#myibd

[crazycreolemommy]

Traveling as a mom is not as hard as traveling with a #jpouch. Kids nap, eat and chat your ears off. My Jpouch can be unpredictable with changing of times, air pressure and food options. • I’ve been working on trying to have a more plant based diet. Simply because I grew up eating pretty healthy and the fact that some of that food just doesn’t agree with me any more is pretty painful. I’m also tired of feeling uncomfortable in my skin with the uncontrollable weight gain and weight loss. So I’ve been trying to find healthier, yet #MyIBD safe options to incorporate the not my diet. LAX has some pretty good options when it comes to plant based options. However, I am in the trial stages. Some grains don’t work. Some veggies don’t work. And being on a plane with intestinal issues is not ideal. And because there were so many delays and changes, it was hard to predict when I could have bathroom breaks. So I went with what I know. A plan donut and some water. LOL! • It’s important to know YOUR IBD and what works for you and your body. Being comfortable comes from being educated. And it reduces anxiety and stress. Now all I have to worry about now is making my connecting flight! (at Lax International Airport Los Angeles California) https://www.instagram.com/p/ByD7jzzg5oC/?igshid=455ou82r3ia4

[mere282]

As Crohn’s and Colitis awareness wraps up I wanted to share my personal motivation to keep fighting.... I look at their faces and I’m reminded of how lucky I am to have my family. They continue to inspire me and have motivation to try the next treatment... to get out of bed when I can barely move... to advocate for myself and try to help other moms in my situation. I love the fact they are so close💜 even though there’s more than six years apart. I watched as my 14 year old daughter takes her little brothers hand while trick or treating... because she wanted to make sure he didn’t get lost. My kids are breaking stereotypes about autism every day. Love..affection... empathy.. funny.. caring about those around them..Not exactly what the general public understands about autistic kids. They inspire me to do and be so much more... I often think how things might be different if I didn’t have a family 🤔 I think my life would be different and not in a good way. What is your motivation? My motivation calls me mom #ibdawareness #myIBD #ccawarenessweek #chronicillness #spoonie #autisticpride #motivation #stelara #ibdmom #crohnsdisease https://www.instagram.com/p/BrFaMKEnG1M/?utm_source=ig_tumblr_share&igshid=xd7jqejsgs5v

[crohnicallyfab]

Day 6 of IBD Awareness Week: IBD & Work 💜 • I am super thankful to have a full time job right now. Thankful I feel well enough to work a full time job. There were times in my life that I worked full time but did nothing else but sleep after work because I was EXHAUSTED. 😴 • I’ve had employers or coworkers mention “too many bathroom breaks.” I’ve had people question if I was exaggerating my symptoms to get out of doing things or working. And something most people don’t know, is I gave up my dream up being a pastry chef in part because of IBD. 👩🏻‍🍳 • Straight out of college, I landed a baking job full time and it was amazing. But being on my feet for 8-12 hours at a time was having a huge toll on my body. I ended up in the ER a couple times and realized that everything I had worked so hard for, went to school for, was not going to work out in the long run. It was one of the most devastating decisions I ever had to make, but I ultimately chose to find an office job and focus on my health. 😣 • I’m not sure I’ll ever be able to be a pastry chef that works on her feet for 12 hours a day, but baking still makes me happy and as many of you know, I’m hopefully going to be starting my own cake business, @cakedbyryno in the next year or so. I’ll get to do things on my own time, at my own pace, and as I physically can.🤞🏻 • I’m one of the lucky ones. My disease has let me have a job and slowly, VERY slowly work towards my goals. Other IBD warriors cannot do this. And my heart breaks for them. We didn’t choose to have IBD, but we just try to live our best life with what we’ve got!💜 . . . . . #myibd #ibdvisible #ibd #ibdawareness #ibdawarenessweek #ibdwarrior #ibdsuperheroes #crohns #crohnsdisease #crohnsawareness #crohnsdiet #crohnswarrior #crohnsandcolitisawarenessweek #colitis #ulcerativecolitis #spoonie #invisibleillness #chronicillness https://www.instagram.com/p/BrEg01knnvt/?utm_source=ig_tumblr_share&igshid=q78cyyqdkmb1

[crazycreolemommy]

My day is a little booked! Watch my briefing live on the @crohnscolitisfoundation Facebook page at 12pm est. Facebook.com/ccfafb #ccawarenessweek #myibd #ibdonthehill #IBDMoms #crazycreolemommylife (at Hart Senate Office Building) https://www.instagram.com/p/BrDZN8iAvF-/?utm_source=ig_tumblr_share&igshid=158swvtcre2kg

[crohnicallyfab]

Day 5 of Crohn’s and Colitis Awareness Week: Trigger Foods & Diet 💜 • I miss things. Like jalepeno poppers, shamrock shakes from McDonalds, raw peaches, a tall glass of regular milk, and Taco Bell. It’s probably been at least a couple years since I’ve chanced any of those items. Might sound weird to a normal person... but these are some of my trigger foods. The foods that make me so sick that I regret them way more than enjoyed them. 🥴 • Before I had surgery, my list of trigger foods was pretty much indefinite. My only safe foods were bananas, plain rice, applesauce, white bread, mashed potatoes, and mashed sweet potatoes. Lettuce? Forget it! Things with seeds? Forget it! Dairy products? Never! 🙅🏻‍♀️ • Keeping a journal of what I ate helped narrow down what was causing me pain. There’s apps now too to help people with that! I’m thankful I’ve been able to expand my diet so much again since my surgery, but there are still days I get annoyed. It’s annoying I can’t just go get a fricken Crunchwrap supreme or make and eat a bunch of jalepeno poppers. But this is the hand I’ve been dealt. 😶 • I’ve tried many different diets over the years. I feel best when eating a Paleo diet (anything a caveman would eat!) But when you have a 4 year old and a husband who craves dairy, gluten, etc. it gets pricey to be buying two different types of food. Currently there are clinical trials going on to see if a low FODMAP diet will help with IBD symptoms and I am very excited to see the results of that trial when it’s finished! Even though there’s no cure, I’m all for helping with symptoms!🙌 • And most importantly, EVERY BODY IS DIFFERENT. What triggers me, might not trigger someone else with IBD. A diet that helps me might make someone else feel worse. This is one of the reasons controlling IBD is so difficult because we all have unique experiences. 💩 . . . . . #ibd #myibd #ibdvisible #ibdawareness #ibdawarenessweek #crohns #crohnsdisease #crohnie #crohnswarrior #crohnsdiet #crohnsawareness #crohnsfighter #crohnslife #triggerfoods #ulcerativecolitis #uc #colitis #spoonie #invisibleillness #chronicillness https://www.instagram.com/p/BrCEb_2HZSJ/?utm_source=ig_tumblr_share&igshid=1m28zrtdl81jh

[mere282]

IBD is So much more than a bathroom disease.. I finally gave in a few years back and got a port for Entyvio infusions and home hydration. Fast forward three years and I’m inpatient with a line infection our best guess was 🤔 I’d been exposed to the bacteria during a hospital stay. I was away from my family for six days as the doctors tried treating my infection. Only to lose my port the following week and left with an open wound and a picc line for another few weeks of IV antibiotics. Ibd patients are more prone to infection from the meds we take and interventions needed for treatment. No two patients are the same in their disease path this is #myIBD #chronicillness #ibdawareness #ccawarenessweek #spoonie #butyoudontlooksick #ibdmom #entyvio #hydration #centralline #crohnsdisease https://www.instagram.com/p/BrB_2gRnB4v/?utm_source=ig_tumblr_share&igshid=19qhq6wwr7q5x

[crohnicallyfab]

Day #3 of Crohn’s & Colitis Awareness Week 💜 • Insurance... something I’m extremely grateful for, but also despise. 😐 • To put things into perspective, I’m a family of three and I am the only one with any major health concerns. We pay about $700/month for our current insurance through our employer. Our deductible is $10,000 per year and once we hit our deductible our insurance covers basically 80% after that, we still owe 20%. If you are doing the math... you can see how things add up. I’m currently about $12k in the hole with medical bills. I pay what I can when I can.🤷🏻‍♀️ BUT YES. I carry insurance. • Here’s what else people don’t always understand with IBD and many other illnesses. Even if our doctor feels something is 100% necessary... insurance can deny it. I was denied Remicade until I failed Humira. After having an allergic reaction to Humira, it took about a month for my insurance to approve Remicade. Once Remicade failed, it took THREE AND A HALF months for my insurance to approve Stelara. I’ve been denied certain steroids, different antibiotics, and even procedures related to my Crohn’s disease. 😥 • So when you hear us talk about how much of a headache insurance is... WE AREN’T KIDDING. 😣 • I’m thankful for it, but sometimes it really does cause me pain both mentally and physically. 🤦🏻‍♀️ . . . . . . . #ibdvisible #ibd #myibd #insurance #ibdawarenessweek #ibdwarrior #spoonie #crohns #crohnsdisease #crohnswarrior #crohnsawareness #crohnsfighter #crohnslife #colitis #ulcerativecolitis #chronicillness #invisibleillness #chronicillnesswarrior https://www.instagram.com/p/Bq8c4lmncoK/?utm_source=ig_tumblr_share&igshid=87iassxbtmj0

[crazycreolemommy]

This is #MyIBD story...well the short version. But I am so much more. I’m a mother, a daughter, a sister, niece, friend, cousin and lover. I’m an artist, a coach, a writer, an advocate and lobbyist. I’m complex human with simple needs. I’m a fan and foe. I am hilarious, stubborn, smart and loving. I’m a patient and caregiver. I am me. I am you. I am #IBD. • • • • • • • • #ccawarenessweek #ibdmoms #ulcerativecolitis #crohns #jpouch #ostomy #momlife (at United Nations) https://www.instagram.com/p/Bq6P-BjA_rd/?utm_source=ig_tumblr_share&igshid=osytjmttebr9