctor appointment to the next.  I worked mostly during the days and would then hop on the train across the street after my shift to attend my graduate school classes in New York City three days each week.

I loved being part of a team, part of a business that kept going round the clock even after I left at the end of the day.  I loved the constant change and the fact that no day was similar to any other.  I was good at it too, as I found out, and the long hours and intense days kept me distracted from the disease that was beginning to take over my life.  I ran a team of about twenty at the time, and over the years the size of the teams would grow to thirty and most recently to around seventy.  It is difficult and often thankless work, but there is nothing quite like the feeling of becoming part of a hotel or restaurant “family”.  Sure, in other professions you make friends with coworkers and commiserate over your day to day challenges.  I’m talking instead about partners in crime, those who will help you distract arriving wedding guests while a dead body is snuck out the back door by EMS, who will help you try to have a rational conversation with an intoxicated individual who is attempting to receive oral sex from a jack-o-lantern, and who will give you a laugh when it’s been a fourteen hour day and there’s still no end in sight.

Over the years, my teams and I went through more than some people do in a lifetime.  Unable to have children of my own, in some senses I do very much view them as my “children”, and I mean that in the best of ways.  I have watched the young ones develop in their own careers, some continuing on in the hotel industry, and others pursuing opportunities in nursing, music and education.  I have held some while they cried over the loss of family members, have helped others apply to college, and have been asked for bail money on several occasions.  I have led teams through difficult circumstances, such as the death of one of our own and an internal theft ring that left us shaken to our core and questioning how much trust we could really have in one another.  Through all of that, I could remain steady, remain the rock that held everyone together and kept us reaching for our goals, even as my own body crumbled and I feared the deterioration that was happening on a daily basis.

Each time I began a new job, I’d let my General Manager and our Human Resources Director know about my condition, just so they would be aware in case anything sudden were to happen (an obstruction, a surgery, etc).  I prided myself on the fact that my symptoms never affected the quality of my work or my dedication to my job.  I was constantly being given more responsibility, beginning to crave it like a drug, as I proved to myself and everyone else that I could do this, and that my disease wasn’t going to stop me, despite constant warnings from my doctors that my sixty to seventy hour workweeks weren’t doing my body any favors.  I convinced myself that I could be the exception.  I was in charge, not my body.  I led a team of seventy people, for god’s sake!  How could I be in charge of all of them and not my own disease?

Despite some bumps, overall I managed very well until this last year, when a job transfer for my husband relocated us from Philadelphia to Austin, a move which I was very excited about and was able to find a great opportunity of my own.  The hotel was massive, the biggest in the city, and the last four of my predecessors had gone on to work as Regional Directors of Operations for the company.  It was a huge team, but I had always had great confidence in my ability to lead a team and produce results, so I wasn’t worried.  Determined, yes.  My husband was not as thrilled with my new job, worried that I was finally going to push my body to its breaking point.  The fact that I did not listen to him wasn’t so much about the fact that I am stubborn as a mule (which I am), or that I didn’t value his opinion (which I do).  In the ten years since I had been diagnosed, I had challenged every limitation I had ever been given and I had won.  Doctors didn’t know if I would work again, eat again, even survive several of the surgeries that I had undergone.  The final takedown surgery I had in June of 2008 was only about eight weeks before I got married, and I had to convince the surgeons to do it, as they worried that I wouldn’t have enough time to recover before the big day.  I did.  I walked down the aisle that day like a boss, proving all the naysayers wrong once again.  Each challenge had given me more of a craving for that high that comes from doing what many others thought wouldn’t be possible.  This was about me proving to my own body, to the disease that was still raging inside of me, that I was the one in charge, goddamnit, and I wasn’t going to let my own body get in the way of the future I had worked tirelessly to pave for myself.

I started the new job within three days of relocating to Austin, and it was a great coping mechanism for moving to an area where we knew absolutely no one.  I was thrown into a team and hit the ground running, doing what I do best, putting out fires as they arose and restructuring our team from the ground up.  I informed the HR team about my illness as I always had in the past, never thinking my body would start to retaliate so quickly.

The hours were insane and the stress was constant.  My husband and I saw incredibly little of each other, and the days at work were often so crazed that despite my best attempts, I missed meals, slept like shit, and postponed doctor’s appointments.  The obstructions started again, as did my bouts with pneumonia and the flu.  After about six months, my husband pleaded with me to look for another job away from the operations side of things, toward something with more stable hours in the hotel world, like human resources or sales.  And I tried.  I did.  I could see that my body was rebelling, so I thought I would just shift gears and regroup a bit.  But no one wanted me for anything other than my operational background, because that’s where I had a great track record and produced all-star results.

The weeks came and went, and as my health continued to decline, my husband began talking to me about just quitting completely, and taking some time off to rest.  That notion was inconceivable to me.  I had never been without at least one job since I was fourteen, and was certainly not ready to face my disease head on, without even the pleasantries of a distraction from work.  There were so many straws piling up so fast, it was hard to tell which straw actually broke the camel’s back, but the situation came to a head one November day when my husband had to fly out of town at the last minute to visit his ailing father who was back on the east coast.  I had been fighting off a cold for a few days and was feeling like crap, but I assured him I would be fine and that he needed to go tend to his father.  The weekend coming up was going to be a huge one at the hotel, as it was the weekend of the Formula One Grand Prix, and I knew that I would be working fourteen or fifteen hour days anyway, so I figured this would keep him off my back.

The cold continued to get worse, and by that Friday, I was sitting in my office bundled up in every article of clothing I could find, freezing with my teeth chattering as my body trembled violently.  I had been at work since 7am that morning, and by 8pm that night, I wasn’t sure I would even have the strength to get myself home.  There were still tons of guests arriving, but I knew my team had things under control and I left the hotel.  Talking to my husband a short while later, he convinced me to go to the ER, which at that point I agreed was a good decision.  After about an hour there I was diagnosed with pneumonia again, and even in my severe state of denial, I knew there was no way I was going to be able to go to work the following day.  I called my boss to tell him and let’s just say that the response was less than I had hoped for.  Despite all of the hours I had put in, despite all of the results I had already given them, despite my warning them early on about my health condition, I was being told in no uncertain terms that I needed to be there the next day.

Like an idiot I went in, did what I needed to do and left early that day.  I called in sick for the next three days and when my husband came home, I told him I was ready to put in my notice.  Me being me, I wanted to give them about a month’s notice, not because I felt I owed my boss anything, but because I owed it to my team to tell them individually, wrap up any projects we were working on, and help find my replacement.  My husband reluctantly agreed, and the following week I sat down and told them that I would be resigning.  I don’t think they believed me, and I didn’t even believe the words myself as they came out of my mouth.  Alarms were sounding off inside my head, reminding me that I had worked so hard to get where I was, and that I was so close to reaching the top.  The top of what?  Was this what success looked like?  I was 33 years old, fifteen pounds below my normal weight, hadn’t slept well in months and hadn’t spent a single day off together with my husband in close to eight months.  I was tired, weary and knew that I was giving in to the disease.  It was one of the worst days of my life.

It has been almost a year since that day, and I am physically much better than I was then.  I am now working part time in a different field, sleeping eight hours a night and eating well and regularly.  I spend nights and weekends with my husband, which has been wonderful, and I’ve caught up on all my doctor appointments.  Save for the last few months, where I had pneumonia again and four obstructions requiring hospitalization (I have a lot of scar tissue and need to get that surgically corrected), I’m in a much better place, health wise.  And I know this is the part where I’m supposed to say that I’m so glad that I quit and it was the first day of the rest of my life and that I don’t miss it.  The truth is, I can’t say any of that.  Do I know that logically it was the best choice for me and my health?  Of course.  I can’t make my heart understand that, though.  I so miss my crew, my sense of independence, and the career path that I had set for myself that was doing so very well.  I miss the feeling of walking out of the building at the end of a long and crazy day, knowing that the shit almost hit the fan but that my team pulled it off, and the guests were never the wiser.  I miss watching my team members learn and grow, seeing the results of all their training and practice.  I wonder what I could have been.  I wonder if I will ever do anything again that will give me the same sense of satisfaction, that feeling of watching a team in motion with all its moving parts and knowing that I helped to create that.  I don’t know.  It is something that I think about every day and that will probably never leave me.  We’re always told as children that we can do anything we put our minds to, and I believed that for a long time.  But what if you can’t?  What if your own body is your worst enemy?  How do you fight an aggressor when it is your own reflection in the mirror?  I wish I knew the answer, and I hope I’m getting a bit closer to it each day.

Bowel Obstructions and NG tubes

Bowel obstructions are something that many with IBD have to deal with, whether it be on an occasional basis or something more frequent if issues other than food consumption are at play.  For potential obstructions, there are a few signs to look out for: severe abdominal pain (not sure if everyone’s is the same, but the only way to describe mine is that it starts out like someone is kicking me in the stomach and usually culminates with me feeling like I’m being ripped in half at the midsection; this usually is paired with some Linda Blair-like head spinning once I’m at the point of going to the ER until the happy juice is administered), nausea, vomiting and a lack of bowel function (for full obstructions, you will be unable to defecate or pass gas, though you may be able to have some very liquid stool with a partial obstruction).  What I will detail below is simply my own personal plan of attack when the initial signs of an obstruction hit; I want to be clear that being seen by a medical professional is always advisable in this case, and if I don’t feel as though things are moving at all and I get to the point of nausea, I head to the ER immediately.  In the event that you cannot get to medical attention right away, or if it seems as if it’s only a partial obstruction you have, I recommend everyone have a good, reliable heating pad (I have one super charged infrared model and then three basic backups) and Welch’s 100% grape juice on hand.

First, if you suspect you may have a bowel obstruction, stop eating and drinking (with the exception of the grape juice instructions below).  Should you end up in the ER, going NPO (nil per os in latin, meaning to withhold oral food and fluids from someone) is the first thing they are going to do anyway.  Get a tall glass of the grape juice and lie down with a heating pad on your stomach.  This will likely not be a quick process; obstructions can take anywhere from a few hours to a few days to pass on their own, even with medical intervention.  Sip the grape juice slowly and let the heat relax the muscles in your abdomen a bit.  The purpose of the grape juice is that very sugary drinks often have a laxative effect on IBD patients, and this can help get things moving in the right direction in some instances.  Though you will be in pain, get up to walk around at regular intervals for 10-15 minutes at a time, as walking can help to move things along as well.  At this point, you basically wait things out until the obstruction passes (you may feel it begin to move through your system, the pain will lessen, and you will be able to eventually pass gas and/or stool) or you reach The Point of No Return.  Given my frequency having obstructions and after discussing this subject at length with my surgeon, I have defined that point for myself as that when I begin to get severely nauseous and/or I begin vomiting.  If that happens, from my experience the obstruction is likely not going to pass on its own and I need to get my ass to the ER.

Sad but true, I keep a small overnight bag packed with supplies at all times in my closet for just this sort of occasion.  The bag has some comfortable, hospital-friendly clothes, a few of my own designer hospital gowns (we’ll get there), my basic toiletries, etc.  For times like this, it’s great to know that everything I need is with me in less than five seconds in the event of a hospital admission.  Remember that little side note about the glorious My Medical app?  This is where it comes in handy.  My husband grabs one of the printed copies that we keep at home from the My Medical app (as I noted earlier, we also keep one copy in each car in case this should happen while we are out and about) and we head over to the local ER, which is about 15 minutes from our home.  Generally speaking, I have found that Urgent Care centers don’t tend to deal with patients with complex issues, so the ER is my go to.  Once checked in, the nurse takes us back and my husband gives him or her the copy of my medical history or “owner’s manual”, as we lovingly refer to it.  By this point, given that I’ve had roughly about 25 obstructions needing some sort of hospital care over the last 13 years, we know the “cocktail” that usually tends to do the best job when administered to get things moving again.  If it’s your first time or even your third, explain your condition to the medical staff and let them do their job.  Don’t overthink it.  Once you’ve had a few of these under your belt, if you’re in a good hospital where they know you, generally they will focus more on asking questions as to what has worked best for you in the past in these situations.  Again, all heed the My Medical app.  When your pain is at a level 14 out of 10 and your head is spinning backward, you’ll be grateful that you or your significant other can simply hand over the information rather than having to recite it in a voice that will probably sound slightly demonic.

Usually the “cocktail” in question will involve some saline fluids, a painkiller to ease some of the abdominal cramping and help the smooth muscle tissue stop going into spasm, and an anti-nausea medication to alleviate the nausea and vomiting that may be occurring at this point.  Occasionally, a drug facilitating intestinal motility will be administered at the discretion of the doctor.  Different combinations will work for different people; once these meds are administered they can begin the testing process, which will usually involve a urine sample, bloodwork, an x-ray and possibly a CAT scan.

In some cases, the administration of the appropriate medication and some time will be all the treatment you may need to clear an obstruction.  There are times, however, that even antinausea medications cannot suppress the vomiting, and an NG (nasogastric) tube will need to be inserted to drain the digestive system of its contents, therefore allowing the stomach, bowel and surrounding areas to rest.  I am not going to lie even a little here – this device is a modern form of torture and it is going to suck – but a few things can help you deal with it.

Basically, a thin plastic tube is inserted up your nose, down the back of your throat and continues down the esophagus to the stomach, where it drains gastric secretions out the tube and into a container that is normally mounted on the wall behind the hospital bed.  The insertion of the tube isn’t painful per se, but I have found it extremely uncomfortable, and staying relaxed to allow the tubing to be inserted isn’t the easiest thing in the world.  Should it become necessary to have an NG tube inserted, check with the doctor or nurse to see if they will approve a dose of Ativan (an anti-anxiety medication that also can assist with muscle relaxation) before the tube is inserted.  This will help ease some of the anxiety you may have, as well as relieve some of the involuntary muscle contractions that occur when one becomes highly anxious and/or stressed.  Also, if you ask to have a glass of water present, this will help you to encourage swallowing, which will assist the nurse in getting the tube inserted properly as it passes down your throat.  It is possible that you will vomit as the tube is inserted (I have done it several times), as the tube going down your throat can trigger a sensitive gag reflex.  Don’t worry about it, as the medical staff are used to it (or at least that’s what they told me when I tossed my cookies).  Once it’s inserted completely, they will adhere the tube to the bridge of your nose with some tape so it doesn’t move around too much.  Hopefully if one has to be inserted, it is only in for a brief time; after one of my surgeries I had it for three weeks and was so happy when it was finally removed that I actually cried.

During the time that the NG tube is in, you will be unable to eat or drink, though in moments of desperation, sometimes you will occasionally be allowed ice chips.  I will fully admit that at one point during the lengthy time I had the awful thing, I convinced a family member to smuggle me in some Rita’s water ice, figuring the NG tube was just going to suck it out of my stomach anyway.  I was halfway through a pint of it when one of the nurses caught me and confiscated the remaining half pint.  I think I may have tried to windmill her.

Once they believe the obstruction has cleared, the tube will be removed; the removal isn’t nearly as uncomfortable as the insertion, but it is still a very odd feeling to say the least, almost as if someone is trying to pull your brain out of your nose.  It’s over very quickly and then you may have a sore throat for a few days, but beyond that, you shouldn’t have any other issues after it’s out.  From there, you should be allowed a clear liquid diet, and if that is tolerated well, a progression to full liquids and then soft solids are generally given before you are given the all clear.

If you haven’t had to deal with an obstruction or an NG tube before, hopefully this will give you a little idea of what to expect and some pointers on how to cope.  I hope you never need the info, but if you do – voila!


Dealing with Unsolicited Advice

First, let’s just get this out of the way now. At some point along your journey, you will likely be confronted by some ignorant douchebag that is convinced that he or she can cure your IBD with a particular protein shake, a vitamin supplement, or by eliminating some major food group from your diet.  How you choose to respond is entirely up to you; while I can’t condone violence as the answer, I would be lying if I said that it wasn’t my instinctual response 99.9% of the time.  Instead, I typically take a more passive-aggressive approach, which both allows me to feel as though I’ve given a verbal sucker punch to the face while the recipient is made aware that I find his or her unsolicited bullshit rather offensive, which in my mind lowers the odds that they will make this vile mistake again.

Recently, my husband and I were lounging by our community pool one afternoon, a day or two after I had been discharged from the hospital for a bowel obstruction. One of our neighbors a couple of streets away strode up to our chairs and began to tell me that she heard I was recently in the hospital for my Crohn’s and wanted to let me know that she would love to work with me to get rid of the disease.  Mind you, the pool was crowded that day and there were probably 15 people within earshot, not one of whom I had ever shared a drink with, let alone my entire medical history.

I gave her one of my “you’re going to be so sorry you did this” kind of smiles, and asked her exactly what this miracle profession of hers was. Magician? Plumber?  Perhaps a chiropractor, being that she was probably in the regular habit of pulling her head out of her own ass?  You can imagine my disappointment when she revealed that she was, in fact, a life coach.  This woman standing in front of me, the same one who could not find the presence of mind to pick up the dog shit in her own front yard, was now offering me her expertise in life for a nominal fee.  Seeing sixteen different shades of red, I told her that I thought selling false hopes to people with chronic conditions that she couldn’t ever possibly begin to understand for her own financial gain was a dick move.

Now, let me clear one thing up before we go any further – for the record, I am a huge fan of chiropractic care and utilize it as a part of my own regime for overall self-care, and life coaching, while kind of sounding rather new-agey and vague to me, is probably a very valid profession for some, though I don’t know that I would count this woman as one of them after this experience. I’m sorry, but hitting up sick people in public pushing your services on them isn’t the best business decision in my opinion.  I mean, if you saw a dentist handing out his cards outside of a meth lab, you might be amused by his choice of advertising, but would you really want him to be your dentist?  I digress.

Bottom line, if it smells like a tacky sales pitch from an uninformed jackass, tell Jack you don’t need his Magic Beanstalk Beans, or his fucking nutritional shakes, either.  Do your own research on various alternative treatments and only choose those that make sense for your life and your symptoms.  Having IBD can be outrageously expensive, and you don’t want to waste a bunch of money on something that’s totally pointless.  And most importantly, have reasonable expectations.  Going into something with an open mind to see if it helps some of your symptoms is a lot better of a position to be in than expecting one miracle treatment or product to cure your IBD.  It takes a village and a small army to keep our bodies functioning, and while I would love to believe that one pill or supplement could magically cure us of this shitty (see the pun there?) disease, we’re just not there yet.

Yes, I might seem a bit pissy and harsh with my commentary, but it angers me when the general public treats us like we are lab rats for their own personal financial gain.  I am a human being damnit, and so are you.  If you are unfortunate enough to have IBD or another autoimmune disease, you’ve been through enough that you shouldn’t have to deal with their unsolicited bullshit, too.  It feels damn good standing up for yourself and letting people know what you will and won’t put up with.  I’m not saying it’s the first step in How to Win Friends and Influence People, but then again, that wasn’t the title of this blog, now was it???

Be well!

Holiday Eating

Whether we accept it or not, the holidays are fast approaching, and with them come the temptations of foods we don’t normally eat.  I’m not talking about the extra servings of desserts that add that comfy padding to our hips, or the dozens of “coffee” drinks that appear this time of year that contain more shit than they do actual coffee.  No, I’m talking about the appearance of things that you know you really can’t have, at least not without a trip to the ER.
The infamous coconut macaroon incident of Christmas Eve 2011.  I remember it well, and it has kept me on a fairly straight path ever since, mostly because, as many of you know, the pain of an obstruction is something that I can only compare to that scene from The Princess Bride when Wesley is stretched out on that death machine after being captured by Prince Humperdinck’s men.  (Not that I’ve seen the movie a lot or anything…)  Remember that scene when Humperdinck runs in and cranks the machine up to ten and poor Wesley is writhing and emitting ungodly sounds?  To anyone who hasn’t had one, that’s my example of what an obstruction looks and feels like, and I think my poor husband who has witnessed more of these than he cares to admit would agree.

Anyway, during that holiday season of 2011, things had been very quiet with regard to my health for close to four months.  No crazy obstructions, no weird diets, almost…normal.  My husband and I were spending the holidays in Boston with his family, and I was eager for a few days of amazing Italian food, cappuccinos at Caffe Vittoria and a few obligatory stops at Bova’s Bakery.

Boston is a real foodie town, and my chef husband had gotten me hooked on his favorite staples on our early trips up there. Each trip always involved several stops at Bova’s, a bakery that had been in the North End since his days as a culinary student at Johnson & Wales.  Bova’s is exactly what a bakery should be, owned and operated by the same family since 1932 on a corner lot in the North End and open 24 hours.  It’s a dessert queen’s dream and a low carb dieter’s nightmare, not that anyone on a low carb diet has any business being in the North End anyway.  We would stop there the day we arrived, after a nice Italian meal and an espresso, again to pick up confections for the annual Christmas Eve extravaganza at his brother’s house, and once more the day we departed.  More than once I have swaddled a loaf of their fresh baked bread like a baby and carried it onboard the plane with us to head home.  It’s just that good.

We had been in town for a couple of days already, and were stopping by the bakery to pick up a ricotta pie and some cannoli to bring to my brother in law’s for Christmas Eve dinner. Seeing my glazed look as I stared longingly into the displays of cookies, cakes and breads, my husband told me to pick out something for myself as an afternoon snack to tide me over until dinner.  I walked from case to case and came face to face with my kryptonite – the coconut macaroon.  They occupied three shelves, beckoning me with their light and airy sweetness.  Sure, I hadn’t been able to eat coconut successfully in the last nine years, but the last few months had been so good.  I wouldn’t get many of course, just two, and if I chewed them really, really, really well and washed them down with lots of water…(by the way, I now think I have a complete appreciation for the thought processes of the average addict).

The lady behind the counter put two small macaroons in a paper bag for me and we ventured back out onto the snowy streets clutching our treats. Back in our hotel room, I put the macaroons on a plate and poured a small glass of milk to go with them.  This was an event.  I bit into the first one and my eyes rolled back in my head, the sweet, forbidden flesh of the coconut my ultimate high.  I ate them slowly and deliberately, chewing every bite enough that my jaw ached by the time I had finished them.  I drank two glasses of water afterward and went to lie down for a nap before dinner.

About an hour and a half later, I woke to get dressed to head to my in laws, and as I applied my makeup, I felt a sharp pain, as if someone had kicked me in the stomach. Ignoring it, I continued on, the pains becoming more sharp and frequent as we got into the car for the short drive to the suburbs.  My husband took one look at me and pulled into a CVS pharmacy, returning a few minutes later with a bottle of grape juice, a heating pad and an I-told-you-so look on his face.  Fifteen minutes later, at his brother’s house, I bypassed greeting the family and headed straight for the guest room, plugging in my heating pad and letting it warm my stomach as I sipped the grape juice.  The pain was excruciating now, and literally took my breath away as it came in waves.  Fucking macaroons.

I lay on the bed like that for about six hours, the afternoon light fading into darkness as I could hear the party gaining momentum down the hall. My husband came to check on me several times, asking each time if we needed to go to the hospital.  We probably did, but I sure as hell wasn’t going to admit it, and as I mentally kicked myself for falling into the coconut macaroon trap, a true Christmas miracle occurred.  As another wave of pain hit and I gasped, I heard a popping sound and could feel the lodged material start to work its way through.  I waited another hour or so and finally sat up, breathing deeply.  I was through the worst of it.  I gingerly made my way down the hall and joined the rest of the group in their merriment thankful that this wouldn’t be known as The Christmas We Spent in the Emergency Room.

The moral of this story – chew, chew and chew some more. Tread with caution when trying any heavily fibrous foods.  Be mindful during the holidays when things tend to contain far more sugar and richness than your system is used to processing.  Corn, shredded coconut, mushrooms and dried fruit pretty much always end up in an ER visit for me, so I haven’t eaten them in years.   It’s all about seeing what works for you, what doesn’t, and making modifications accordingly. And when you do come across your kryptonite, having the presence of mind to walk the hell away.


Dietician Advice

Recently, after a couple of hospital stays due to my electrolytes being really screwed up from absorption issues, I took up my GI doc on his offer of a referral to a dietician for a consult. In retrospect, I probably should have gone a lot sooner given that I’ve had Crohn’s for 13 years now, but hey, what can I say?  Guess I had my head up my ass.

I’ve always been a pretty healthy eater (everything in moderation kind of thing) as far as eating my fruits and veggies and such, though I will admit that ice cream was my vice and has been for years. I figured that another set of eyes couldn’t hurt to see if there was anything I could be doing differently in my day to day routine.

I had sent the dietician a three day log of my eating prior to the visit at her request, so she would have time to analyze it, and was happy to hear that for the most part, my diet was great and she was happy with my food choices. As we began to talk, she asked me what I hoped to accomplish from the visit, given that I wasn’t trying to lose weight, and I explained my long history of IBD and surgeries to her, focusing specifically on my low potassium and magnesium counts the last few months.  I told her that since I know I don’t absorb all of the nutrients that I am eating, I want to “front load” my diet as much as possible with vitamins and minerals.

I came away from that first session with a couple of handy tricks that have helped in the last few months. My first question for her was about a water supplement to help with electrolyte balances; I had been drinking lots of water and was supplementing with coconut water for potassium once a day, but a lot of the coconut water products are caloric and have extra sugar that I didn’t want.  I also wanted something portable, that I could throw in my lunch bag for work and add in to water as needed.  She recommended Nuun drink supplements for this, which I have a link to on my Resources page.  I was lucky enough to find them in my local grocery store, but in case you can’t find them you can order them right from the website.  There are several different flavors (the pink lemonade and lemon lime are my favorites) and each tablet is about the size of a quarter and dissolves quickly in water.  It fizzes slightly, almost like an Alka-Seltzer, and each tablet contains 10 calories, 360mg of sodium, 100mg of potassium, 25mg of magnesium and 13mg of calcium.  There are no artificial sweeteners added, which I also liked.  I’ve been adding them to my water bottle at least five times each day, and I’ve definitely seen improvement in my electrolyte balances.

Potassium in particular can be difficult for those with IBD to sustain, as absorption is compromised if the colon is diseased or removed, and a lot of the sources that many mention as being so good for “normal” people are freaking death wishes for many who have Crohn’s or Ulcerative Colitis. Potato skins?  Spinach?  Seriously, why don’t I just start driving to the ER while I eat those to save some time???  Bananas are the one potassium-rich food I really enjoy and don’t cause problems for me (quite the opposite, actually.  During flares, they are actually one of the few foods I can still eat), but I was already eating one at breakfast every day and unsure how to get more of them into my daily diet.  Remember my aforementioned affinity for ice cream?  No more.  I buy bananas now in quantities that probably resemble those of a premenstrual monkey, let them ripen and freeze them.  As a treat a few times a week at night, I throw two chopped up frozen bananas into my Vitamix with a tablespoon or two of natural peanut butter and a little coconut almond milk to make it a bit easier to blend and…that’s it.  It comes out the same consistency as ice cream and honestly tastes even better.  Most days I eat it plain like that, but some days if my belly is behaving I’ll top it with a few dark chocolate chips or some toasted walnut pieces.  So incredibly good, and packed with potassium!  #winning

A final piece of valuable information I came away with during that visit was that I needed a daily dose of a quality protein supplement, ideally one that would supply potassium as well. I had already been using a protein powder here and there, mainly when my belly wasn’t agreeable and I would use it as a meal replacement until my flare was under control.  For that, I had been relying upon the protein powder from Arbonne, which I like for several reasons.  It has no artificial sweeteners, has 20 grams of vegan based protein (I’m not a vegan, but I don’t typically drink milk and I find that in a flare, avoiding dairy and soy products isn’t the worst idea), and tastes pretty great.  The only caveat to it was the price; at almost $70 for a one month supply, I wasn’t using it every day.  The dietician suggested an alternate protein supplement called Unjury, and gave me a few samples to try.  The chocolate flavor was amazing, and while it didn’t have as much potassium as the Arbonne powder, for only $22 it has enough that I can use it as a daily supplement and save the Arbonne powder for times when I need the extra electrolytes and protein, like during a flare.  Here’s how they each measure up:

Unjury Chocolate Splendor: $22.00                         Arbonne Chocolate Protein Powder: $69.00

100 calories                                                                         170 calories

150mg potassium                                                             370mg potassium

85mg sodium                                                                     540mg sodium

21g protein                                                                         20g protein (vegan)

3g sugars                                                                             9g sugars



I’ve been using the protein powder daily now, and really notice a difference in my energy levels and my recovery time while strength training at the gym. Definitely a good idea to consider if you’re having trouble keeping weight on or maintaining a proper diet while in a flare.  You can certainly explore other brands to see what you like; these just happen to be my preferences.   And try experimenting with them!  I add protein powder to my smoothies, my oatmeal, even my muffins and protein bars that I make to keep the nutritional content as impactful as possible.   You can also drink these as a meal replacement; typically when I do that I’ll add a banana (of course) and sometimes a little PB2 to the blender to make a smoothie.  Give them a try and let me know what you think.  And, on that note – have a great weekend!

A Laugh for Today

So I know I need a laugh today, as yesterday I had an awful day, spending a large part of it at the radiology clinic downtown chugging gag-inducing amounts of barium down and then spending the next three and a half hours having pictures taken every 20 minutes so they can try and pinpoint where the narrowing in my small intestine is, as I’m considering the possibility of a surgical option to correct this.  Seriously, how in the hell is it possible that medical advances have come far enough along that we can use the heart of a baboon in a human’s body, yet no one has come up with a way to make that god awful chalky barium nightmare taste any better???  Anyway, thank god that is over, and in the spirit of having a better day today, I thought I’d share an experience I had with my ostomy right after I was cleared to eat what I wanted from my surgeon after the colectomy in 2006.  Those of you whom have suffered for years know what an odd concept it is to reintroduce actual food into your bodies.  Hope it makes you smile.

About two weeks after my initial surgery to remove my large intestine due to the toxic megacolon, I had my follow up with Dr. S, who removed the sutures from my abdomen and said those magical words that I will never forget: “Go forth and eat”. I waited for him to read off the list of foods I should avoid, and when he didn’t, the full impact of how my life was about to change was realized.  For four solid years, I had been defined by rigid lists of what I could and could not ingest, the former being far shorter than the latter.  I actually had begun to write a “wish list” of foods to eat while I was in the hospital recovering, which was the only thing that kept me from being completely preoccupied with the ileostomy.  The list was long and varied, containing everything from large salads with fresh vinaigrettes to corn on the cob to pints and pints of berries of every variety.

That afternoon when the mail came, there was a get well card from one of my aunts, and what she included in that card remains one of the best and well-timed gifts I have or will ever receive: a $300 gift card to Whole Foods.

I immediately got in the car, my driving privileges now restored, and drove the five minutes to the market, fantasizing the entire time about what I was going to buy. I had no idea.  For years, grocery shopping for me had been like bar hopping to a recovering alcoholic.  What was the point?  Excitedly, I grabbed a cart and began to wander the aisles.  I roamed for hours, picking things up and smelling them, putting them into the cart and then deciding later to put them back to make room for other, better things, as if it was my Last Supper.  Two hours later, my cart piled high, I headed home, unsure of what I would eat first.  I didn’t even bother to put all the food away when I walked in the door, instead leaving full bags on the counter and heading to the couch with three pints of berries and my phone so I could order a sandwich for dinner.  There was a shop that had opened nearby about a year before, and I knew beyond a shadow of a doubt that I needed to have their roasted vegetable sandwich for my first meal at home as a free woman.  My hands trembled as I dialed, the junkie now desperate for her fix.

About 30 minutes later, the delivery man arrived with my prize in his hands and, while I tipped him well, it was overshadowed by the fact that I yanked the brown bag out of his hands like a rabid dog. Tearing the paper away, I bit into the sandwich as I was walking away from the door, the delivery man still gawking at me.  The explosion of flavor was so foreign to me after so many years…it was as if I had never eaten before.  I can still recall with remarkable intensity the crusty baguette, layered with fat Portobello mushrooms, roasted red peppers and buffalo mozzarella, all coated in a vibrant green pesto.  While I would love to think that the moment was straight out of a Padma Lakshmi Carl’s Jr. commercial, complete with sexy music and lots of finger licking set in slow motion, I’m fairly certain that the act was far more similar to a scene from Animal Planet’s Shark Week, my sandwich the unsuspecting prey in this bloody massacre.

I think I finished the sandwich in under five minutes, and as I sat there on the couch, surrounded by empty berry cartons and shredded parchment paper from The Sandwich, I wondered if I had perhaps literally bit off more than I could chew. I stretched out and listened to my body receive this wonderful food, its gurgles and grunts, and could actually feel each bite being digested as it pushed its way through my new system.

I began to feel more pain about two hours later, and decided to take a shower to help soothe my stomach. In the bathroom, I detached the ostomy bag from the wafer still attached to my stomach and got in, letting the steam relax me.  I looked down, still violently shaken by the piece of protruding intestine along my left side.  As the water beat down on my back, I looked more closely at the stoma…it looked redder and more extended than it had in the last two weeks.  The nurses had warned me about overexerting myself too soon, as this could end up causing a herniated stoma, which would require another procedure and more sutures.  I squinted in the steam as it moved and thought I was about to pass out.  I jumped out of the shower and immediately dialed my mother in a moderate stage of hysteria.

She listened to me as I gave her the details, and as we talked, I could feel the stoma straining against my skin. Oh god, it was happening.  I held the phone to my ear as she calmly instructed me how I was going to have to push the stoma back into my stomach and then go to the Emergency Room to have them reattach it to my abdominal wall.  I felt nauseated and anxious as I stared at myself in the bathroom mirror and watched as the bright pink flesh lurched forward again.

“I can’t do this!” I cried, as she gave me instructions very nonchalantly over the phone. I brought my right hand down to the stoma and squeezed my eyes shut, my fingers hovering an inch or two away from it.  Suddenly, I felt something slimy and smooth touch my hand and my eyes flew open.  Nope, not a hernia.  I was passing an entire, undigested strip of roasted red pepper, a result of my rather crazed (and apparently poorly chewed) meal several hours before.  Thank god I hadn’t gone to the ER.

Happy Thursday!

Helpful Phone App for Medical Records

Keeping track of your medical history can be quite a task, not to mention making sure that all of your physicians are kept in the loop. Thank god for the My Medical app (available via multiple platforms), which is only about five dollars to download, and may well be the best money you will ever spend.  This handy tool allows you to store medical information for multiple people, each with their own individual profile.  It will prompt you to enter everything from basic general information and emergency contacts to current and past medications, tests, procedures, surgeries, allergies, diagnoses, immunizations, hospitalizations, complete physician information, family history, health insurance….the list goes on and on.  You can add notes for certain hospital stays (mine typically reflect which medication combinations tended to clear my obstructions most quickly) AND, best of all, you can wirelessly print the entire document or email it at the touch of a button.  Being that we are rather frequent flyers at the local ER, I have three copies printed up at all times (one in my car, one in my husband’s car and one in the office at home), so upon arrival to the ER, we simply hand my “owner’s manual”, as my husband likes to call it, to the nurse and he or she instantly has all the information she needs.  At doctor appointments with new physicians, I simply ask them for their office email and my entire record system is automatically transferred within a minute.  It is a beautiful thing.  It also comes in quite handy when I am gorked beyond belief on pain medicine and a question arises about a surgery or medication.  My husband can simply refer the person making the inquiry to the app instead of my incoherent ass.  Magical.

For things like my bookshelf full of surgical records and the like, I took all of them and scanned them to myself at home, saving a master copy on a zip drive and several duplicate copies on thumb drives that I can send out when requested by a physician. I will admit that the process took about a week to do, but once it was done things were so much easier.  As sad as it is to admit, the files were far too big to email, so this is a quick and efficient way to get the info sent out in a timely manner.

If you are in the hospital with any frequency or have multiple conditions and doctors, please take the time to download the app and enter in all your info.  It will make life so much easier in the long run!

Thoughts on my Anniversary

As the eighth anniversary of my first surgery approaches, I find myself recalling the days leading up to it and the events that followed in vivid detail, as tends to be the case each year. I don’t really do it with a sense of brooding or sadness; often times it feels as though I’m almost watching a highlight reel of someone else’s life, as I still occasionally struggle with incorporating both halves of me into the same person, if that makes any sense at all.

With so many surgeries occurring over a two year period in my life, one of the two that stay with me the most was the first surgery I had, the emergency colectomy done on November, 2nd, 2006.  I know why the first one is so important, of course, as that is the day my life changed forever.  It is the day I was given a second chance, and a day that my worst fears (at the time) were realized.  Up until that day, regardless of how horrid I felt, how completely frustrated, isolated and in obscene pain as I was, my worst fear was the dreaded ostomy bag.  Until that day, all my agonies were invisible to the outside observer, my friends and family included.  There were no scars marking up my body showing where I had been cut, where parts of me had been removed.   As a self-accepted control freak, I preferred it this way.  While in the privacy of my own company, I could be curled up on the bathroom floor, lying on a blanket and clutching a heating pad to my abdomen as I sometimes cried, but more often just stared into space, dissociating from my body and all that was happening to it as some last-ditch attempt at self-preservation.

The key was that no one else had to know this. So long as I knew about public appearances or events in advance, I could entertain my ridiculously long preparation rituals, which included abstaining from any and all food for at least 24 hours to ensure that I could keep the pain in check, taking narcotics (prescribed, of course) to kill what pain was still there, putting in hair extensions to cover up my ever increasing hair loss, and layers of makeup to conceal rather theatrical dark circles under my eyes that refused to disappear and skin that wasn’t a normal shade or tone given my vitamin deficiencies.

To that end, I think sometimes the best (and simultaneously, the most frustrating) comment I would get from people, close friends and family included was “You look great!”, as if somehow stating that out loud lulled them into a delusional fairytale, one in which I wasn’t sick. While I desperately wanted (and still do) to be seen as “normal”, it also infuriated and isolated me even more.  Regardless of how good of a master I had become at concealing the evidence, how could those who knew me best not see that I was spiraling into a mere shell of a human being?  Of course, I know now that denial is a powerful ally, and others were having difficulty processing what they were witnessing me go through as well.

It was that first surgery though, that in a way saved us all, me included, from pretending that everything was really okay, and brought me back into the present like a kamikaze pilot. Now there was an angry scar bisecting my abdomen and a plastic bag hanging from my stomach like the flag of an enemy country.  I could look in the mirror and as much as I tried, could not will away the image of my new reality, and while I know that I continued to disconnect from my physical presence over the course of the next few years, seeing those scars gave a face to the villain against whom I had been fighting for the past four years.  No more was the ostomy bag my worst fear – death was.

Of course, clothes could cover my body’s new landscape, and since I was so protective over my gutted abdomen, very few people ever saw me with the ileostomy, including my then boyfriend. It took me a year or two to get familiar with my body again after the last surgery I had to reconnect my j-pouch in 2008, and I finally got up the confidence to say “fuck it” on a family vacation in Costa Rica that year.  Realizing that I knew no one on the beach and would never see these people again, I wore a bikini for the first time since I had become sick.  People stared, I’m not going to lie, but in that one freeing moment, I realized that I no longer gave a shit.  I loved my scars for what they stood for, and what they reminded me of every single day.  They were proof, both to myself and to anyone forced to look at them, that my body has been to hell and back.  No more pretending, no more bullshit.

There are still times when some close to me utter that line “but you look great!” and I cringe inside, recalling the previous night where I didn’t get any sleep because I was running to the bathroom and soaking in the tub every fifteen minutes, recalling the five different meds I’ve taken that day so my joints wouldn’t be stiff and swollen, my stomach would behave and the nausea diminished. I realize now that as I’ve had my own journey with accepting the fact that a hellish beast lies within me, and that within that same body lies the strength that rises to fight it every day, others may still be struggling with associating these two halves of me together, and its likely not an easy thing for them to process either.

The scars are a rearview mirror of sorts, reminding me of where my body has been, and where it very well may go again at some point in the future. They are a reminder to stay in the present, to fully accept my past for what it is and to be grateful for the future that I have been given, regardless of the uncertainty it may contain.  I hope those closest to me will eventually be able to not just look past them but actually see them for that very same thing, thus finally being able to accept me in my entirety.

There’s a song by Tom Langford that I heard at one point during what has been my worst and most difficult recovery; I downloaded the song because it was beautiful and resonated so deeply, but rarely let myself listen to it because it still brings back painful memories. The lyrics to it are incredibly evocative of how I have felt and sometimes continue to feel as I navigate the more difficult times with my illness.  I’ll leave you with the words to the chorus, a haunting melody that somehow seems to encompass everything about this post in its own way.

“I would dive into the bottom of the well

Looking for you

Breaking the spell

Oh, you’ll never know and I’ll never tell

All that I am

Heaven and Hell.”


And with that, happy eighth anniversary, Dr. S. Thank you for keeping the fighter in me alive and well, even when I was so tired and just wanted to quit.  And to both of my mothers, who worked tirelessly with me throughout my recovery, along with Aunt Susie, Judy and Nicole, happy anniversary to you, too. Your kindnesses during my worst remain some of my fondest memories to this day.  To my husband George, apparently you were the reality I was fighting so hard for at the time, though I hadn’t the faintest idea of it then.  Thank you for loving all that I am.

Establishing a Team of Doctors

One of the more important subjects for those with IBD or any sort of autoimmune disease is establishing the right team of doctors. Finding good ones, keeping them, and developing a relationship that allows for a sense of trust, which I feel is hard to come by these days.  Let’s face it, if you’re reading this, it’s not likely that you are going to be the “once a year for my annual physical” type of a patient.  You’re much more likely to be the “I need your cell phone number, vacation schedule and access to your Outlook calendar” kind.  And it’s not just one doctor you’re looking for, but likely a combination of two or even four that must talk not only to you, but to each other, to make sure everyone, including the patient, is on the same page.  This is a tremendous feat and involves a pretty kick ass Primary Care Physician.  Make no mistake about it: you will need an excellent GI doc, possibly a skilled surgeon and maybe even a hematologist, but without the coordination of a great PCP, trying to get everyone to communicate with one another is like trying to organize a monkey shit fight at the zoo.

Many people take references from friends, family or coworkers when it comes to finding a PCP, and you may luck out and strike gold that way. I have found that it often leads to frustration, because what a healthy individual may consider to be a “great doctor” may only spend five minutes with you, jotting down highlights of your medical history, only to speak to you over the phone weeks later, demanding to know why you are asking for a refill of an antidiarrheal medication when your symptoms have persisted for well over the recommended length of time for use.  This actually happened.  And when I casually asked the doctor to review my chart and see if, you know, he happened to note somewhere that I NO LONGER HAD A FUCKING COLON, there was complete silence on the opposite end of the phone and then “Oh”.  So, let’s see what’s behind door number two, shall we?

While it takes a while longer, I have found that the following process has yielded much better results in the long run. I begin by searching for PCP’s in my general area that have a specialty in Internal Medicine using the search engine provided by my insurance carrier.  Generally speaking, these physicians have a background in dealing with patients having multi system disease processes, and will be a bit more well- versed in dealing with someone having complex care needs.  Depending on your geographic area, this may weed out quite a few potential PCP’s from your pile.  After I’ve written down their names, I do a search on each one to see where he or she went to school, how long they have been practicing, and if they have any specialties that they have additional training or interest in.  Anyone that lists a specialty with IBD (in my case, particularly Crohn’s) gets moved to the top of the list.  At that point, I like to take a look at where they went to medical school and, more importantly, where they did their residencies.  If I am not familiar with a school or hospital, I will look it up to see what areas of treatment it is most known for.  Anyone attending a school that specialized in IBD or autoimmune disorders gets moved up to the top as well.  Finally, after I have weeded the names down to two or three, I resort to looking for online reviews of each one from patients, to see what the overall consensus is; however, please keep in mind that reviews are very subjective and more often than not, unhappy patients tend to be more motivated to share their experiences than those who have been happy with their care.  As a fourteen year veteran of the hospitality industry myself, I want to stress that reviews are only a small piece of the puzzle, and should not be relied upon in and of themselves for an accurate picture of a physician’s work.  A perfect example is the wait time before being seen, something which, when longer than 15 minutes, tends to set many people off and gives them a negative view of the doctor for whom they are waiting.  Now, everyone’s opinions are different on this, but I’m going to give you my two cents for what it’s worth.  It is hard to find a great doctor that will spend the right amount of time with each patient based on their needs and the complexity of each individual case.  Yes, our time as patients is important, but I would much rather spend an hour (or even two, which I have done on occasion) waiting to see a doctor that gave me plenty of time to explain my concerns and ask questions than be seen on time by someone who gives me ten minutes into which I am supposed to cram thirteen years of medical history and current concerns.  This is your health, for god’s sake, not a damn table at Nobu.  Take a pill and wait to be seen, and only then form your opinion.  Trust me, this advice is coming from one of the most impatient people you will ever meet, so if I can deal, so can you.  Bring a book.  Do a crossword puzzle.  Chill the hell out.

So now you have your search narrowed down to one or two potential PCP’s. Make an appointment and give him or her a try.  Bring a list of your medical history and your current concerns (in a bit I will go into using phone apps to do this, which is tremendously helpful and a timesaver for both patient and physician) and see how the doctor responds.  Do you feel as if you have the doctor’s full attention?  How is the interaction between the two of you?  This is important, as it is helpful to be aware of your own needs as a patient.  Do you need someone who gives you the warm fuzzies, or someone that will give you the information straight, without beating around the bush? Bedside manner is an important thing, but not just on the side of the physician.  These people are highly trained in medicine, not necessarily hospitality, so it’s really just going to be a matter of each of your personalities and if they click.

So now you have the center of your medical team, the PCP, which is a great advantage in finding a Gastroenterologist, Hematologist and possibly others whom you may need to complete your care spectrum. Ask the PCP who he or she recommends for GI care, and then proceed as above with researching the specialists individually. Cleveland Clinic, Mayo Clinic, John’s Hopkins and Massachusetts General Hospital are highly revered for their IBD research, so anytime you find those listed under education and/or residencies, it’s a pretty safe bet that you’ll receive excellent care.  By no means are those the only names to look for, but if your case happens to be a fairly tricky or complex one, they are great places to start.  Keep in mind, as we reviewed above, that the more renowned hospitals and physicians will likely be in high demand, so be prepared for a long wait, both to secure an appointment and be called from the waiting room.  It is what it is.

If you do get to the point of needing a Colorectal Surgeon, ask your Gastroenterologist for a few names of people whom he or she would recommend, and be prepared to travel a bit to see them if necessary. While I don’t want to place more importance on one doc or the next, let’s be honest – this is someone who will potentially be cutting you open, so don’t half-ass this.  For more complex cases, you may live in an area that just isn’t known for its cutting edge surgical care (as I now do).  That doesn’t mean it doesn’t exist, but you will have to work a bit harder to find it.  When I relocated from the Northeast to the Southwest, I phoned Dr. S to ask him if he had any recommendations for me in my vicinity, as I was coming up empty with my online searches and referrals from my GI.  He named someone in Houston that he respected, so my husband and I took a three hour road trip (each way) for a consult.  Even with an appointment, we ended up waiting close to two hours in the waiting room (remember what I said about patience?), but the end result was worth it, as he was highly skilled, we had a good rapport, and the facilities were state of the art.

So there you have it. Hopefully, if you don’t already have an excellent team assembled for your care, this will help you create one that you are happy with.  Do your part to enhance communication between the team members, ensuring that each has the names and contact info of the others so that any labs, tests, medication changes or procedures are shared within the group, keeping everyone on the same page and you in good hands.