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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.


 

 

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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 ūüźĆ

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.

We all endure pain…but in the end-it is how we handle that pain which builds our character…

I often feel as if I’m stuck in a body I no longer recognize.¬† It’s as if my insides are winning, and my body’s appearance on the outside now displays all¬†the¬†damage¬†from Ulcerative Colitis. ¬† Whoever said this was an invisible illness was wrong.¬† If you have Ulcerative Colitis and live with the pain on the inside and behind closed doors, eventually your outside appearance will reflect what your insides are yelling at you.¬† The pain will ultimately¬†wear you down so much, beating every last ounce of energy you had, until there isn’t any other options left but to choose the inevitable.¬† We all suffer in silence and deal with the embarrassment¬†and daily struggles of living every single day.¬† What happens when you realize you have nothing left and no other choice-you fight some more.

The weeks after getting out of the hospital I remember feeling the withdrawal of the pain medicine, and being extremely sick and fatigued-to say the least.¬† It was a hard transition, as I was still taking meds for not only the pain, but also for the C-diff I had acquired while in the hospital.¬† I was sent home with a bunch of medicines and also a limited amount of pain medicines, as Toxic¬†Megacolon (TM)¬†was also a worry for my doctors.¬† I remember being warned repeatedly, while in the hospital, that if I asked for too many pain medicines¬†that TM was a likely possibility.¬† Obviously, the pain far surpassed anything I could tolerate, and without much thought I continued to¬†take the pain medication. ¬†¬†I took Dilaudid in the hospital and Hydrocodone when I got home.¬† After being on the pain medicines for so long, my body became used to having those drugs, and I experienced what I would later realize was a withdrawal.¬† I¬†remember laying on the couch tossing and turning and feeling as if I was going to puke.¬† I did a few times, and it took days of feeling not well to feel¬†“better” again.¬† That feeling of unbearable pain¬†mixed with prednisone, and about half a dozen other medications didn’t help much during the withdrawal process.

I remember being at home and feeling absolutely miserable, everything was getting to me, and¬†unfortunately for my family-no one was safe.¬† Life wasn’t fun for several weeks, and continued¬†even beyond when I¬†began to deal with the trauma of losing my colon. ¬†It was an emotional roller coaster, to say the least. ¬†¬†I was lucky enough¬†to have had my family around during such a difficult time, and it was a hard process. ¬†A decision I had to make that wasn’t easy.¬† In my mind, I had exhausted all of my options.¬† I had tried the¬†holistic route, I tried the medical marijuana route, and I had tried every¬†drug imaginable.¬† After my¬†Remicade ordeal, I was no longer a¬†desirable candidate for Humira or Imuran nor was I brave enough to experiment with the drug Entyvio that was approved by the FDA in May 2014.¬† The road was¬†narrowing with less and less options¬†and¬†the only path left, or so it seemed, was the road that would lead to the removal of¬†the diseased colon from my body.

During my first meeting with my surgeon Dr. Ramamaoorthy (in mid August-2014), she explained everything and it all sounded relatively routine.¬† She explained the three step surgery to me in relatively simple terms.¬† Step one, go in cut out the diseased organ (colon)¬†and create the stoma.¬† Step two (three months later)¬†go in and create the “J Pouch” while rearranging my insides completely-in conjunction with tacking up my fallopian tubes out of the way (as to not create more scar tissue and keep them out of the way of the J Pouch).¬† Step three (3 months later)¬†the final surgery and “the takedown” of the stoma and the reconnection of¬†my stoma back on the inside.¬† It all sounded simple, straight forward, and as I mentioned earlier, routine.¬† However, I should have known I would be the extraordinary case that wouldn’t go as planned.¬† From the beginning of this entire diagnosis of Ulcerative Colitis I have been given a hard time-from the Doctor’s misdiagnosis, to the lack of proper medical treatment at Balboa Naval Hospital, to my stay at Pomerado Hospital¬†that, certainly did not¬†go as planned.¬† It took me awhile to understand the process and what would be happening to me.¬† In fact, I feel like I was in such a whirlwind of pain and anticipation that I couldn’t even recall what she said to me-lucky for me…my¬†family was right there to remind me.

I can’t¬†describe the pain well enough to help any of you who don’t have UC understand what it’s like.¬† All of my life, I’ve eaten whatever I wanted…without much consequence- be it weight or anything else…and now I could only eat bland food.¬† As everyone’s suggestions were taken under advisement-the message my body was giving me¬†was clear…there wasn’t anything I could eat and no magical recipe of foods that would make the pain stop.¬† Coffee, my love for coffee, was a distant memory¬†in the weeks leading up to my first surgery.¬† So on top of the physical pain, and¬†the continuous embarrassment, was the¬†daily emotional stress of figuring out what to eat and when to eat it.¬† If I had to leave the house (for a doctor’s appointment), I would refuse to eat anything several hours before and while I was out of the house for fear of an¬†accident.¬† At times I considered starving myself, hoping that would help my colon relax and feel better.¬† Emotionally, I was a wreck.¬† I¬†was angry, sad, fearful, hopeful—but angry.¬† The prednisone didn’t help my¬†anger (that’s for sure).¬† Everyone in the world can think they understand…but until you’re walking in the shoes of someone who has UC…you have no idea the pain we’re enduring.¬† Depression usually follows a diagnosis of UC (and I wasn’t the exception).¬† You realize that a part of your life is over; the part where you can eat and not worry-have a drink and not worry…or do anything and not worry.¬† Car rides became scary,¬†and even trips to Target became scary (as it’s a huge and overwhelming store).¬† Anywhere¬†I went, where I didn’t know if there would be a public restroom close by¬†would send me into an anxiety filled panic.¬† There’s a saying, “You know you have UC when you choose where to shop and eat based on their public restrooms.”¬† This was how I lived my life for¬†8 months¬†before I realized, this wasn’t the kind of life I wanted to live.