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.

The message was clear…

I try not to dwell on the past but in order to understand me, this disease, and why I am the way I am today-living with part of my intestine protruding out of my body with a bag attached to my side-I have to share it.  On the days that I feel like crying, giving up, or hiding from the world…I write.  I write from the depths of my soul and I share my story to help other’s feel like they aren’t alone in this journey.  With that being said…this is the transition from Pomerado Hospital to going home.

By this point it was weeks of being told that once my platelet count was good, I could go home.  After a month and a half in Pomerado Hospital I was ready to leave.  However, my Doctors insisted that my platelet count had to be a certain number before I could be released.  Every morning, during morning rounds, I’d ask my numbers-and do my best to remember the answer by the time my mom and mother in law showed up.  Still on Dilaudid daily, mixed with Benadryl and other medicines, it was hard to recall a lot.  However, I remember the morning my Doctor came in and said that I could go home.  I was so excited to get home to my puppies and to be able to sleep in my own bed.  At this point I still had the picc line in my neck-and I remember my husband being the only brave soul in the room to stay and watch as they pulled this long tube that went in through my neck and was (for lack of better words) sticking into my heart.  It takes a lot to make a Marine weak in the knees..and twice now he’s had to endure the same displeasure of seeing his wife having long tubes pulled out of her.  Nonetheless, he didn’t faint and for his strength during a difficult time, I will always be grateful.  I remember when the tube was being removed, the Doctor asking me, “Do you want a picture of this…” and I couldn’t bring myself to look at the tube (approximately the length of my arm) long enough to get a picture.  Looking back now, I wish I had-but who knew I’d have such a long story to tell.

On the drive home from Pomerado Hospital, with my husband, I remember crying tears of happiness and sadness.  I was so happy to finally be out of the hospital, after being stuck there for so long. Everything seemed new, after a month and a half of pure hell…I was in the car and listening to the radio.  The world certainly didn’t stop because I was sick, and the new songs on the radio were music to my ears-literally.  It was the strangest feeling, but I remember getting into my car (the passenger seat) and just feeling the sunshine beam into the car as we drove home.  It felt amazing, with the sun glistening against my snow-white skin tone, I remember feeling free-finally free.  It was the little things that I took for granted before…like riding in the car…that now..felt entirely different to me.  I remember pivotal moments throughout my illness, the day I sat outside in the rain as my mom wheeled me around the parking lot while it sprinkled tiny rain droplets on my hospital gown, and the day I left Pomerado Hospital.  I remember the feeling of pure joy, that until then I’m not sure I experienced.  Pure joy, pure appreciation for life-my family and close friends.  It wasn’t a vacation (by any means).. but to me these different memories I have in and out of the hospital are some of the best memories and better than any vacation I have ever been on.

The sadness I felt was beyond words, but I’ll do my best to explain the unexplainable.  Imagine this, entering the hospital with hopes and high expectations that not only would my doctor fix what was wrong-but in turn make things all better.  I mean this is why they get paid the big bucks right?? This was not the case for me.  Not only was I told there was nothing else he could do, or offer me for pain relief, but now I was preparing myself mentally and physically for the next step.  When I left Pomerado Hospital, I already knew what was to come.  I already had an appointment with Dr. Sandborn (who came highly recommended from Dr. Lee).  I needed to prepare myself mentally as the inevitable was coming.  Through the process at Pomerado Hospital, and even into the first meeting with Dr. Sandborn-I had no idea that removing this diseased organ from my body would mean anything other than simply removing my colon.  However, it’s not that simple-and perhaps I was naïve, or perhaps I was in too much pain to understand all the options as they were presented to me over the past few months.  Either way, when Dr. Sandborn explained the process of removing my colon-I remember looking to my mom in shock.  With a look of fear and panic as if to say to her “their going to do what and put it where?”  As Dr. Sandborn suggested other drug therapies, which I quickly negated, the message was clear to him-surgery was MY only option and hope for relief.  Without any other solutions to offer-he provided the referral to see Dr. Sonia Ramamoorthy.

“Milkshake Renee” 🍦

The hardest part about recalling my memories for these blogs, is recalling what I feel I have suppressed subconsciously.  However, I have all these random memories-some of which (I think) are a funny blur.  Prior to my mom and mother in law arriving in California…I had this nurse that I had nicknamed “Milkshake Renee”.  I called her this because I had two nurses named Renee-so to keep them straight… I eventually nicknamed one Milkshake Renee and here’s why…..

One night, my husband was at the hospital with me and I asked him if he wouldn’t mind getting me a milkshake from Carl’s Jr.  I was feeling particularly good that night, Dilaudid was to blame, and by this point I had been in the hospital for a few weeks.  Therefore, the highlight of my day up until this point was the night nurses (as they are so much more relaxed and just overall nicer), my husbands arrival in the evening (as he was going to work and then coming to the hospital at night), and the drugs they were giving me to keep me pain free (aka IV  Dilaudid mixed with IV Benadryl).  Most certainly, the best part of my day was when I would have all three-a great night nurse, my husband close by, and my IV meds.  It was about 11:45 PM when I asked my husband if he would be a doll and go get me a milkshake.  He quickly agreed since Carl’s Jr. was right outside of the hospital’s enterance (and I think he was in the mood for a milkshake too), and since he agreed so readily I then picked up the phone and dialed my favorite nurse.  I remember thinking to myself, this is the least I can do from this hospital bed.  So when she answered her nurse phone I said, “Renee, my husband is going to get me a milkshake, would you like one also-my treat!”  Her response, after she giggled (as she must have been able to tell I was a little high on meds) was something like this, “I would love one, thank you-you’re such a sweetheart.”  I responded asking her what flavor she wanted and she replied quickly, “Chocolate!”

To be honest, I don’t remember much after that.  Except when I would talk about her I would refer to her as “milkshake Renee”…Not long after I was put into ICU.  Where the memories went from milkshakes and nice nurses to having restraints put on my hands and feet and being scolded to stay in bed.  The transition from happy to scared and feeling alone (although I know now that I had people around me) is quick and somewhat seamless in my memories.  If anyone is confused by the sequence of events with this blog, it’s because in my mind-this is the order.  I remember specific events not in sequential order-but I try my best to express the happiness, sadness, and how unbelievably scared I was and still am through most of this process.  My memories are a blur, but to my close friends and family that were (and still are) a part of this journey with me know the gruesome and horrific details of living life with ulcerative colitis and now a burning stoma.