IBD

Finding My Breath 🧘🏼‍♀️

Posted on by JER

It can be extremely hard and overwhelming to talk about my story. I never wanted to be inauthentic with the reality of my situation, but it’s a fine line between the truth and complaining. People who are sick hate to complain about it. We don’t enjoy feeling like the burden, nor do we enjoy defending our illness and limitations. Explaining to someone new in your life all that IBD encompasses can be extremely challenging. The question for me is how do I tell people without scaring them into thinking at any moment I could just die. It’s the reality and challenge I feel constantly. How do I let them know how significantly this has impacted my life without making them feel some kind of way or pity?

As of lately, finding my breath through all the anxiety and daily stress has been challenging at times. I started a yoga journey back in January. Per my therapist’s suggestion, it wasn’t to “get fit” or to “get in shape” but to bring a calming effect to my life. As some may know, or may not, I was 70 pounds when I got out of the hospital in July of 2018. I had no muscle tone and was using a walker to get around my house. Although it was devastating in its own way, I knew (because I had been there before) that time heals everything-and it would only be a matter of time before I regained the weight I had lost. As the months passed, from July to January, I was eating everything and anything in an attempt to gain back the weight. It took time, but by January I felt as though I could do some slight exercise. I wasn’t ready to run sprints, as during my last hospitalization I had a tear in my ACL. The tear was due to the hyperextension of my left leg while on the paralytics. While my body was at rest and I was on ECMO, I had very heavy medical boots placed on my feet to keep me from getting “drop foot”…all the while creating extreme pain and additional issues in my left knee when I was taken off of the medical sedation. I worked with physical therapy both in the hospital and when I got home and like everything else in my life, it was just going to take time to heal.

Several people had suggested Yoga as a way to release stress. Currently I’m going through personal life changes and challenges which prompted me to try Yoga at all. When I had the bag, Yoga was never an option. Due to the placement of the bag and the constant skin irritation I endured, bending in poses would have only prompted a leak. So, when people were suggesting Yoga I thought, if nothing else I’m going to try it because it’s something I could have never done with the bag. So, I walked into the local Yoga studio and signed up-with the strict intention of relaxation.

After my first hot yoga class, I fell in love with the feeling. My lungs, which had been severely compromised felt better after being in the heat for 60 minutes-I was impressed. The motions were slow, and the modifications were helpful and I felt like I was sweating out all the toxins from my body. I felt cleansed after each hot yoga session. The best part was I didn’t have to talk, I could go in and do yoga and not think about anything but the pose I was being instructed to do. For weeks I would go to hot Yoga, it was my escape from so many things that were transpiring in my life. I was learning to breathe through the discomfort and I was able to reflect on what I was grateful for. After every Yoga practice there is a moment where we’re asked to reflect on what we are grateful for, in my head I am always grateful for being alive and present.

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Taking it One Bag at a Time

Posted on by JER

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.

🌎👁🐝D

Posted on by JER

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.

Posted on by JER

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.

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

Posted on by JER

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.