BCIR Surgery Rapidly Approaching

At this time next week, I will be flying to Tampa, Florida, in preparation for my BCIR surgery on June 5th.  My boyfriend and I are leaving Philly on June 2nd to spend two days in St. Petersburg before my admission day.  We splurged on a nice hotel on Treasure Island overlooking the Gulf of Mexico.  I'm hoping these two days will be relaxing and I can squeeze whatever possible enjoyment I can before the craziness that will ensue over the rest of June.  Over the last couple of weeks I've been anxious, petrified, and excited all at once.  The day I got my admission packet in the mail I burst into tears after I opened it and read everything.  I consider myself a badass when it comes to this stuff, but when I saw it all on paper it overwhelmed me.

If any of the above makes sense to you, it will give you an idea of how my days will be spent.  It's helpful to have my daily goals in mind ahead of time.  Popsicle day definitely looks like it will get me through the first week.  SERIOUSLY.  That popsicle will look like filet after not eating for 10+ days.  What I'm not looking forward to?  That rather than previous surgeries, my wound will be sealed with staples.  This means that my incision will likely not be as "nice" as it looks now since the last surgery that closed my wound with fancy glue.  Also, the removal of the penrose drain because it fucking hurts and it will be done the day AFTER I'm removed from IV pain meds.  I've never had a gastric tube but I can't imagine the removal of that will be fun.

So what will my life look like when I go home?  A lot of "work".

My first week, and two days before discharge, I will empty my pouch ("intubate") every two hours during waking hours.  I will have to get up at least once in the middle of my sleep to drain.

Second week: Every three waking hours, no nightly draining.

Third week: Every four hours.

You get the point.  By the seventh week, I should only have to intubate every 8 hours.  Three to four times a day will be expected.

In the beginning, my internal pouch will be able to hold 50ccs.  Once it is fully matured, it will be about to hold about 600-1000 ccs (1 quart).

The whole thing, to be quite honest, is mind blowing.  Medicine is mind blowing.  The human body is fascinating.  

So for now, baby steps.  Expect me to post a selfie on popsicle day.  Until then...back to stuffing my face.

Life and Big Changes

Well, it's official.  In 24 days, I will be having surgery in St. Petersburg, Florida at the Continent Ostomy Center at the Palms of Pasadena Hospital.

The surgery itself, called the BCIR, or Barnett Continent Ileostomy Reservoir, is a modified version of a K-pouch, which has been performed for decades as an alternative to an external appliance.  Since my ostomy revision two or three? years ago, I began researching ostomy specialists.  I figured there had to be a surgeon who was well known for creating high functioning stomas (yes, there is a lot that goes into it).  Then I stumbled upon the K-pouch surgery and then the BCIR.

After my stoma revision surgery did not exactly improve my quality of life to the extent I wanted it to, I contacted the Continent Ostomy Center in Florida because they are the most reputable, well known, and well versed in the surgery.  The surgeon there was trained by Dr. Barnett, who modified the K pouch to his own version which improved its functionality.  At the time I initially contacted the hospital in Florida they wanted me to have an IBD diagnostic test done to determine once and for all which type of IBD I have; Crohn's or Colitis.  I ended up ignoring the test simply because I had a lot on my plate at the time between a full-time work and school schedule.

In the last month or two, a whirlwind of circumstances told me that now was the right time to see if I was a candidate for the surgery.  After having the IBD diagnostic test done, I consulted with the surgeon in Florida and a Californian surgeon who is the only other surgeon in the US who performs the BCIR.  They both determined that it was safe to proceed with surgery because the test came back "inconclusive" for IBD.  What this means is that they were more willing to proceed based off the fact that for thirteen years my small bowel has never been diseased.  If you choose to read more about the surgery, you will understand why that is important.

So yes.  On June 2, my boyfriend and I will fly down to Tampa and check into a beachfront hotel on Treasure Island in St. Petersburg, Florida.  The other part of this story is that since the surgery is so specialized I have to spend 21 days in the hospital.  So with that in mind I figured I might as well get a few good days of relaxation before being sliced open.  On June 4th, they will admit me to the hospital so they can administer my bowel prep (yay!) and run other pre-op routine tests.  Friday morning, June 5th, will be my surgery.

It will be a long, difficult, and life adjusting period for me.  The hospital wing I will be residing in for those 21 days is similar to a hotel room and my friends/guests are encouraged to stay overnight for support.  On Sunday my boyfriend has to leave me to travel for work.  After that my mom will come for a week, then my brother, and then my best friend in the whole world, Claire.

Thankfully work has been incredibly supportive.  I have a great network of friends and family.  I have an amazing boyfriend who has kept me laughing and supported me through every step of the process.  I will try to share more on here once I am down in St. Pete.  For now, send good vibes my way!

Prometheus IBD diagnostic

Since my diagnosis over thirteen years ago, my illness has transitioned into a million different labels by specialists and surgeons.  For the most part, doctors assign patients who suffer from Inflammatory Bowel Disease (IBD) as having either Crohn's Disease or Ulcerative Colitis.  It is a necessary simplification of a complex disease.  If you have Crohn's your whole digestive system, from mouth to rectum, is affected.  If you have Ulcerative Colitis, then yay, you're one of the lucky ones!  You only have a disease of your colon and rectum!

In the beginning, my illness presented itself as Ulcerative Colitis and for a while that's what I told people I had.  Unlike its cousin Crohn's, Ulcerative Colitis flare ups appear as continuous inflammation rather than patchy.  From what I can remember mine was always very active in my sigmoid colon.  Bright, red bleeding was one of the first symptoms I had before I even felt sick.  I played a three month field hockey season bleeding every time I shit, but I felt fine, and told myself as soon as the season was over I would address what I already knew was probably IBD. 

It was after my first surgery that a biopsy told me I had Crohn's Colitis.  What this meant was that yes, my small bowel was very healthy, but my large bowel mimicked the symptoms of Crohn's disease.  The inflammation in my colon penetrated to the deepest layers of my intestinal wall and then I soon learned another term to add to my vocabulary: Fistulizing Crohn's Disease.  I cannot go into detail because there is no possible word or phrasing of words to explain them.  Fistulas fucking suck.  Period.

So at my present state, when people ask, I tell them I have Crohn's disease.  If my course of events followed a dictionary definition of Ulcerative Colitis, I would probably still tell most people I have Crohn's and leave it up to them to ask more questions.  People don't know the words "Ulcerative Colitis", they seldom know "Crohn's Disease", but any idiot knows the word "disease". 

There's a lot of reasons for bringing this up.

I've often echoed this sentiment on here before, but you never have any clue what someone else is going through in their life.  I recently reconnected with a friend from high school who was just diagnosed with some serious medical problems.  Nothing life threatening but autoimmune diseases, like mine.  She told me about the trials of trying new medicines only to wait for months before doctors officially deemed their newest attempt as a failure.  She told me how hard it is at work because she feels like people view her as lazy when she's late or has to leave early.  She told me about all of the friends she has lost or cut out of her life.  When you have a chronic illness, you simply have zero time for bullshit, and sometimes that means you keep a tight circle.  Talking to her was like talking to myself at 20.  She participates in message boards, goes to support groups, and reads every possible thing she can about her illnesses.

Another point that prompted this post was that you can see how complicated, how complex, how indescribable, how undefined IBD or any illness can be.  I cannot tell you how many times within the first week or month of a job I've told someone I have Crohn's disease.  Not because I thought they should know, but because they brought up some horrid generalization or blatant misinformation that kept me from being able to keep my mouth shut.  I like to explain it like this; The digestive system makes up the majority of your abdomen.  Intestines are something like 20 feet long (I'm guesstimating) and someone who is symptomatic at foot three of intestine is going to feel a lot different from someone (like me) whose disease was most vicious in my rectum.  Everyone's disease is different, their treatment is different, and what works for one person doesn't always work for another, even in the chance that they do have similar clinical symptoms.

With that being said, right now three vials of blood are on a plane to San Diego where some person in a lab coat is going to do whatever it is they do to tell me once and for all if I have Crohn's disease or Ulcerative Colitis.  I don't know how I am going to feel when I find out because I am healthy presently.  It's important to know only for the fact that if it's determined I have Ulcerative Colitis, then I can move forward with the possibility of, at some point in the near distant future, having continent ileostomy surgery.

I could write so much more, but I'll leave it at that.

Some Boring Updates...

The last month or so has been very low key and quiet.  Work is only now starting to pick up with the anticipation of spring.  I work in construction so the ebb and flow of work follows the change in seasons.  There is a new energy in the air with the first taste of spring.  People are happier and it feels good to go home and eat dinner while it's still light out.  Before you know it, we will all be complaining about the heat again.

About a month ago I contracted a mystery illness that landed me in the hospital for several days.  Although I should have gone way before I actually submitted myself to the fact that I was fucking sick.  I'm so familiar with the hospital routine, with waiting in ERs for hours, with feeling like all you want to do is lay down but instead you have to talk to what seems like a million people before anything finally feels better again.  I resisted and resisted throughout my work week and by day five the boyfriend peeled me off the bed with puke bucket in hand and drove me to the ER.

Doctors never really gave me a definitive diagnosis.  It wasn't Crohn's but there were some Crohn's-like symptoms.  Essentially nothing stayed in my body for more than ten minutes.  So after days of that, I was in bad shape.  What made me feel like I could push through it was that I had no fever and no abdominal pain.  NONE.  Tests at the hospital confirmed that I had neither a virus or bacterial infection, however, those same tests were also showing that I was extremely sick because my white counts were elevated as though I did have an infection.  After one day in the hospital on fluids and antibiotics, I was already itching to get out of there but they kept me a couple of days until all of my levels stabilized.

The worst part of the whole experience was the fact that nurses, doctors, and IV techs had an extremely difficult time administering IV fluids and extracting blood.  Apparently I have a lot of scar tissue in the bend of my arms and other areas where I was frequently prodded in my symptomatic days.  I was going through three or four IVs every night.  They were trying to avoid putting a port in my neck or leg but if they had known how much trouble it would be to administer medicine to me they probably would have done it right away.  Anyway, I left the hospital with a lot of bruises but I felt like a million bucks.  The best part? Knowing that I have amazing health insurance and I don't have to stress about hospital bills and ER copays.

In Crohnsy news (that's what the boyfriend calls it) I am going to have an IBD diagnostic blood test done as soon as I get the clearance from my insurance.  Doctors in the past never really felt like it was necessary because symptoms are ultimately how they base their treatment decisions.  My diagnosis was never really solid and it was always uncertain which type of IBD I had.  However, I am seriously considering some options in the future to determine if I am a candidate for continent ileostomy surgery, which hopefully this test will support.  More to come on that.

One Year

It's been an eventful year for me and quite a while since I have written here.  Recently I reclaimed this domain for a variety of reasons; the most important being that I just wanted everything I have written in the past to be accessible again.  Who knows what kind of information or support someone else may ascertain from my words in the past.  I’ve also just desired something that would force me to write again.  So here I am.

My life right now is healthy in regards to my Crohn’s disease.  In the last year, I moved in with my boyfriend.  At this very time last year, I started an internship at the Free Library of Philadelphia while also working full-time.  In May, I completed my Master’s Degree.  In August, I turned 30, left one job and started a new job, all within the course of one week.  Needless to say, it’s been a year full of change and newness.

In the midst of the chaos, I began to see a psychologist again and a psychiatrist at the recommendation of my primary care physician.  I needed the psychologist simply because I was overwhelmed.  I was graduating with a degree in a field that I was passionate about, but one that I had to accept I would likely not find a job in.  I was desperate to get out of the restaurant industry but I didn’t want to jump at the first thing that came along.  Of course, that’s exactly what I ended up doing.  And you know what?  It worked out for the best.  After working in restaurants throughout college and graduate school, there is nothing better than working for a great company.  I’ve been at my current job for six months now.  I never understood how much of a toll restaurant work had taken on me until I got out.  It’s something you can only understand if you have waited tables.  I now have free health insurance, benefits, structure, a relaxed work environment, a consistent paycheck, holidays off, an occasional happy hour, and a place where I fit in.  You don’t get most of those things when you work for tips.  Granted I absolutely loved every person I worked with, I needed the change.

Ok, back to my point.  After seeing a psychiatrist, some of my mental health medicines were tweaked, and now my sleeping problems have improved drastically.  That has been a relief.  I also think that moving in with my boyfriend helped that out too because I was living alone before.  Additionally, in the opinion of my psychiatrist, I exhibit many symptoms of ADHD, so I am also being treated for that.  It was something I always suspected about myself.  Rather than explain a million things from my childhood and school, I would encourage you to read this article about Lisa Ling. When I read her account of being diagnosed with ADHD, so many of her words reverberated with me.  In the words of my psychiatrist, “I have no idea how you managed to get through graduate school.”  Ummm, ok?  Thanks?  I guess.  Learning this diagnosis days before starting my new job had me panicked.  Would I be able to go from the fast-paced restaurant environment to sitting at a desk 40 hours a day?  With therapy and medicine I have managed well, so far.

The biggest part of this year was definitely moving in with my boyfriend.  Shockingly, the transition was smooth for the both of us.  I think the fact that we are both extremely independent helps.  So does the fact that my boyfriend truly, genuinely, loves to clean.  If I trusted him enough not to shrink my favorite sweater or put the wrong pair of jeans in the dryer, he would happily do my laundry, too (and use fabric softener).  Admittedly, the hardest part of moving in with him initially was my ostomy.  It sucks sometimes.  Having a leak at 4 AM in bed sucks.  The insecurity I feel in those moments suck.  The fact that my boyfriend has to wash the sheets for us while I can change my appliance sucks.  But you know what?  He's the first to come over and plant a kiss on my cheek or do something so ridiculously funny that I cannot help but smile.

In short, that's kind of what's going on now.  New job, good health, stability, and a lot of love.

My best friend...

I feel like the luckiest person in the world to be able to say that I have a best friend who completely changed my life.  Outside of my family and closest friends, that may be hard to understand.  But for the people in my life who understand me most and witness how much she supports me, it is obvious.

My best friend is loud.  She can sometimes be obnoxious.  She doesn’t give a shit what anyone thinks about her.  She challenges me with her liberal viewpoints.  She is beautiful and intelligent and supports every decision I make.  Even when I am traveling down the wrong path she points out my wrongs but is the first to trust that I am one who learns from my mistakes. 

If I had met her when I was younger we would probably not be good friends because I would have judged her as being completely over the top.  But, I met her my first year at Maryland during a period of good health and new beginnings.  When I randomly moved into a house with her, she was the last person I expected I wouldn’t be able to live without.  That opinion quickly changed and from our first one-on-one outing together I knew that she was a person I would forever love.

Throughout our nine-year friendship I have come to understand that my best friend and I are more alike than I ever imagined.  The only difference between us is that she was born with the courage to be, and act, however she wanted.  That’s the greatest gift I have been given from our friendship.  She taught me how to be more compassionate, how to give others the benefit of the doubt, and how to show them the truest version of myself from the start.  I cannot express how much my adoption of this attitude has enhanced my life.  It has made me love others better and take risks courageously.  I can definitively say I am a better person because of it.

I will never forget when I decided to have my ostomy surgery.  Without provocation, she called her father to discuss something she rarely talked to him about before---his ostomy.  She wrote down names of supplies and suppliers and advice on things I could try to improve my quality of life post-surgery.  As if I didn’t already know, it was a moment at the worst time in my life where I knew I would be okay as long as she was there. 

I write this because I have come to realize it’s not just the decisions you are forced to make, such as having surgery, that make you better.  Sometimes it’s simply that you have trusted someone else enough.  You realize that you are along for whatever ride they decide to take because it will be okay as long as they are the one you are riding with.

Recently I was discussing with one of my other good friends that I feared I would never find my soul mate in a lover.  He was quick to respond, “But Ellen, you have Claire.”  And all I could do was walk away because he was right.  I have a best friend who loves, respects, and supports me.  That’s all I could ever need.

Life, now..

I have a chronic illness.

For the rest of my life, I will carry the weight of my struggle with Crohn's disease through every job, every relationship, and every endeavor.  Even when my body is healthy, my mind will always remember the past.  I have an illness that will always make me tired.  I will cautiously tread and wonder if at any second it will become active and I will have to explain to a new set of managers and coworkers that Crohn's disease is serious; that it is not something to be laughed at because it involves shitting and puking.  Each new relationship I will remember the friendships and romantic relationships that failed me before because I was ill.  Each time I embark on a new adventure I will doubt my ability to complete the task.  Even though I am healthy now, I still feel the effects of my illness.  I will never believe in certainty.

I always thought when I was physically healthy my life would be perfect.  But, life is much more difficult than that.  In the past year I started a new job, moved out on my own, ended a relationship, fell in love with someone new, traveled, stressed, had another surgery, and made new friends.  But with each of these accomplishments that wouldn't have been possible without my health, I still wonder what could have been.  It is impossible to squeeze ten years of bad health into two of blissfully good health because it results in nothing but dissatisfaction.  I have to believe there is no timeline for the accomplishments one is supposed to achieve at certain points in their life.

I still struggle with depression which I believe is a result of the residue of Crohn's.  It is a true statement of resilience that when I was deathly ill I never felt seriously depressed, but now that I am living a "normal" life with the effects of illness, I find that I struggle with this problem.  I guess when you are going through hell you find a way to make it through and it's only after the storm has cleared that you have to deal with the aftermath.  That's where I've been for a while now and I am not certain that the recovery effort will ever end.

Don't get me wrong.  I am happy for the most part.  I am healthy.  I have the greatest support system in my friends, family, coworkers, and boyfriend.  But I still hate what Crohn's has done to me.  I have to remind myself of all positive traits it has added to my character that might not have been possible otherwise.  I know it has made me a better person but I am not so certain that the benefits of its lessons have outweighed the damage it has permanently caused.  For now I have to embrace what is in front of me and remind the goodness in my life.

A Canadian journalist named Robert Mason Lee (who I've linked here before) once stated that those afflicted with Crohn's become pain-seeking people.  That they are so accustomed to feeling pain they need to feel it even when it's gone.  I believe his theory but I am tired of feeling pain.  I am ready to be happy and healthy.  I am done with seeking pain because it feels normal.  I am ready to be happy and I have a feeling I am headed there.