World IBD DAY

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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🌎👁🐝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.