Fifteen

Fifteen years ago today, at just seventeen, I was diagnosed with Inflammatory Bowel Disease.

It is hard to believe, at thirty-two now, that I have spent almost half of my life enduring the ups and downs of this horrid illness.  The symptoms I experience now are merely part of my every day life.  I have accepted them into my daily routine.  But I cannot imagine how I coped as a seventeen year old How the hell did I even become a successful adult, I often wonder?  

I have memories of being sick, of course.   They are memories of days when I lived in diapers and survived off steroids.  I can remember these times, but it is the small moments; the in between and random selection of memory that fills me with a paradox of sadness and joy.  The joy surmounts because I’ve come So. Fucking. Far.  No matter how much distance fills the space between me now and me then, I cannot help but feel emotion; an emotion I suppose no one else can relate to who has never been as low as I was during the first year with Crohn’s.

I remember dropping to 95 pounds.  I can still see myself staring at my reflection in my parent’s hallway mirror, wearing a pair of shorts that I would never be able to fit myself into again and a Cliff Lee T Shirt.  I still have that t shirt.   It doesn’t fit in the same way now, but I still wear it.  I went downstairs and cried into my dads shoulders and he told me for the first of many times that Crohn’s would not define my life.

My sister would take me for car rides.  We would go and see my brothers softball team play, and this was the one instance every month where I would socialize.  Unbeknownst to every one of my brother and my friends, my bony body was able to hide that I was wearing a diaper underneath my clothes, and that diaper was the only thing allowing me to leave the house.  In retrospect, maybe they knew but didn’t say anything.  I lived for those spring and summer nights watching my brother play softball.

I remember when Comcast came to install cable because my whole life we didn’t have cable but my mom (hi mom!) decided we could have cable because I was sick and I had nothing else to keep my time occupied.  I remember sitting on the love seat of my parents sofa and watching the techinican install our cable.  I remember my mom went to Dunkin Donuts and got me a bagel.  I ate two bites before I felt sick.

I remember my high school friends coming to visit; not quite understanding why I couldn’t come to school but understanding that I was sick.  Jess brought her dog; Anne brought food.  I was glad they came, and wanted them to leave all at the same time.

I remember going to my high school graduation after my mom fed me 5 MG of percoset, the only time I would ever take a pain pill in the history of my struggle with Crohn’s.  My sister and Ryan gave me a Tiffany bracelet with an American flag.  I remember Mrs. Johnson giving me the tightest hug when she saw me at graduation, and for a moment, this teacher whom I didn’t even realized knew who I was, she understood how much it meant for me to be walking at graduation.  We went out to eat as a family together afterwards and I remember bursting into tears because I was on steroids and quite frankly, out of my damn mind. 

I remember my college roommates, each one of them with the responsibility of driving me to the hospital after a bowel obstruction at some point in our college journey.  Jill went to the cafeteria but was afraid to eat hospital pizza in front of me.  Natalie demanded the nurses give me pain meds, and Claire took me for a walk at the UMMC and we made small talk with the orderlies.  My best friends; famished, delirious and missing valuable studying for finals; all they could think about was me. Until recently I had written the narrative in my head that Natalie had failed her final because of me.  She was sure to correct me.  She didn’t fail her final, but she barely passed. How can I not feel like the luckiest person in the world for having these people in my life?

I remember the posts of this blog I shared with boyfriends who I decided were worthy of knowing  “the truth”.  I still remember the first post I shared with Jamie.  I sent him an email after a date of ours should have turned romantic that included a discription of my ostomy.  He texted me the next day, all day, like nothing was wrong and I feared that he hadn’t yet read his email.  When I asked him if he did he said “of course, it was the first thing I read this morning”.

I’ve been blessed, throughout this curse.  My struggle will never, ever end, no matter how magically I paint my life to be on the canvas that is this blog.

But, I’m just like any other 32 year old with hardships.  My struggles just happen to be in the form of a missing colon and tiny hole at the bottom of my abdomen that has given me life.

Here’s to a happy, healthy, and surgery-free 2017.  Cheers!

One Year Post-Op

Today marks my one year BCIR anniversary.

I am so happy I made the decision to have surgery.  I trusted my instinct.  I researched.  The decision was years in the making, but the timing was finally right one year ago.

I have no regrets.  My quality of life is drastically different and improved.  I don't have to worry about waking up with a leak at 3 in the morning, showering, and stripping my sheets.  I can roll over with a stomach full of gas.  I no longer profusely press on my stomach where my stoma was to make sure my appliance is still intact.  I can manage most days with 2-3 intubations, depending on what I've eaten.  Most days I leave for work at 6:30 am and do not intubate until I get home at 5.  It's incredible.

But, nothing is perfect.  I still suffer from chronic pouchitis, although it is controlled with a maintenance dose of antibiotics.  Pouchitis is a common post-operative "complication" and the more my pouch (the reservoir that stores my waste internally) matures, the more my risk for pouchitis should decrease.  Again, not ideal, but manageable.  It's usually my own fault when I have issues because I've missed a dose of medicine, but within days I am back to normal.  My only other selfish complaint is that my diet is actually more restrictive now.  Imagine everything you eat having to eventually pass out of a catheter.  When they told me in the hospital that my new motto was "chew, chew, chew, drink, drink, drink" they were NOT kidding.  These are surface issues and by no means do I struggle with either, but they are minor annoyances.

I could go on and on...

If you have read or followed my blog, you know that I am fairly resilient.  So while this surgery has been the greatest risk I've ever taken in my life, it also feels like this is how it's been my whole life.  I'd like to think that it's not for a lack of gratitude, but for the knowledge I've always had in myself that I would be okay regardless of having a traditional ostomy or not.

If I have learned anything this last year through my experience with the BCIR, it's that you should trust your instincts.  Once I was approved for this surgery, it became my number one goal.  I researched and prepared myself, and for those reasons I knew everything would turn out okay.

TRUST YOUR GUT.  And surround yourself with people who love you, respect you, and support your decisions.

PRESENT DAY.  You can see the small bandage below my
waist line that covers my new "stoma".  I change the bandage
twice a day.  Because I have an opening in my stomach
I still experience output in the form of mucous.
Despite how horrific this looks, my surgeon actually did an
INCREDIBLE job fixing my midline incision.  Looking at this
photo head on, you can barely see on the left where my ileostomy
was before I had it placed on the right side.  Hopefully over
the next few years that scar will fade as well.  Some of the
other small red marks are just from sitting, but you can see a couple
other small holes where my stomach tube and drains were.

CIRCA 2014?  Ileostomy life.  That's with an empty bag, so you can only imagine how much an ostomy has the capacity to protrude and become annoying.  This picture isn't great but you can also kinda see how my midline incision gave my stomach the look of a butt.  Very thankful Dr. Rehnke was able to tighten up my midline incision as much as possible.  

XOXO

My 2015 Recap

Okay.  I haven't been posting.  I'd like to say that's because everything has been fabulous health-wise. Although partially true, I've hit some bumps on the road.  It is expected for the first year after BCIR surgery to be a period of adjustment.  After all, my ileum is now serving a completely different purpose than it did its other 30 years of existence in my body.  But the important part is that I do not regret, AT ALL, my decision to have surgery.  It has completely changed my life for the better in ways unimaginable.

The biggest hiccup has been my chronic pouchitis.  I found an awesome GI in my home territory and she's been great about educating herself on my unique anatomy.  I had my first post-op colonoscopy with her (which is actually called an ileoscope when you have no colon) and everything went GREAT.  I am still waiting on the results of my biopsies but she was amazed at my anatomy and how healthy everything looked.  She was also able to look into my small intestine which was always a challenge before because my doctors couldn't navigate the rest of my tract without endangering my intestines.  I woke up after the scope and one of my caretakers who was in the room during my procedure was asking me a million questions.  How do you know when you need to "go"?  What does it feel like?  Etc.  It was a pretty great feeling to know that my insides looked healthy because I think my doctor was expecting to see something crazy in there.  Even for medical professionals, I think it's hard for them to grasp that something atypical can, in fact, be legitimate and a far better option.

Anyway, my pouchitis has been under control with antibiotics but I haven't been able to completely wean off of them since surgery.  Obviously no one wants to be on antibiotics for a long period of time so my new doctor prescribed Entyvio which I started in the beginning of November.  It can take up to 12 weeks to become therapeutic so right now I am in one of those waiting periods.  It really brings me back to the feeling and emotions that these waiting periods used to produce back in the days when I was really sick.  It's a completely different sentiment this time.  There really is no urgency to find out if Entyvio will "work" for me because my pouchitis is under control with the antibiotics.  So the next month or so will definitely be a telling time where we will figure out what the next move is, if I cannot completely wean off of antibiotics.  After seeing how healthy my insides looked, my new GI is definitely more receptive to keeping me on a long-term antibiotic regimen.

For anyone who has been wondering what I've been up to--Rather than spew everything that's happened in the last year, here is my 2015 recap, abbreviated:

I had BCIR surgery.  Game changer.
The bf and I traveled, went to weddings, spent a lot of time with family.
I got a substantial promotion at work, finally feel settled in my career, and I'm lucky to be with a company that is growing.
My sister popped out another boy.  And I'm obsessed, duh.
I discovered that me and my best friend Claire are allergic to snuggle and those nasty rashes I was getting were not, in fact, Crohn's (you may be laughing but it was a pretty serious problem for a few months)

Well, isn't life just thrilling...

-xo

Pouchitis, Cipro, and the BCIR

All is going well.  Really.

Considering everything my body has been through, and the fact that my small intestine is now serving a completely different purpose than science designated it to; I am happy.  I can't believe it's only been four months since surgery.  FOUR.  It's incredible.  Life is incredible.  And science and medicine are mind-boggling.

The only hiccup in the road has been the onset of pouchitis, almost immediately after I got home from Palms.  Pouchitis is a common infection that is extremely treatable with antibiotics.  Thank God.  It's actually quiet unusual for someone with Crohn's to feel an immediate, drastic improvement just from popping one of medicines' oldest tricks in the book.  With Crohn's, you're used to feeling months of misery, complete with trial and error.  Mostly error.

Pouchitis, quite simply, is inflammation of the lining of your pouch.  For me, this is the internal reservoir that was created when I had the BCIR.  It's something the nurses and doctors prepared me for.  The first year after surgery it is quite common and I have developed a chronic case of pouchitis that will require me to remain on a therapeutic level of antibiotics for the time being.  I've heard about pouchitis for years and have come to terms with the varying degrees of it.  People with the K Pouch and J Pouch often experience it as well.  For me the pouchitis merely causes more cramping than usual.  I get more prone to dehydration because I am intubating five times a day instead of two. The weirdest part of pouchitis is that (for me) it is NOTHING in comparison to what I thought it would be.  Regardless of my access to a bathroom, I can endure the ebb and flow of the cramps until I am able to get to one.  My tiny, pencil thin stoma, if you can even call it that, remains continent.  I have to change my dressing more frequently but the fluid it excretes is merely fluid.  It is not stool, it is just mucous that develops because my pouch is contracting more than usual.  After a few days on antibiotics, I was completely back to normal.  Since then we tried to wean my dosage but were unsuccessful.  So I had a few days of cramping until the full dosage kicked back in.

And then, several weeks ago at work, I began to have a rapid progression of hives forming on my arms.  I was ignoring tiny red spots that were appearing for the weeks prior because they went away hours after they appeared.  But these ones were getting bigger, redder, itchier, and uglier by the minute.  I admit I freaked out a little bit and I am sure it was not helped by my coworkers freaking out for me.  Anyway, I suspected that my body was rejecting the Cipro, which is common with long-term use and that fact was confirmed once my doctor returned my call.  They switched me to Flagyl which took a bit longer to "work" for me so I had about a week of discomfort before I felt well again.

In the end, I got quite a bit of sympathy at work.  I laid down in an office while I waited for my doctor to return my call.  I have an extremely supportive and laid-back office environment and after taking two benadryl my coworkers let me fall asleep until someone came at 5:30 to wake me up because it was time to go home.  In the end, I was a little bit embarrassed.  But I will take the embarrassment of hives and falling asleep on my bosses couch over shitting myself any day.  A few pictures below will give you an idea of what I was dealing with.

Ignoring these symptoms the week before (Mom, you were right):

 Down for the count:

Later that day: The Swollen Colon rash-covered arm:

xoxo

BCIR and Swimming and Being Alive

Something amazing happened a couple of weeks ago.

I went swimming.  In the ocean.  For the first time in...I can't remember.  My bff Anne is probably the last person who saw me in a Swimsuit circa 2000.  It's really been that long.

The backstory is that the boyfriend and I traveled to Maine to see one of his best friends get married.  It just happened that my family and his were both staying in the same town at the Jersey shore so once we left Maine we headed to Jersey.  I wasn't too enthusiastic about it but it ended up being a great time.  It was the first time in my life I could take a vacation that was paid for and I didn't have to worry about losing money from not working.

In my adult life I have never been a beach person.  I hate the sun, the sunburn that results from being pale and Irish, and the sand.  But one day on our vacation, I found myself thigh-deep in water with waves crashing on me while I watched my nephews being held by my brother in law.  After a while I said to myself, "fuck it".  Of course I didn't have a bathing suit but I didn't care.  I was already soaked.  I walked back to the beach where my family was stationed, ripped off the bandage covering my new, verrrry small stoma, and talked my brother into joining me in the water.

This is not to say I couldn't go swimming before.  Honestly, I never really attempted it.  I think I just convinced myself I didn't like the beach as a way to cope with my reality.  In the years with my ostomy, I certainly took baths and I knew I could find bathing suits that worked with me, but I just never shopped for them.  If I went to the beach I went in a tank and shorts and read or people-watched.

But that day, several weeks ago now, I swam in the ocean with my brother for an hour.  I watched my nephews as they were crushed with waves.  I watched my mom on the shoreline beaming with a wide smile as she took pictures of me....swimming.  My boyfriend (who spent his day golfing) was dumbfounded when I texted him after hours on the beach telling him that I was still there.  And that I went swimming.

Sometimes I feel guilty with my "new" life, because I would have been fine spending the rest of my life with an ostomy---really.  But there is a sense of freedom I never thought imaginable; one that has made me certain I made the right decision.  I could not imagine life another way.

I suppose I need to find a bathing suit for next season.  Until then...

xoxo

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

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!

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.

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.

Surgery Day

Surgery scheduled for Friday, December 14th...for anyone who still reads this thing.

I had an interaction with my professor this week that I'm compelled to share.

I had to provide a doctors note for missing class once during the semester.  It was an ostomy-related issue and probably my own fault for not accepting that I need to carry extra supplies on me at all times right now.  Anyway, I missed class and got a note from my surgeon, which I provided to my professor who has a reputation for being an asshole when people miss class.

So I took my final on Thursday.  I was the first one done and my professor followed me out the door and asked me how I was feeling.  He asked me what I was having surgery for, and I vaguely gave him a Crohn's-related explanation.  Keep in mind my doctors note was from the U of Penn colon and rectal surgery office, so I'm sure my professor had a loose idea of my issues.  He then offered me an extension on my paper, which I declined but thanked him for.  Then he told me that he had a large portion of his bowel removed once and still has an ostomy.  I didn't share my own ostomy story with him but I emphasized my sympathy for him and he told me about one of his undergraduate students who was going through a rough time with Crohn's right now, too.

The point of my story is that you never know what anyone is going through.  I try to live my life consciously aware of this fact anytime I am confronted with someone whose negativity bothers me.  You just never know what's going on behind closed doors, what kind of struggles people are battling, or why their behavior is the way it is. 

Just a little something to think about.  

Oh, surgery...

Today I got my abdomen marked with a pretty purple marker.  I saw the wound and ostomy nurse at the University of Penn.  My surgeon came to the conclusion at my last appointment that the current site of my stoma is too damaged to simply recreate another stoma there, so I have to have it moved to the other side of my belly.  This is the part of my last appointment that upset me so much.  I had no idea that this would be done and I would need another hospital stay, another semi-major surgery.

The appointment today was to decide where exactly I wanted the new stoma to be.  I decided to essentially keep it in the same location but on the opposite side.  Its placement right now has worked perfectly with the styles of clothes I wear and other factors.  The nurse marked multiple places and had me move around a bit just to make sure the new site wasn't in an awkward place in a fat fold or something (yeah, I know I'm skinny but I still have those).  Once we decided on a place she marked the it with a pen and placed a clear skin over it to preserve the marking until surgery.  This is a practice that should have been done the first time I had surgery, but that option was never presented to me.  It wouldn't have made much of a difference, however, it's just another little factor that bothers me in hindsight.  In addition to my surgeon telling me that they should have adjusted my stoma from a loop ileostomy to an end ileostomy when they completely removed my colon, I've been feeling quite angry.

The past few weeks have obviously been challenging.  I've been struggling with a lot of decision-making.  This is the first time I can say that I am electing to have surgery to improve my quality of life.  I know I always had surgery for this reason before, but this time it's different.  This time I am trying to bring myself from a healthy state to a state that will allow me to not only be healthy, but eliminate the stress and anxiety that stems from constantly worrying about leaks.  It's difficult to process.  If other people had to deal with what I am dealing with now they would be in a mental institution (as my mom phrases it). But for me, I find myself questioning why am I putting myself through this when it's completely needed, but it's not something that's keeping me from living my life every day.  I don't know if that's possible for other people to understand but it's the best I can explain.  I know it needs to be addressed but it's hard when the decision isn't accompanying physical pain.  Another factor I am questioning is that I basically called Penn and scheduled surgery with the first person who had appointments available.  Obviously they hooked me up with a young surgeon who probably doesn't have much experience.  I worry about this but I also think about the fact that very renowned and experienced doctors have failed me in the past, so I just have to act on my impulse that I felt comfortable with each of our meetings.

Anyway, through the midst of all of this I came to the conclusion that I needed to take the whole month of December off of work to ensure I finish up my semester as stress free as possible.  Friday is my last shift at work.  Then I have a lot of presentations and my final papers due the 11th.  I won't actually schedule my surgery until my appointment again on the 6th but I was assured that I would be able to be operated on the second or third week of December. Luckily I am in a good financial state with supportive family, friends, and bosses, so I can take as much time as I need to heal.  It just sucks.  That's the only phrase that can summarize everything.  It fucking sucks.

Now I just have to keep this purple dot preserved for the next two weeks. Guess I gotta keep the showers brisk...

Life and Ostomy Revision...

I didn't update for so long and now here I am updating twice in the span of a week.

I realized how fast the end of the year was coming and it motivated me to make an appointment to schedule surgery.  The thing about chronic illness is that you will have days that are perfect and for a second you think that everything is fine.  No matter how bad the bad days are, once you have a few good days linked together it seems to make you forget about all of the suffering, no matter how bad it was. Especially now that I am relatively healthy.  I seemed to overlook the little annoyances about my ostomy situation that filled my life with anxiety in the past couple of months just because they were nothing in comparison to what I have been through. But I realized recently that my life was again becoming abnormal in a different way, and I needed to address it for my mental and physical health.

I saw a new surgeon today at the University of Penn and it was an extremely emotional, difficult day.  I guess I didn't expect that I would need a surgery that would completely reopen me.  Because of how terrible my current ostomy is, they need to move it to the other side of my abdomen.  The first thing I thought of was that I'll have more scars and another adjustment to make in terms of how to manage my ostomy in general.  I'll also need at least a month to recover because of how extensive the surgery is.  Needless to say, considering I am healthy in terms of my disease, it was quite a shock to hear that I would need another big surgery to fix a seemingly minor problem.  The more I think about it though, the more I understand that I have made huge adjustments to deal with this "minor" problem just because it was preferable to anything I've experienced prior.  I'm just upset that the little normalcy in my life and relationships is being challenged, again.

I think the most frustrating part of it all is that I have always sought out the best doctors and surgeons.  When I started having problems with Crohn's I went to the closest GI but I was then referred to a "specialist".  From there I trusted someone to tell me who to see at one of the best hospitals in the country for dealing with my type of bowel disease.  While I still love the doctor I saw at the U of Maryland, after seeing the surgeon at Penn, I understand that no one listened to me as much as they should have.  That brings forth new feelings of doubt, feelings like I should have done more to press for what I thought I needed.  It makes me feel like I wouldn't have an ostomy if I had just pressured doctors more to do things differently.  But who am I to tell someone with a medical degree how they should treat me?  It just sucks to feel helpless.  It sucks that I have to have another surgery because in the opinion of my new surgeon, someone fucked up along the way.

None of my present problems can ever compare to what it felt like to be sick with Crohn's.  But I will never stop wondering what I could have done differently, especially now that it's being pointed out to me that my disease and surgeries weren't managed as well as they could have been.

I think about another Christmas spent recovering from surgery.  I think about the fact that most of the new people in my life won't really know why I am having surgery.  I think about how far I have come in accepting myself and feeling confident even though I am different.  I think about how much I miss my best friends who aren't in Philly to support me with their presence.  I know it could be worse and I am grateful for the health I do have.  I just wish that right now it could be different.

Still Alive

Okay.  So I know I haven't updated in a very long time.  There were a couple of occasions where I felt like I could have said something but the past several months were marked with such unpredictability I couldn't say precisely where my life was headed.  Then I realized that I will never know for sure and that's exactly what my life is allowed to be at this moment.

When I say that a lot has happened in the last several months, it's an understatement.  I left a job I was extremely secure at and found a new job in downtown Philly.  I moved out on my own to an apartment not far from my work and began a new chapter in my life.  A new volume, perhaps.

It was a more difficult adjustment than I imagined to live completely on my own. I am lucky enough to be financially secure, but I wasn't prepared emotionally for what that type of drastic change would bring.  I felt like a million things happened at once and it was overwhelming, but I got through it. I am still getting through it.  I am working full-time, living on my own, paying my own bills, going to school full time, and still dealing with chronic illness. The truth is, no matter how healthy I am, I will always deal with Crohn's.  That will never change.

I should mention the small problems I've had with my ostomy.  I've been having a lotttttt of issues with my stoma and saw a surgeon at the University of Penn last month.  He recommended I make some changes, which I did, with little positive result.  I've basically been complaining about my stoma since I first had surgery in 2009 and none of my doctors have ever listened to me.  I was actually shocked that the surgeon at Penn looked at it and agreed, basically telling me, "They set you up for failure with this".  I could go into detail about what a stoma should look like and how it functions, but it's not important.  Many surgeons are reluctant to make such a minor operation to correct the mistake of another doctor, so it was impressive that he listened and sympathized with me. In his words, I have to live with this the rest of my life so I might as well have a stoma that functions exactly the way it should.  The next step will be to schedule a minor outpatient surgery in December or January when I am on break from school.  It's not a big deal at all and it won't require a huge recovery time like past surgeries.  

Otherwise, the last time I posted I talked about how I came off my anti-depressant, but recently I went back on another form.  It was hard to admit to myself that I still needed medicine, but I've been better since I started back on it and while I know it is not a permanent situation, it's what I need for right now.  I'm okay with that.  I went through so much to get my body healthy, it would be shameful to let my pride stand in the way of keeping my mind just as secure.  I know a lot of it has to do with the ostomy issues and feeling like I lost control again in the same way I was when I was really sick.  So I'm looking forward to getting all of this straightened out.

I think I also realized how active I need to keep my mind.  I took the summer off from school and felt like I made a lot of bad decisions in that time because I had too much idleness that I couldn't bear.  I need the structure of school, the discipline, the mental stimulation, and the tremendous challenges each of my courses brings.  While it's stressful, it's also what makes me tick.  I love learning.  I love being challenged.  And I love that every time I leave class I feel like I am a better person because of the knowledge I've gained.  Through school I've also become more confident in myself.  Throughout every job I've ever had, other people always believed in me more than I believed in myself.  Now that I am in a truly competitive academic environment, I understand how much this is true.  I am learning to accept the praise that accompanies my hard work.

Perhaps the most difficult lesson of the past year has been understanding that healthiness doesn't equate to happiness.  I always thought once that part of my life was restored then everything else would fall into place.  But life is a lot more work than that. And I'm willing to work my ass off for my piece of happiness.

Till next time...

My Latest Milestone

It's been about a month since I have been completely off medication.  This is the first time I can say that since 2001.  Naturally this is a huge milestone for me, albeit a frightening one.

I haven't been on Crohn's meds in a while but over winter break from school I knew it was time to wean off my anti-depressant.  I know that I do not suffer from chronic depression and mine was merely situational, but it was still a scary thought to finally rid myself of that last medicine, because I know how much it helped me.

I admit that coming off this anti-depressant was hard but I am not sure it could ever be easy.  I lingered on my lowest dosage for weeks and when I finally went to the doctor he told me I should just stop taking it.  It was a weird thought for me to go to bed that night without taking medicine.  Maybe I invest way too much thought into these simple routines but it was hard to let go of that last crutch.  Even though the amount I was taking for the past few weeks was likely having little effect, it was a big moment for me.

I began taking an anti-depressant almost two years ago after I started seeing a psychologist.  Even when I started taking it I wasn't sure I actually needed it, although friends and family members assured me it made a difference.  I am still not quite sure of the extent of its impact.  When I started taking it my circumstances were far from anything resembling "normal" so it is difficult to assess the exact affect it had.  What I do know is that it leveled my moods.  I stopped randomly crying in my car.  I no longer went from high to low in a matter of minutes.  This part of my emotional well-being I can say it improved definitively.

But, I also know that I needed someone to talk to as well.  I know that it was a combination of therapy, medicine, and my resiliency that healed me.  No one of these things can be isolated as the sole reason I am sitting here today managing a full-time job, pursuing an education, and maintaining a social life.

Sometimes in the past year I felt like my anti-depressant use kept me from crying.  I felt like I was supposed to cry more than I did.  Maybe I had gotten so used to crying that I expected it was a normal part of life and something I would do when I experienced great sadness.  When something really bad happened I often thought, "I should be crying.  I want to cry."  But then I had a conversation with a friend recently who reminded me that I was never someone to wear my emotions on my sleeve in the past.  And since being off medicine in the past month I've realized this is true.  The only reason I cried so much before was because of my illness and it is completely okay that I can greet stress and hurt now without tears.

And yet, while I am aware of these things, I cannot help but be afraid of the possibility that I am not as happy as I think I am.  I tend to over analyze every moment of anger and attribute it to the fact that maybe I do need to be back on medicine.  This is just a fear that I need to debunk in time and I have a feeling once I get through this next semester of school I will be completely comfortable being med-free.

Otherwise, life is great.  Stressful, busy, and crazy at times.  But I wouldn't trade a minute of it.

2012 thus far

The New Year has come and gone.

I celebrated important milestones in the month of January, notably my one year surgery anniversary and the ten year anniversary of the day I was diagnosed with Crohns.  This staggering momento did not make me sad like it sometimes did in the past, but it just reminded me that I am healthy, I am alive, and I will be okay.

I will not say it was all smiles and happiness as 2012 came.  I was fortunate to be gifted with visits to some of my closest friends when they were on the east coast for the holidays and I had the freedom of expendable time to reconnect.  However, there is always something bittersweet about being surrounded by people that you love.  It’s like being in college when you were a little homesick and you looked forward to seeing your family but it was almost worse when you went back to school because the memory of the comforts of home were fresh and easily recalled.   That’s exactly how I felt towards the latter part of January when the reality of returning to school approached and I realized I would spend the next few months completely immersed in classes, all without the luxury of having close friends nearby.

In addition to all of this, one of my childhood friends lost his sister suddenly and it really started turning the wheels in my head.  I thought about a friend I lost four years ago who was the same age I am now.  These tragedies can’t help but make me think about time, purpose, and action.  We have so little time to determine how exactly we are going to occupy our lives and it is all dependent on being fearless.  I suppose we all draw on the relative tragedies in our lives as motivation to make the best of everything.  I guess that’s what the last year of my life has shown.

I don’t know what this year will bring but I know I will live it being as bold as reason will allow.  There are things I have thought about doing in the past that I thought were too big for me to attempt, however, I now truly believe that regret is worse than failure.  When you know someone who loses their life at a young age, you cannot believe anything else.

My hope is to continue to surround myself with positive, happy people.  I hope by this time next year I have an event-filled year to reflect on just as I did this year.  While I hope for these things I know I will have successes to take pride in simply because I have the attitude necessary to make positive change happen.  If I’m lucky, I might even inspire someone else.

Cheers.

A Year

Anyone who knows me or has read what I have written on here the past year knows that 2011 was the happiest year of my life.

I discovered something important about myself this year that I wasn't confident enough to believe before.  I discovered that my happiness can inspire other people; that I have an incredible control over my life simply by choosing to embrace every day like the great, precious gift that it is.  It humbled me to see family and friends over the holidays who expressed how much they admired my strength and I am not sure I will ever get tired of the feeling I get when I hear such words.  And I certainly don't think they realize how much I draw on their sentiments when I'm not feeling so strong.  This year I also learned that the stakes are much higher in a life of happiness and healthiness.  I have the ability to invest myself completely in everything I do from relationships to school.  The consequence of climbing high is that the fall hurts a lot more.  But, it is a hurt I embrace.

This year I started a new job I absolutely love.  I met some amazing people and dated some not so amazing guys.  I had a major life changing surgery.  I listened to good music and went to concerts.  I watched my best friend get married.  I traveled and went on vacations.  I watched my nephew take his first step.  I started graduate school.  Most importantly, I was healthy.

I think the biggest revelation of this year was that I have people in my life who fill me with so much love and happiness it makes me want to be a better person simply because I feel like I owe them that in return. These relationships are the reason I am strong.

It feels good to reflect on a year and definitively say that I became a better, happier version of myself.  I don't know that every year from now on will be as action-filled because I am not sure that is even possible.  But, I do know that I have control over my happiness now and regardless of the bad experiences that may come, not only will I be able to overcome them but I will become better in the process.

Here's to another year of the same health and happiness.

I won't settle, and neither should you

I'm sure it comes as no surprise that I am continuing to learn and grow with each day, week, and month that passes.  It might seem redundant at this point that I find something new to analyze because of my changing perspective.  In the past several months I learned a valuable lesson; I don't have to settle.  I mean this in every aspect of my life.  From this point forward, I am making a conscious effort not to settle.  I have been through too much shit to be content with mediocrity.

I think part of me assumed the first boy I met who I really liked, who could look me in the eye and tell me I was beautiful, that my ostomy didn't matter--somehow I thought that would be all I needed.  I thought if this one part of me was accepted then automatically that person must, by default, possess all of the other qualities I could ever possibly want in someone else.  Needless to say, I was off.

I'm not saying that in this particular instance I completely settled but I definitely overlooked major red flags because I felt like someone "got it" to an extent I wouldn't find elsewhere.  After years of having my health as a huge strain on every relationship in my life, I am not entirely disappointed in myself for this oversight.  I get it.  I understand why I was so content.

As hard as it is, I try to think of my own baggage on the same level as anyone else's hang-ups.  We all have issues that make being in a relationship challenging and scary.  But when it comes down to it, I am unusual.  I have no template to follow or friends to consult with who are in the same situation.  I just have to go with the flow and it's never the same each time around.  I think that part is the hardest.  The fact that it is never the same from person to person and it requires me to be on edge at the beginning of any relationship because I am trying to feel the other person out.

Sometimes the conversation comes easy and other times it's hard.  I have learned that easy doesn't always mean that the relationship is meant to be.  And sometimes it's simply harder because the stakes are higher.

Hard or easy, I am going to keep putting myself out there.  I don't have to settle just because I feel like I will never find someone.  If the past year is any indicator, I know that people are genuinely accepting, open-minded, and willing to learn.  In short, I am putting an end to settling.  So should you.

I Might Be Getting Old...

I am always intrigued to see the various search terms people use to find my blog.  It makes me feel good to know that my intent is coming through as randoms search the web and stumble upon my writing.  Sometimes the phrases people search are sad because I can imagine exactly what the person on the other end is feeling.  I have been there.  I have combed the web in times of desperation to research a drug or to find someone else who, at some point, felt what I was feeling and chose to put it out there for others to read.

That's just something random I was thinking about today.

Otherwise, life has been good (surprise!).  I had a few days last week where I physically felt run down to the point where I laid in bed for a few days and felt worry that I might be depressed or getting sick (in a non-Crohn's context) but this week I have felt back to normal with the exception of realizing that I am getting old.

Now, I don't mean "old" in the sense that I feel the crunch of my age creeping to my late twenties.  But I just can't hang like I used to.  What happened to the days of staying out way too late and drinking wine without hangovers?  I want those days back!  I might sound like an idiot for complaining about this but I now have to plan my social life around work and school, keeping in mind that I no longer have the ability to be productive unless I get a good night of (sober) sleep.

I guess it all just reinforces how lucky and happy and blessed I feel right now.  Youth is incredibly fleeting and it is to be spent living in a manner in which one day you can feel you have little regret about the past.  I can't imagine if I had spent any more time living the way I was just because I was scared about what my life would entail post-surgery.  I don't know why I have been wired this way--to be able to adapt and remain resilient--but I feel fortunate that I am and that thought is never far from my mind.

Otherwise, as you know from what I have been writing, the past couple of months have supplied me with endless experiences of reflection and learning.  I am adapting well to the changes in my life; my body, school, work, boys---all while knowing that each pang of stress and worry is only moving me closer to my goals.  I can't say it enough but I just feel damn good right now.  Hope you all do, too.

Letting Go and Moving On

A very frightening thing happened this past week. I had my last visit to my psychologist.

It has been almost two years since I started seeing a therapist. At first it was on a weekly basis, then bi-weekly, then monthly. I have often talked about the mental aspect of keeping myself healthy and recovering. I am certain that without this health crisis, I wouldn't need to see a psychologist. I am also certain that one way or another, I would have gotten myself to the place I am at now. However, I think it might have taken a lot longer and it definitely would have been more tumultuous getting there.

I have always been a mentally healthy person but I don't think one person is capable of maintaining a healthy mind under the particular stress I endured. At some point after I had my first ostomy surgery I was very much in limbo between living a life of a healthy looking person but still dealing with incredibly dibilitating symptoms. As I tried to resume parts of my normal life, it was evident that something needed to change but I wasn't capable of doing it on my own. A friend of my family was very aware of the physical and emotional pain I was in and recommended I talk to someone, and so I did.

The biggest reward I gained from therapy was that I had someone to hold me accountable for the things I wanted to do but was too scared to act on. Throughout my struggles with my doctors here in Philly, I always talked about how I wanted to go back to Maryland but I never did. The more I talked about it, the more I understood that the decision to return to a doctor I trusted was the only way I would be able to come to a satisfying conclusion about what decision to make. Therapy provided me with someone whom followed up with every single thought that came out of my mouth. I am not so certain I would have started working again or returned to school as soon as I did without this.

Before this last appointment it had been over two months since I saw my psychologist but she wanted to follow up with me one last time and officially "close" my case. It was emotional to return to her and know it would be the last time I would share such intimate details of my life presently. But, it was also an appointment less focused on the steps I needed to take to regain my life. Instead I told her about how great it felt to tell my boss about my past with Crohn's, the contentment and challenges I feel as a college student again, and the happiness of being able to share the past few months of my life with amazing people who have accepted me completely.

I know I will be okay without that safety net in my life. But, I am also grateful that I was open-minded enough to understand that sometimes I have to ask for help. I am certainly glad I did.

The end of summer...The beginning of everything else...

I think milestones and holidays have been markers for me understanding the passage of time. As I have talked about too much on here, I have a warped sense of time in that I feel like I need to pack so much action into small spaces just because I've never been used to having time. Also, no matter how hard I try, I will always feel like I am struggling to catch up to the rest of the world. However, I think this past year helped me to quell many of my fears because it was the first time in my adult life I knew I was going to be fine so I was free to dream as big as I wanted.

The end of this summer is just another reminder that time will always pass too quickly regardless of me feeling like I'm living every second of it or that I am wasting it away. I got to do a lot of fun things this summer and although I feel like it flew by, I have so many memories that I know I can look back on with a happy heart because they were done without thought as to wondering if I would be healthy enough to carry them out. I got to go to weddings, visit friends in Maryland, make new friends, host my friends here in Philly, and start a new job that has added to my livelihood. I hope every summer from now on can be filled with so much activity.

With the craziness of the hurricane, I have been given an extra week to enjoy myself before grad school starts. Just walking around on campus today and beginning my readings, I am incredibly excited and I feel for the first time in a long time that things are falling into place as a direct result of my decisions. As I delve into reading for school I am realizing even more how much my illness directed me towards my field of study. I still have fears and worries but I know I am ready to face them head on.

In my social life and work life I can see how differently I judge others. I have become extremely opinionated, but open-minded. The fact that I confided in my co-worker about my health so quickly initially boggled my mind but then I realized it made perfect sense with the person I have become. I am ready for it all; to open up, to be challenged, to hurt, to learn. I will never stop learning from Crohn's because it will always be a part of me. It is a huge story of many chapters of my life but as the pages keep turning and I write new memories, it will no longer control the outcome of the decisions I make.

I can't help but think back to what my dad used to tell me all the time when I was sick. He would say, "This will not define your life," and at the time I couldn't imagine a day where it didn't. I understand what he was saying but I have also come to understand that it has very much defined my life exactly opposite of the way he feared it would negatively consume me. What a great feeling to come full-circle and say that aloud. To say that something you never wanted to define you has actually come to add a sense of self-awareness that would never have been possible otherwise; To say that yes, I am okay with Crohn's playing a role in how my life is played out. It is truly a full, exciting feeling and I am happy I have all of you to share it with.