person struggling to hold up clock hand that is being weighed down by intestines

IBD Is Time Consuming & It Sucks

Living with chronic illness sucks. Over the last 16 years living with IBD, I can’t even count the number of times I have been on a no-solids diet. I'd consume barely anything by mouth for days, to weeks, to months. Recently, when I did the last injection of my maintenance biologic, I already hadn’t been feeling well but was a few weeks late because of infections.

Tired of the frustrations of IBD

So I sit down to relax and have a guilty pleasure as I do whenever I inject my medication. A few minutes go by and suddenly, I puked all over the carpet. I cried and cleaned up my insides like it's an everyday occurrence. Lately, it is. When you have IBD, you learn humility. I’m sick of it.

I'd love to say that I am able to cry & get over it.. "cry now, but promise me that you'll never cry about this again" is usually what I tell friends going through a hard time.

Crohn's has taken so much from me

But IBD doesn't work like that. What Crohn's has taken from me and the effect it's had on my friends, my family, my career... It's. Not. Fair. We know these things will happen again. It’s mentally draining and to those who have never experienced any sort of serious illness, they may never truly understand how much time IBD consumes your life.

Support and validation from others

To know that your illness and the terrible things that come with it is extremely emotional. But to know that some loved ones in your life will never truly understand how serious things can get is a terrible feeling. As patients, loved ones, significant others, all we want is that validation and understanding.

But who said life would be fair? Nothing has been handed to me on a silver platter. Nothing told me that life would be amazing, full of opportunity and I would feel comfortable in my own skin.

Challenges and time spent taking medications

This week I will only inject one drug like I do every Wednesday. I ingested over 12 pills today; a significantly drastic number compare to when I was first diagnosed taking more than 40 per day.

I honestly can’t count the hundreds of infusions I’ve had to help control the complications of my IBD. From blood transfusions to TPN, to IV steroids, to fluids to biologic infusions. In the last 3 years, I’ve spent more time at an infusion center than I even care to think about.

It’s been just over 6 months since the last time I had to use a central line to get the medications I need. I spent 5 days a week there for more than half my day. IBD can consume your life very quickly and without the proper structure of a good support system, patients can be set up for failure.

This is why I advocate

So if you wonder why I fight like hell, defend my community & build alliances with some amazing, courageous people? I'll raise funds & awareness until there is nothing left in my heart to give. I’ll run until my guts fall out when I have the ability too.

I’ll advocate until there is nothing left to defend. I’ll help this community for as long as I possibly can. I'll fight until I'm no longer able to. For you, for myself, for our future generations, for the pediatric patients, who we wish we could take the pain away from and deal with it ourselves.

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