Don’t just #GetYourBellyOut -pass it on!

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If you haven’t noticed the belly photos flooding social media and even news stories (heard of Bethany Townsend, for instance?), well now you know. It’s all part of an IBD awareness campaign called #GetYourBellyOut.

If you have noticed, well we are about to kick up the awareness campaign a thousand more notches.

IBD stands for Inflammatory Bowel Disease, which encompasses Crohn’s and Ulcerative Colitis. Both diseases are life changing and at times lethal. I myself came close to leaving this world at 25 due to complications from Crohn’s. And while I’m still alive and even in remission, I lead no normal life. Having a weakened immune system causes fatigue, and even in remission my “normal” is actually a roller coaster of symptoms, just not within the range of a flare. I get tired easy, my body reacts more dramatically to stress, and there is the matter of anxiety over the bathroom. So there’s my blurb about this disease.

Onto the campaign…in light of recent campaigns that have gone viral, and for good reason, the #GetYourBellyOut team has decided that instead of just asking people to post pics and donate (because let’s face it-asking and asking doesn’t exactly get you anywhere), we will pass it on by getting family and friends involved.

It’s so easy. Easier than getting a bucket of ice water dumped on you (although that was fun!). Just post a pic of your belly, donate to ccfa.org (or ccfa.uk- this campaign originated in the UK), and pass it on to someone else.

Why?

Because 1.4 million Americans suffer from IBD, and more than 5 million people worldwide, that’s why, and it’s on the rise. The average age of diagnosis with Crohn’s is 12-15 years old, although I’ve even seen children posted on social media wearing ostomies or in hospital with the dreaded NG tube hanging from their noses.

So come on, post your belly to facebook, twitter, or Instagram (or all 3), donate, and pass it on! Don’t be shy. You should see the many bellies on our page. Do it! #GetYourBellyOut.

(Founded by Sahara, Victoria, Lorna, and Gem who have changed my life, built a worldwide community, and are still rocking it even though they are four sick gals!)

Crohnic Love

Crohnically Ill

It’s no typo people. I’m here today to discuss relationships and IBD, and that ever elusive ideal we all chase called “love.”

On GYBO (#GetYourBellyOut) I’ve noticed a few posts concerning partners and IBD. While I’m no relationship guru, I’m full of ideas and opinions on this matter since diagnosis over nine years ago.

First and foremost, if someone truly loves you, I mean TRULY loves you, IBD, ostomies, scars, etc. WON’T matter to them. Not one bit. Of course there are grey areas and certain circumstances, but bottom line, your mate will be your caretaker, your support group, your cheerleader, nurse, your driver, your confidante, your advocate, your dearest friend. If you don’t have these things, ask yourself why. Because you deserve them. Do you hear me? YOU DESERVE to be loved.

Second, not everyone is cut out to be a caretaker. Honestly, it takes a special person to learn to change an ileostomy bag and sleep in hospitals and go to countless appointments and deal with prednisone induced mood swings. It does. Not everyone is cut out for it. If you don’t think your partner is made for the job, and I mean honestly not made for it, have an honest chat about it. It’s no slight to you. It’s no slight to them. It’s about doing what’s best for both parties.

Third, there are good partners and crap partners, IBD just happens to highlight just how crap a certain partner is. Hindsight is twenty-twenty, but looking back I see how awful, I mean AWFUL my previous relationship was and having Crohn’s just showed me I was wasting my time and emotion. More on that in a bit.

Final point, before I get to the nit and grit of my personal life, don’t give up on love or feel you’re unworthy or that you can do it alone. Certainly, you can do it alone. But should you? If the right person came along, would you be open to it? It know it’s hard to meet people when sick. First, you can hardly get out there and second just when do you bring up your condition? Not exactly a dinner topic. But it can happen. It requires a pinch of effort, dash of bravery, and an ounce of openheartedness to create the right conditions for finding love.

How to know if your partner ISN’T the one?

Oof, hard problem. You would hate to push someone away because of your illness. And you would also hate to make them stay out of guilt. But how do you know it’s right? All I can say is brutal honesty with yourself. If I had been brutally honest, my ex wasn’t worth my time. On my first birthday as a couple he stood me up, wouldn’t answer my calls, and when he did said he had reservations at a restaurant and gave me the time. I met him at said restaurant at said time and said restaurant was closed for the evening. I chalked it up to him being young and distracted as his dad had recently passed. Over the years I chalked a lot of things up to those kinds of excuses.

Then one day I went in for an infliximab treatment and suffered an allergic reaction that required IV steroids and tons of Benadryl. When I woke up feeling like an entire high way of semi-trucks had rammed my head, they told me to find a ride. Of course I called my boyfriend. No answer. I felt so embarrassed in front of the staff. I mumbled some excuse and called again. No answer. I was groggy, sick, and alone. Totally alone. When he finally DID answer he told me he was taking his mom shopping and to call someone else.

Well I was out of it, miserable, and completely upset. Who should I call? I couldn’t think of a name. Not a single name. I have friends to this day I know I could have called then and they would have been there in a heartbeat, but I couldn’t think of their names. I signed a waiver and drove myself home.

And then, five years much too late, I ended it. I cut the cord, cold turkey. He wasn’t happy. He called my friends. Why? Why did he even care? He wasn’t there when I needed him. He showed up hours, and I mean hours late. His own family complained he was always late and it’s disrespectful. He didn’t like we couldn’t go out as much because of Crohn’s. I didn’t much like going out with him and his brother listening to Arabic all night sitting by myself. I speak a second language and I find it rude.

So you see? Outside of IBD, this relationship was total crap. And he wasn’t made to be a caregiver. At least not to me. Honestly, it wasn’t working. I JUST HAD TO BE HONEST with myself, and I think that is the hardest part. The brutal honesty.

Meet my husband. He’s made to be a caregiver. When we met he was a single dad of four kids. What’s a sick wife? Night and day from my ex, sorry to do the comparing bit here. I knew I was loved. I knew I was valued. And I knew I would be cared for. Not selfishly, just knew he was made for this.

Soon after marriage, the “fiasco” as I call it, occurred and he stayed by my side, driving two hours at a time to check on the kids then check on me. We had family close by which helped but he was by my side, learning the names of my medicines, the cords hooked up to me and why, and learning to disconnect them so we would be ready when the nurse could come to help me to the bathroom. No waiting on her to unhook a thing because my husband did it. And if a nurse treated me like a pincushion he spoke his mind. He changed my ileostomy long before I did, prepped the kids and got them all excited before I came home. They thought my little “cherry” looked cool and were happy I was alive.

And this is my point. No one is perfect. Yes, my ENTIRE FAMILY gets annoyed with Crohn’s. “Is Crohn’s putting you in a bad mood? Is Crohn’s the reason you won’t go to the store with us?” I get it. It sucks. IM FRUSTRATED TOO!! But it takes us communicating to sort this frustration out and move on. A good partner will do that with you.

Remember, you deserve love. You deserve to be happy. Don’t settle, and don’t choose to be alone just because you don’t wish to burden yourself on someone else. Hey, if you prefer to be alone, that’s fine, too! Sometimes I think maybe I should just be by myself and not have to let my IBD affect anyone around me. But that’s impossible. I would have to live in a cave. And I hear the toilets there are awful so that’s a no go.

My point is to not sell yourself short, but to be honest and open, knowing what you want and having the courage to go after it. Life sucks enough with IBD. It sucks less when you have someone who loves you that let’s you lean on them from time to time.