Taking it One Bag at a Time

The hardest thing in the world is to learn to accept that you can’t change or control what happens to you.  Today, I’ve gained some good news–and although it’s not something I’m totally comfortable sharing with everyone today, I hope to eventually be able to share all that I’ve learned through the process of being sick.  I’ve learned that I have to be my best advocate for myself.  If I don’t think something is ok, I say so-especially when it comes to my medical care.  If I think I should have an IV in my arm versus my hand-I will say so.  Where as, in the beginning, I was more timid and unable to voice my thoughts for fear I wasn’t right. When it comes to your body and your life-whatever you think is best for you -is.  It took me many surgeries and years to come to this conclusion.

The Stress of living with this illness can be almost unbearable at times-I’ve said this before…I have to concentrate to concentrate.  It’s hard, this disease is one of the worst situations I’ve ever had to deal with.  There are days when I feel like I can do this, and then there are days when I know I can’t do it.

Lately, I’m struggling to keep weight on.  (I know, I know…poor me.)  But it’s not fun to have your clothes hang off of you–espeically when you like the clothes you own.  I’ve never known the struggle of being “thin” until I got sick.  Then I learned quickly, the grass isn’t always greener on the other side.  Even the smallest ostomy belt doesn’t fit because it’s pulled as tight as it will go-but it’s still not tight enough.  The struggle is real, and my real point is–the struggle is real for everyone.  Everyone has something, or many things they don’t like about themselves.  I’ve become extremely insecure with my body since gaining a bag.  I know most ostomates are proud and wear their bag as a symbolic badge for courage–and I commend every one of you who see it as a strength.  I unfortunately, see it as my weakness.  I’m not comfortable with it and it constantly feels foreign to me.  I’m not writing this as a “poor me” blog-but I’m writing this for everyone else who also hates their bag today.  It’s ok to hate it, and it’s ok to love it–and it’s even ok to have a love/hate relationship with it.  The bag saved us, but it also replaces a piece of us that could no longer manage to survivie in our bodies.  In a way, every day I mourn the loss of my colon and the representation of what it meant for me to have it.  Normalcy.  Having a colon is “normal”-so it would only make sense that having that creates a sense of normalcy.  On the flip side, I feel this is also why so many of us are desperate to pop any drug into our mouths that may even offer a slight chance of hope for normalcy.  The hardest thing is rembering and reminding oursleves everyday that we are a version of normal–our normal-but it’s taken me years to convince myself of this and I’m still working on it.

Along the way, through anal manometry testing, dilations, pokes and probes I’ve learned that no matter what curve ball life throws-I can do it.  I’ve had procedures that would make you squeemish at the thought, and I’ve been so close to death’s door that almost anything else seems trivial.  Yet somhow, I push through.  Sometimes it’s hour by hour and sometimes it’s day by day-but I keep pushing through.  I’m setting goals and achieving them, and I’m remembering the important things about life once again. Taking it one bag at a time, we get by with a little help from our ostomies.

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🌎👁🐝D

Today is world IBD day…a day to educate one another about the different types of inflammatory bowel diseases.  I stopped to think about what world IBD day really means to me.  Some of the words that came to mind were brave, purple, strong, support, steps, courage, fear, strength, pain, and awareness.  What I write, the world might read.  Words are powerful.  The day I was diagnosed-with just one word, my world changed.  Colitis.  I’m going to do my best to get through this blog post without a tear today-and so far so good.

 

What I believe a few of my IBD friends would want me to say…we are strong.  Mentally and physically we’re fighting all the time.  We’re fighting to make it through the day, and in a way we’re magicians too.  We hide the problems so no one else can see.  We pretend most of the time that everything is ok-when really we are counting down the hours until it’s an acceptable time to crawl back into bed.  In fact, most days-my biggest accomplishment might be staying awake all day long (usually this doesn’t happen-which is why it’s an accomplishment).

We take pills, and meds and more pills until we’re blown up on prednisone.  This is the reality of an IBD patient.  Since no one knows what causes it–truly–and everyone’s body is unique, there isn’t one clear cut way to manage IBD patients.  So typically, I’ve found, doctors treat the symptoms instead of the disease (but not before giving  Apriso and Lialda whirl).  You’re bleeding-try Prednisone.  You’re tired-take iron.  You’re nauseas-take Zofran.  You’re in pain…now wait a minute…how much pain..on a scale of 1-10.  Ok, so my answer is usually 7/8…because in my opinion there’s what we call “tolerable” and “intolerable pain.”  IBD patients know, pain is inevitable –it just is.  Therefore, if we’re in pain and we’re actively seeking out help it’s for a reason.  If we had a slight pain, we’d be out doing something we enjoy.  Ok, so the pain is a 7…take Hydrocodone or Dilaudid.  Your back hurts… try Lidocaine patches.  Things still aren’t going well…let’s try 6MP..it’s a chemo pill but it’ll be ok.  All the while, we keep swallowing pills and trying to keep the symptoms at bay.  Have you ever met those people who say, “I don’t like to take pills”–and you think…they don’t know how bad a pill is until they’ve tried to swallow a potassium pill.  Those potassium pills are no joke!  We’ve also met those people who cringe at the sight of blood or getting an IV put in…and again we think…they don’t know pain until they’ve had to have potassium intravenously pumped into them (which burns like fire in your veins).  Oh and by the way, I’ve had/used all of the above.  So you can’t sleep because you’re up going to the bathroom in conjunction with the Prednisone that (had I known in college keeps you awake-I might have been able to pull an all nighter better–kidding mom)…but seriously…Prednisone is the devil in pill form.  It keeps you wired…so…try Ambien they say–it’ll help they said.  HA!  If I had a dollar for every time a doctor told me to try something, I’d have enough money to have a lab created colon made.  I could go on for days, the point is…IBD is hard.  They can pump all these miscellaneous drugs into our veins but at the end of the day–we’re stuck.  We’re at the mercy of all these doctors and specialists.  At times, it feels like the blind leading the blind.  Oh…you’re also feeling sad/miserable/depressed because you have a disease that you didn’t plan for and you’re life now revolves around where the closest bathroom is…take Zoloft, Lexipro or Wellbutrin (dealer’s choice really).  If you think I’m utilizing humor mixed with a side of sarcasm to lighten this blog up–you’re right.  The funniest things are true…and I am by no means even stretching the truth.

Awareness is crucial to the success of discovering a cure.  One day, one step at a time we’re all trying to help solve what seems unsolvable.  Through support groups I’ve made friends, we all have similar symptoms have taken similar drugs and understand the affects–but we’re all different and we don’t understand how this happened to us.  All diagnosed before the age of 30 with different backgrounds, different genetic makeup, yet we all have one thing in common-IBD.


 

 

It’s not ok…and that’s ok.

You feel like no one understands, and the few that do won’t make you explain.  It has been 73 days since my last blog.  A lot has happened, a lot has changed.  I’ve never been one to put my entire life on Facebook or social media-and I only do it now to help and educate others.  No matter how much I explain my situation there’s always so many layers of confusion for my friends and family.  My best friends know, don’t ask me “how are you”…if it’s bad..I’ll tell you-other than that we need to discuss something else.  I had my last surgery (for now) a month ago.  I’ve learned my strengths and I’ve learned my weaknesses.  I’ve literally had moments where I don’t think things will ever get better…and I’ve experienced a loss of apetite that no Italian should ever have to endure. I become so frustrated that I feel like lashing out-but I don’t.  I’ve become silent these last few months because I wanted to be the positive “it’s ok” voice that everyone around me needs to hear.  It’s not ok, it’s very very hard to be sick.  Any kind of sick.  I’ve also never wanted anyone to feel bad for me-in my opinion I feel bad enough…no one else needs to feel any bit of how I do.  I often think about blogging this or that-and I know what I should say and what I actually feel couldn’t (at times) be any more opposite.  I also feel like at this point, people are wondering…is she better…or is she still sick.  No one asks me, but I can only imagine the thoughts.  If I post a picture…a picture captures a moment in time.  In that moment, I might be ok-in the next…I might not.  It’s been 73 days since I’ve posted my last blog…I’m trying my absolute best to get back to where I was mentally, physically and emotionally.  Everyone is dealing with something…everyone…and for that reason I don’t feel special for my feelings. All I ask is that when anyone sees me out-you don’t say “how are you”-my answer will always be hesitant and I will probably lie to you.  When I’m great, you will know…but until I’m back to me…instead I’ll just be this.  I’m frozen for now- waiting, praying and hoping for a day when the pain mentally, physically and emotionally will cease.  It’s not ok…but it’s ok.

Happy Anniversary 🐌

They say a picture is worth a thousand words.  I tried my best to write a blog entry but was unsuccessful (multiple times).  You see when I share my story…it sometimes causes me mental distress to do it.  I relive the situations so others understand and become aware that this can happen to anyone at any time.  I also do it to avoid those awkward conversations that could frankly take hours for me to really tell you how I am or how I feel.  Today is the one year anniversary of my snail and although I get mad at it often…and hate the pain it causes me on a daily basis it has saved my life more than once.  I couldn’t write a long blog this time..because my tears got in the way.  I usually try to only post positive, upbeat and heartfelt blog posts. However, the truth is…I’m sad, mad, grateful, and beyond blessed today.  Thank you to all my friends and family who help remind me everyday that I’m still me.  I’m a wife, a daughter, a granddaughter, a sister, a cousin, a niece, a daughter-in-law, a best friend, a friend, and someday I hope to be an inspiration to others.

Picking “The Snail” Spot 🐌

As I sit here, in an itchy and uncomfortable amount of pain I wonder what a day would be like without any pain or discomfort.  Those days are a faint memory to me and I complain less and less because I don’t want to appear as weak-when truly I am emotionally and mentally the STRONGEST person I know.  I know, I know..sounds a bit boastful right?!  When you’ve endured seven surgeries to date and live in a constant state of skin burning and irritation-then you can judge.  I won’t go on about the pain, but here’s a comparison for you all.  Ever taken tall socks off after a long day, and when you take those socks off you can see the indentation mark from the socks…and it begins to almost itch from the restriction all day.  That’s what it’s like wearing a bag with an ostomy belt 24/7.  Except you can’t take the bag off, but for short periods of time.  Welcome to my itching, burning, painful hell with what I have referred to as “the snail”–which mostly is because it is constantly moving.

The entire day and night before my very first surgery, I was beyond sick.  Everyone who knows about colonoscopies understands you have to take, what I refer to as “colon blow”–the name speaks for itself.  At this point I weighed about 117 pounds and I was weak from my two months in ICU and the Remicade reaction.  From the time I got out of the hospital to the day before my surgery, anything I ate would go right through me-literally.  So, when it came time to take the colon blow…there wasn’t much left to blow.  However, my mother insisted that I try to drink some of it.  I also was given an antibiotic to take with the colon blow-which created the perfect storm within my body.  I was a mess, I was puking and sicker than sick (as if that was even possible).  I have never been able to drink that stuff and by this point it was my third round of bowel prep in just five months. I truly hope they develop some kind of alternative that tastes way better for you future Crohns and Colitis patients, because this stuff is no joke.  It tastes absolutely terrible going in and it’s equally as terrible coming out (via vomit or otherwise).  Even writing this now, and thinking back to that last day of taking the colon blow, my throat clenches and my stomach does a flip or two.  If you’ve never experienced it, consider yourselves extremely lucky!

I didn’t have a lot of choices, as my previous blogs stated…it was lose the colon or live with the excruciating pain.  Obviously a no brainer for me, but even the most certain person has doubts.  I had doubts up until the night before, when the nerves started to set in that tomorrow I would lose my colon.  At this point my nerves set in and began to overwhelm my stomach.  I remember sitting on the toilet (as if I had anything left in me-which I did not) and my colon was spasming.  Colonic spasms are extremely painful and are known to be brought on by internal stress.  Which, no doubt, I was having the night before the biggest surgery of my life.  So as I’m sitting on the toilet, not going, but in excruciating amounts of pain-my mom came in the bathroom.  By this time I was in tears and I remember her words to me like it was yesterday, “Jerica, after tomorrow you’ll never have deal with this much pain again.”  I took those words to heart, and replay them over and over in my head even today.  Weather it was the truth or not, it was what I needed to hear in that moment.  Also in that moment, Gibson (my little Morkie puppy) who is no doubt the light of my life…came strolling into the bathroom with his little blue blanket attached to his bum!  He could tell I was upset, and he too, knew I needed his little personality to make me laugh and temporarily forget about the pain.

The next morning I woke up, and tried my best to mentally prepare myself for what was to come.  There’s no words to describe the fear I felt.  There just is not.  I knew things would change and I hoped for the better.  I knew I’d have challenges ahead of me and that life would be different going forward.  Very little people knew the details of the surgery I was going to undergo-and in the beginning I didn’t want anyone to know anything.  In a way, I looked at it like this, the people who needed to know did and everyone else could wait.

As I laid in the hospital bed, waiting for the stoma nurse to come in and draw the spot where “the snail” would make it’s debut I became very nervous.  I remember the nurse asking me where I would like the stoma to be.  I had no idea that the spot I chose would be there for nearly two years-but I pointed and said how about here.  I mean did it really matter?  At the end of the day, a scar is a scar and it wouldn’t make a difference to me.  She could tell I was nervous and said that sometimes people name their stoma’s-I immediately thought that was insanely weird but smiled and said, “Oh, really?”  I think it’s odd that we name our stoma’s…but I understand why people do.  I suppose that’s why I gave mine the name “the snail”…it’s weird looking…it moves and is almost always slimy.  Thinking back to that awkward conversation with Denise (my stoma nurse), I’m sure she was trying her best to make me feel confident and comfortable with my decision.  Nonetheless, it was a huge decision I was making and I don’t think anything or anyone could have made me feel at ease.

Even today, almost a year later as I’m writing this, the thoughts that come flooding back to me are those of fear and uncertainty.  I often cry when I have to relive these memories-but I do this to help others.  I think about what other’s want to read, what they need to hear, and what the world needs to know about me.  I have a unique case, and I have from the beginning.  I never intended to share my story with the world, and most certainly didn’t expect to write about my story for all of social media to read and experience.  I had no idea how long this road would be.  And still today, I don’t know where the road leads.  It’s as if I’m walking without a map, without an end in sight.  Each step seems like a mile and I’m thirsty for answers.