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:



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...



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!