#ibdawarenessweek

It’s #ibdawarenessweek and since I’ve had #ibd for 25 years I have a thought or two. This is me with my new #ostomybag and my 7th round of #chemo hooked up ( those of us with #ibd have a higher risk for #coloncancer - just got lucky i guess). Full disclosure, taking this picture was difficult. I’m not one for being open about my disease BUT I also believe you should be the change you want to see etc. #inflammatoryboweldisease isn’t fun or glamorous or easy to talk about but we should. We really should. I grew up feeling very isolated and alone and filled with shame over my illness. And that shouldn’t be. I love #ibdawarenessweek because the more we talk about it the less alone we’ll all feel - and more awareness means more research so maybe one day we’ll be able to stop peoples suffering completely. That’s it I guess - except for a special shout out to @emmabraitling for taking this great shot. Love you💖

Whose ready for #ibdawarenessweek check my YouTube channel, I'll be posting every day til the 7th to spread awareness. #100daysofmakeup #day 81 Link in bio or youtube/user/sarahrae519 https://www.instagram.com/p/CIPaK4dDXWh/?igshid=6woqegedrep5

— IBD AWARENESS — • • Strength! 💪🏻 • • Yes, I know IBD Awareness Week has been over for 3 days... but I missed out on the last day because I was busy having a meltdown over running out of lights for our Christmas tree... 😂 • • Looking back at where I was 5 years ago... I had just quit a job baking/doing what I love most because my body wasn’t allowing me to do it. I couldn’t stand on my feet for a whole day, I wasn’t able to withstand the hot to cold of a kitchen to the freezers or coolers. My Crohn’s was trying to rob me of everything I had worked so hard to achieve. • • But look at me now! 💁🏻‍♀️ • • I am working towards a business of my own baking cakes for birthdays, weddings, etc. I am working a full time job. I am graduating with a Bachelors degree in business management in 11 days. I am on a committee for an event I’m passionate about. I am doing everything and WAY more than I could have even imagined 5 years ago. 💜 • • And even though Crohn’s tried to rob me of the things I love most, it also taught me my own strength and that I am capable of overcoming those obstacles. It taught me how resilient I am. It taught me to not give up. • • So keep on fighting IBD warriors, we’ve totally got this!💜💜 . . . . . . . . #crohns #ibdawareness #ibdvisible #ibdawarenessweek #ibdwarrior #ibd #crohnie #ccawarenessweek #crohnsdisease #crohnswarrior #crohnsandcolitisawarenessweek #crohnsawareness #crohnsandcolitis #colitis #ulcerativecolitis #spoonie #invisibleillness #invisibleillnessawareness #invisibleillnesswarrior #chronicillness #chronicillnesswarrior #strength #quotes #quotesofinstagram #quoteoftheday #strong #warrior https://www.instagram.com/p/B55lvLUgGoS/?igshid=1w8he4u4zacn5

—IBD AWARENESS WEEK— • • So I saw this infographic and I started to wonder what my costs for living with IBD translated to... so I sat down and decided to figure it out. 🤔 • • Health Insurance through my Employer: $6052.32 per year for my family, divided by 3 of us = $2017.44/year for me • + Deductible & Out of Pocket Max: $6,000/year • + Copays for IBD related care (just going to say an average of 8 specialty visits per year)... $360/year • + Short Term Disability I pay for through my employer: $444.88/year • + Long term disability through my employer: $107.10/year • + Prescription costs (only IBD related ones): $2,460 • + Vitamins, Supplements, Etc. due to anemia & other vitamin deficiencies: $720/year • = $12,109.42 • • This is approximately 25% of my entire annual salary. Yes, you read that correctly. I have medical debt piling up because unfortunately, I can’t even afford the deductibles required by my insurance plan. That’s the reality of it. 😔 • • These numbers don’t even take into account my prescriptions for other things...or when insurance deems something unnecessary...or a doctor goes out of network...or in the event I wind up in the hospital. So really this $12k is just a base line... a “best case scenario” for my IBD. • • Unfortunately this is the reality for so many of us. And that is why it’s important to shed light on this devastating issue. We need change. 💔 . . . . . . #ibdvisible #ibdawareness #ibdawarenessweek #ccawarenessweek #ibdwarrior #ibd #ibdsuperheroes #friendswithcrohns #crohns #crohnswarrior #crohnsdisease #crohnsawareness #crohnsandcolitisawarenessweek #crohnsandcolitis #crohnsandcolitisfoundation #colitis #ulcerativecolitis #spoonie #invisibleillness #chronicillness #invisibleillnessawareness #chronicillnesswarrior #autoimmunedisease #finances #financialimpact #healthcare #healthreform #insurance #insurancesucks #spoonie https://www.instagram.com/p/B5uAwoXgPHb/?igshid=1cndtr619f67t

— IBD AWARENESS WEEK — • • All about relationships... • • Relationships are tough enough as it is, but add a chronic illness on top of that and they can be even more of a struggle. However, the people that are meant to be in your life will stay, and those who don’t were not worth your energy and spoons. 🥄 • • Today, I asked my husband, my best friend, and my mom to give me their perspective on being my biggest supporters and caregivers living with IBD. And they did not disappoint. (I went live and shared their full stories if you want to listen.) 😊 • • My husband touched on his fears leading up to my surgery and how he looks out for signs I’m not feeling well even when I don’t say anything. My mom touched on how much awareness is needed and how hard the diagnosis process was/can be and how living so far away from me is difficult for her. And my best friend Katie threw it back to my first ER visit and the struggle of watching me go through something we knew nothing about, as well as the impact it’s had on so many parts of my life. 💜 • • It’s important to remember that although we are the ones physically going through things, our loved ones are going through things mentally for us. 💜 • • I urge you to ask a loved one or two how your disease affects their life and their perspective, I think you’ll be surprised at their answers! I know I was! 💜💜 . . . . . . . . . #crohns #ibdvisible #ibdawareness #ibdawarenessweek #ccawarenessweek #crohnsandcolitisfoundation #crohnie #crohnswarrior #crohnsdisease #crohnsawareness #crohnsandcolitis #crohnsandcolitisawarenessweek #colitis #ulcerativecolitis #spoonie #ibd #ibdwarrior #ibdsuperheroes #friendswithcrohn #invisibleillness #caregiver #perspective #chronicillness #chronicillnesswarrior #chronicillnessawareness #autoimmune #autoimmunewarrior https://www.instagram.com/p/B5rX69PgowI/?igshid=8wn6khd3e7vu

• IBD Awareness Week • • • My name is Samantha and I’ve been diagnosed with Crohn’s disease since 2013. It took over a year for me to get diagnosed after my symptoms started and it was a brutal time. Doctors didn’t believe me, I was told it was all in my head, and therapy was suggested before a GI. 🤦🏻‍♀️ • • Finally after a year and finally getting a GI referral, a GI took one look at all my labs and tests about a year later and literally told me he was 98% sure I had Crohn’s but wanted one more test to be sure. So I did a small bowel series and sure enough... Crohn’s disease. My intestines had been inflamed for over a year at that point and I had already developed stricturing of my intestines. • • In 2017 after a couple years of being miserable with recurrent obstructions and wanting my life back, my GI and I decided to remove the diseased part of my intestines. And honestly I wish I had done it sooner! • • I’m not considered in remission currently but I am so much better than I was prior to surgery and for that I’m very thankful. 💜 • • I love reading about everyone’s IBD journeys and even though they are all different, we are all warriors battling an invisible illness that impacts us and it’s important for the world to see that.💜 So lets keep it up! 🙌🏻 . . . . . . . . . . #ibdvisible #monday #myjourney #ibd #ibdawarenessweek #ibdawareness #ccawarenessweek #crohns #crohnie #crohnswarrior #crohnsawareness #crohnsdisease #crohnsandcolitis #crohnsfighter #crohnsandcolitisawarenessweek #crohnscolitis #crohnscolitisawarenessweek #spoonie #ibd #ibdwarrior #colitis #ulcerativecolitis #invisibleillness #invisibleillnessawareness #chronicillness #chronicillnesswarrior #chronicillnessawareness #purplehair #overtone #crohnscolitisfoundation https://www.instagram.com/p/B5lYvDDALEv/?igshid=byipdpedi6ey

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

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