7.08.2015

First Day

I survived.

My first day back to work was a success.  After the anxiousness of the attention I would be getting from my reappearance subsided, I was back into my routine.  My bosses informed me right away they wanted me to take a half day today and tomorrow, which I am grateful for.  Some of my coworkers were quite astounded that I was even at work.  And I guess it is kind of incredible.  Who returns to work one month after being cut open and having their whole digestive system flipped upside-down?  I guess in a way I will never, ever overcome the urgency in my bones to GO the second my body feels normal.  I'll always feel the crunch of time no matter how incredible my life accomplishments are.  It's an issue I am always working on.

But, boy, I was glad I listened to them to take a half day.  After waking up super early, loading my body with more caffeine in one hour than its seen in one month, I worked 6 hours, came home and crashed.  HARD.  Sometimes you just HAVE to listen to your work moms when they tell you to take it easy.

The good news is my intubations are getting easier.  I'm learning which drinks help increase my flow which makes intubation effortless.  I still don't have much pain when it's time to intubate so I have to remind myself that I should only be at 4 hours right now otherwise I forget until I start hearing the gurgling in my stomach and fullness.  It's truly the weirdest feeling, but I am told I will get used to discerning which feelings mean I need to intubate.

Just a short update.  More to come. x

7.07.2015

Back to Work and Beginning My New Life with a BCIR

Throughout my hospital stay at the Palms of Pasadena, I had old patients come and visit me.  Many of their parting words, and the parting words of my nurses as I left that last day were, "Enjoy your new life."

Part of enjoying my new life is returning to normalcy.  Tomorrow I go back to work.  I am not scared.  I am excited, anxious, and vainly looking forward to wearing some of my tighter clothes I just couldn't wear at work before.  It still seems surreal to me.  It doesn't feel like a new life yet.

One of the hardest parts about leaving my restaurant world and entering into the nine to five business attire life was learning what clothes I could and could not wear.  It involved a lot of accidents, trial and error.  I had to find leggings or panty-hose that were tight, but not too tight to the point of restricting my stoma from doing it's job.  Needless to say, there were a lot of frustrating leaks over the last year.  I stuck to empire-waisted dresses that allowed me to not use the bathroom constantly throughout the day.  My high waisted pencil skirts similarly followed the same guidelines.  As long as I had my ostomy, I always shopped like my clothes were going to fit with a flat and empty pouch.  Cute, yes; but unrealistic.

Is it wrong that one of the things I am looking forward to tomorrow is wearing this express skirt that I nabbed on clearance for 16 bucks?  I think what I will learn with my new life is that there will be no big moment where I thank goodness for the decision to have this surgery.  I think it's going to be a bunch of these tiny, tight skirt wearing days, that are going to culminate into a much happier ME.  The stress relief of no leakage, no longer waking up in the middle of the night and immediately touching my shirt where my ostomy is to make sure it's okay, not having to think twice about how much I am eating related to the outfit I chose to wear that day.  It's the little, little things.

With that being said, I did have a small set back over the weekend.  My first experience with a common BCIR first year complication called pouchitis.  Pouchitis is essentially inflammation of the lining of your pouch.  It's extremely common but luckily treatable.  Immediately after I started my antibiotics I felt better.  However, before then, it was a few days of misery before I finally called my doctor over the holiday weekend.

It will continue to be a learning process over the next year as my new pouch matures and the rest of my small intestine adjusts to the change in its role.  I sometimes have to stop and remind myself of that.  I just had a huge surgery.  There will be growing pains and nothing is perfect.

For now I am very happy, as I am sleeping through the night and am able to stretch 6-8 hours between intubation.  I might not feel like I have a new life yet, but I think returning to work tomorrow is a huge step in discovering what is ahead.

Hope you are all well and had a fabulous holiday weekend. x.


6.28.2015

Post-BCIR surgery updates

I arrived home this Friday, the 26th, after a long day of travel.  I intended to write and update on here throughout my hospital stay but I wasn't feeling motivated and the pain medicine made it difficult to concentrate on reading or writing.

The most important message to pass along is that my surgery was a success.  I went into surgery projecting positive vibes but I also had to prepare myself, emotionally, for the disappointment of the unknown.  What if they opened me up and there wasn't enough small bowel left to create my internal pouch?  What if the pouch failed after a few days?  What if...

I will not lie.  This was the hardest and most painful surgery I have ever recovered from.  The difficulty was only heightened by the fact that I was so far from home and knew I had a 21 day hospital stay in front of me.  It took a few days for my pain to be managed properly after tweaking my meds.  For some reason I didn't really consider how difficult my recovery would be.  I just assumed whatever was ahead of me was surmountable because of all the shit I've been through in the past.  There were a lot of tears for the first half of my stay.

For the most part, my recovery followed closely to the schedule I posted last time.  Because I was having surgery in an unknown hospital with a surgeon I barely knew, my first impression was critical.  I knew right away that once I met my medical team that my fears would have either heightened or been placated.  Thankfully it was the latter.  I cannot verbalize how comfortable the team at Palms of Pasadena made me feel.  Because they have a whole continent ostomy center within the hospital, their nurses knew their shit.  I've had experiences in the past where nurses were uncomfortable handling my ileostomy.  At Palms, the professionalism and expertise were felt from the second I walked into my hospital room and began to unpack.

I don't think everything has actually sunk in yet.  It's weird not to have my ostomy there.  I find myself touching my stomach habitually when I stand up.  The freedom I have now is incredible.  Wearing clothes is better, sleep is better, food is better.  There are things in my closet I haven't worn in years that I am looking forward to wearing simply because I CAN.  I don't have to wear tank tops under everything and I can wear tight shirts without worrying about how much I ate that day.

I am still in the beginning phase of recovery but from the former BCIR patients I met at the hospital and the little taste of life I've had in the past several weeks, I cannot wait for what is ahead.  I keep looking at my imperfect stomach and each healing incision reminds me of how lucky I am.

I hope to continue to share my journey of recovery here.  Unfortunately my eloquence is lacking right now as I am still on some heavy duty pain meds.  Until next time...Cheers!

5.25.2015

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.

5.12.2015

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!


3.26.2015

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.

3.12.2015

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.