I don’t want it!

The true nature of an invisible illness. She looks fine, but inside lies a battle of epic proportions.

Once I received the news of my diagnosis, my life view began to change. The disease was turning my life into something I didn’t want to live and me into someone I didn’t want to be. I had to call off work many times due to sickness. I was missing a lot of family gatherings and social outings with friends. I spent a lot of time at home just trying to deal with all the symptoms and side effects that each new day would bring! I was experiencing anxiety about just leaving the house for fear I would need a bathroom and not be able to make it to one. But what bothers me the most– I couldn’t keep my commitments or do the things I enjoyed doing. I’m a very independent, self-sufficient person to begin with and I value sticking to my word. HA! Enter Crohn’s, ready to teach me a life lesson– I’m not in control! (Anyone else feel like, as soon as they say they are going to do something, the universe immediately aligns so that you can’t do it? lol Or is it just me?)

Needless to say, Crohn’s was making me focus my attention on all things medical. Leaving little room for anything else. That can get really depressing really fast. (One of the reasons you will hear me talk a lot about keeping enjoyment.)

A memory that really sticks out for me–I remember looking into the bathroom mirror one day at work and I didn’t recognize who was looking back at me! I didn’t recognize myself at all, in fact, I was sure I was seeing someone else. My color was gone, cheeks shrunken in, and deep dark circles under my eyes. I looked like death! It felt like I was dying before my very own eyes and there was nothing I could do but watch! Almost an ‘out of body’-like experience. It was horrifying!

Truthfully, all I could think was, this isn’t what I asked for! This isn’t what I wanted my life to be like! Even when I was in the hospital, both times, with the most excruciating stomach pain ever, I remember saying out loud “I don’t want it! Make it go away!” Looking back, I laugh! As if for some reason, saying the words “I don’t want it!” really would make a difference. Psshh!! Like the inflammation in my body cares what I want!? Lol Silly Jana! But I realize now…those are fighting words! As long as I am saying “I don’t want it!” I know there is still fight in me and I intend on giving this disease a run for its money! Ha ha ha, as silly as that is! That’s all it takes is that one little ounce of fight in ya! 

So, I began spending all of my free time researching Crohn’s Disease so I could understand as much as possible about what was happening to my body and in turn, my mind. I wanted to learn everything I could in hopes of having a better quality of life! I used the CCFA (Crohn’s and Colitis Foundation) website as my go-to resource for everything as my doctor suggested. I requested all their materials on treatments, diet, etc. and I joined their online support group to hear from others about their experiences.

I saw something I didn’t want to see in the mirror that day and it was terrifying! But it took that scare and it took all that pain I’ve been through to get me where I am now. Its those moments that motivated me to seek knowledge about my disease and support! It also motivated me to be a more active participant in my own healthcare. I would call the nurse when I was experiencing symptoms or side effects and we would address the issue head on! I began working with my team of doctors, keeping everyone in the loop about my condition. And it’s the best thing I could have done for my health and my peace of mind too!

This disease may take us through a really rocky ride– depths of depression, breaking points of pain, it’ll even make you face your fears. I truly believe that it’s only during those ‘lows’ that we find our strength time and time again. So next time you feel those familiar feelings of sadness and disappointment that come with a flare, say to yourself “I don’t want it!”. You might laugh! Lol, which is good! But you might also find your fight! And that is something I wish for all of us! To keep fighting and pushing for that better quality of life that we all deserve!

This story was published on The Mighty.

Supporting vs. Fixing

Okay, I’m gonna come out and say it! Don’t try to fix me–lol! I have very good reason to feel the way I do, and I want to share it with others so they see the reality of this disease. Being honest about what emotions I’m going through is helpful for me and helpful for others going through the same thing! Now, I appreciate people that have suggestions, like taking probiotics or drinking nutrition shake concoctions– I know it comes from a place of caring and love. And hey I’m all for being a guinea pig and trying out new things to see if they help! But I’m going to do my research first! However, If you think you have the answer to my problems, I’m sorry but you don’t. No one has the answers for this!

As a woman I understand the need to fix things and make things better. It is our nurturing side. We just like to do that, helps us feel in control or something, ha ha ha! But the reality is, Crohn’s Disease does not have a cure. There is no fix. There is little known about why it even occurs except that there can be certain environmental triggers, a genetic susceptibility and it involves a complicated immune system response.
Changing my diet, taking medications, probiotics, or vitamins will not magically cure me. These things can only help prevent symptoms from worsening, ideally promoting remission. Remission doesn’t mean cured either. It means that you just aren’t having symptoms right now, you still have the disease. And the disease is different for each individual. So one thing that works for one person, won’t necessarily work for the next, because our bodies are different. It is one of the most frustrating things about managing this disease!
The sad truth is that 70% of people wth Crohn’s Disease will require surgery eventually. And 30% of those people will experience a reoccurrence of symptoms within 3 years, 60% will experience reoccurrence within 10 years. (Those are statistics I grabbed from the Crohn’s and Colitis Foundation website, I will link the resource below.)

Now–All that mumbo jumbo being said, how do you really show support for someone with Crohn’s disease then? Here are a few of my suggestions–

1. Listen! Just listen, and hear what they have to say! Respond with what emotions you think they must be going through! That validates their feelings! I can’t tell you how amazing it is to hear someone gets how I feel! It’s just like, Thank you!!! I’m not going crazy then! Ha ha ha!

2. Take your own initiative to learn about what they are going through. It shows you care. It touched my heart when I learned that my mother had done her own research on my disease. Try checking out the resource I have linked below from the Crohn’s and Colitis Foundation which gives a ton of facts on the disease, if you are interested in learning more.

3. Show you are thinking of them in your own way! I have one friend that likes to post adorable animal videos on my Facebook to make me smile–I love her for that! I get daily emails from my father that are either funnies to get me smiling, or they are inspiring to help me stay strong! It lets me know he’s aware its not easy, but he’s thinking of me. I also live 12 hours away from my family, so it means even more to feel that support from far away!
Just knowing that someone is thinking about you/what you’re going through, possibly understands what it’s like for you, or just takes the time to listen– is comforting and heartwarming. That is support! It’s the simplest answer, but the most impactful.

To my ladies with Crohn’s–I would love to hear what your suggestions are too! Please comment below! What do you most appreciate in support from your friends and family? What does support mean to you?

Crohn’s and Colitis Foundation resource
“Facts about Inflammatory Bowel Diseases”
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