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

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.

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!

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.

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.  

Tomorrow..

Tomorrow (or today) I will find out my surgery date.

I will head into this surgery healthier than I have ever been before such a procedure.  I'm heading it to it with knowledge of completely what to expect. So why is it harder?

It's harder because it's not black and white.  It's not that I'm doing this surgery because I absolutely have to, like every other surgery I have ever had.  I am doing it to improve my quality of life.  To endure physical, emotional, and financial hardship for the next month because I know this small suffering will benefit me indefinitely.

It's harder this time because I have a life.  I have my own apartment, a great job, a fulfilling graduate school program, and supportive people in my life. That's pretty much everything I have ever verbalized here.  It's harder because there's more to lose when you're heading into a surgery as a person who has a life waiting on the other side.  I never had that before.  Before, no matter what happened after surgery, I only had to answer to myself and my family.

A month.

I shouldn't complain, nor fret.  It's just a month.  It's not my life.  I will emerge on the other side even better than I am now.  It's nothing in comparison to the past.  It's just a reminder to be grateful for my health and the fact that I have the most supportive friends and family I could ever need.

Be grateful for your health.  Please.  I am.  Every damn day.

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...