#ibdfamily

MOST RECENT

The Raw, Ugly, Real Fight.

Hard to post this but I made a promise to myself when I made this page to no longer remain silent so I may give others the strength to never ever give up.

I am still sometimes in denial I live with this everyday.

I started Remicade infusions about a month and a half ago. Although I am smiling, the process has been anything but pleasant. I was hit with an allergic reaction during both my first and second infusions. Throat closing, itchy ears and my heart rate dropped to 35pbm. I will be premedicating during my next infusion with Medrol and the benedryl IV.

JUST BECAUSE THE FIGHT IS HARD DOES NOT MEAN YOU GIVE UP. This is for any fight you have. Never give up.

Blessed for all those that never left my side or doubted my words. Love you so much.

#nevergiveup #ibdfamily #ulcerativecolitis #ibdwarriors #withoutmyhealthiamnothing #gutfeeling

Hey guys! Thought it would be a great time to re-introduce myself, as I’m happy to welcome lots of new followers! My name is Natalie, I’m a wife to Bobby, mom to Reid and a patient advocate/blogger at Lights, Camera, Crohn’s.

I was diagnosed with Crohn’s disease in July 2005, two months after college graduation, at the age of 21. I spent the first 10 years of my battle suffering in silence, as I was in the public eye working in TV and didn’t want anyone to look at me differently for my chronic disease.

When I left the news desk in 2014, I decided to start sharing my patient journey and have never looked back! I aim to be a voice of hope and inspiration to the millions of people who take on IBD on a daily basis. I share fresh content on my blog every Monday morning. Have a topic or story idea you want discussed, let me know! We’re all in this together. You are never alone in your fears, struggles or concerns. 💜👊🏻

I am so blessed to have the tribe of friends that I have #soblessed#friendship#ibdfamily#ibdsisters#warriors 📷@wordporm

It has been SIX WHOLE MONTHS since my body endured almost seven hours of surgery and I started on this journey with my ileostomy.
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The last six months can’t really accurately be accounted for in just a caption on a giggly photo of myself, or any picture really. This recovery isn’t always an upward slope. I’ve felt so much appreciation for my bag when adventuring around places that, previously, I never would have even dreamed of going to. But, I’ve also looked at my body in the mirror and hated what I saw. I’ve gone from not worrying who could see my bag, to doing everything I can to hide it away - hoping to avoid the confused and judgmental stares of strangers.
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But despite the highs and lows, one thing is for sure - my insides are healthier than they have ever been. For the first time in sixteen years, I don’t have active disease plaguing my delicate digestive system. Six months may seem like more than enough time to recover, but I think it’s okay that I’m still working through everything. It doesn’t always seem like I’m making much progress, but I still get up every morning and do my best to enjoy the day - and I think that’s something to commemorate.

(How to donate below!) Alright, Gang. I’m SUPER late in working on fundraising for the #CCFA, but I’m hoping I’m able to raise a little bit of money before the Take Steps walk THIS Saturday. That gives me about 46 hours to reach my goal. 🙈 This year, my goal is $750 for 7.5 years of illness. (I can’t believe it’s been that long!) I would be so grateful if you guys would consider donating to the Crohn’s and Colitis Foundation! Your money would be funding support groups, Camp Oasis and, most importantly, research to find a cure. ⭐️To donate, click on the link in my bio!⭐️ Thank you so much! 🧡💙
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#spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #ileostomy #stoma #ostomy #surgery #girlswithguts #chronicallymotivated

Had a bit of a meltdown. I like to think that I can handle whatever new medical problem is thrown my way with ease, but that isn’t always the case. I fall apart every now and then just like anyone else. Not being able to drive seems like a small thing - and it is. ....until you want to make a quick run to Walmart or pick up candy at the gas station or go spend some time on your laptop at Starbucks. I live out in the country and Uber isn’t really a thing out here. I am grateful for the people in my life that don’t have an issue driving me around, but it’s maddening knowing that even though I feel okay, I am sick. I was looking over my lab results from my episode on the 8th and nearly everything was above or below normal. Lots of them indicate that I had another seizure. I am just praying that this will only be temporary. Thank you all so much for your love and support. ❤️
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#spoonie #spooniefamily #IBD #IBDfamily #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #ileostomy #stoma #ostomy #surgery #girlswithguts #seizure #encephalopathy #neurology

TEN years + diagnosed with Crohn's. Newly diagnosed?? Please please #reachOut there's a huge #IBDcommunity here and there is so much #youDontKnow about how this #AffectsYourBody it's not #just a #bathroomDisease and some of the #lifeSavingDrugs are nightmares for others #dontGiveUp there are #IBDhacks that can make this go easier. #IBS #IBD #crohns #colitis #IBDfamily five million of us "get it". #pleaseTalk if not to me, then to another one of us. The ability to talk about EVERY #gory detail has been a huge help physically and mentally

Smiling for the weekend! 〰️
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I hope all of you beautiful people enjoy your Sunday and I am sending you lots of love and happy vibes from Florida!
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Also, this skirt is my new favorite. It sits perfectly above my bag and is nice and thin (a necessity when it’s already approaching 90 degrees outside). It’s a second hand piece found and made into a little work of art by @aunt.gwen - go check out her stuff and buy all the cute things!

Let your own light shine bright and clear and let it sparkle but don't extinguish the flames of others 💫🔥 #ibdfamily #keeponkeepingon👊 📷Pinterest

M E A T 🙌🏻 fellow IBDers, do you occasionally eat red meat? How often and how do you prepare it? 💜💜💜

I took.this video for a beloved friend of mine who has stage four terminal cancer and really needs all the positive thoughts and prayers she can get 💜🙏#ginastrong #teamgina #weloveyougina#prayingforamiracle#ibdsistersforlife#ibdfamily

No colon, still rollin! Thank you for this shirt @emjayuc , it sums up my life right now pretty well 🎯Losing my colon was life changing in a negative way, but as crazy as it might sound even more so in a positive way. I have never felt so much appreciation just to be here. I’m still here and I’m alive. I’m alive! 💪🏼
#nocolonstillrollin
#IBDfamily #IBDcommunity #UC #scar #jpouch #ulcerativecolitis #chronicillness #autoimmune #crohns #ostomy #ileostomy #girlswithguts #awareness #resilient #nopainnogain #invisibleillness #surgery #ibdstrong #reversal #excited #life #invisibleillnesslove 📸 @billievannes

Well, it is my last day waking up in the Windy City so I thought I would share some closing thoughts about my little trip and traveling with my ostomy bag.
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Before my surgery, access to restrooms and stomach pain always plagued any time I spent away from home. While I am now free from these worries, leaving home means a new set of obstacles - making sure I pack enough ostomy supplies, trying to eat out for every meal even though I’m still too nervous to try new foods, and changing my bag without my ever so helpful husband who is somehow better at it than I am. (This was all made a little more difficult due to my skin refusing to get along with my ostomy bag these past few days.)
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So, it hasn’t been the easiest; but I am trying to make the most of it. I thrive on a daily routine, and if given the option I will always choose the mountains; so big city life is definitely not my comfort zone. But regardless, I thank you Chicago for all that you offer and exposing me to some new experiences - it’s been quite the adventure but it’s time for me to head home.
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Oh, and even though we didn’t get along very well this trip, thank you ostomy bag for allowing me to walk around a city that is plastered with “No Public Restroom” signs. I couldn’t have done it without you!

Please excuse my wacky movements and crazy eyes! 😂🙈 This is what accessing a port looks like. Doing this at home by myself has been INCREDIBLE. I can let fluids run slowly overnight while I sleep in my own bed and I have the option to keep it accessed if I want to run fluids again the next day. For over 3 years, I have had to go to a hospital to have someone else take care of me. My restrictions on driving since my seizure took a big part of my independence away.... but with home health, I got some of that independence back. ☺️
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#spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #ileostomy #stoma #ostomy #surgery #girlswithguts #chronicallymotivated #selflove #homehealth #mediport #powerport

Grinning at 1,353 feet and 103 floors high! This was a crazy intimidating experience - but also arguably one of the coolest things I’ve ever seen.
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This trip has been full of a lot of things that never would have been doable for me without my ostomy bag. I’ve ridden public transportation without worrying I would need a restroom, I enjoyed a concert amongst 52,000 people and didn’t panic about not easily being able to leave my seat, and I’ve walked around downtown Chicago with no qualms.
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So, even though I may have been feeling pretty down about my bag as of recent, it’s nice to have some little reminders of all the good things this surgery has allowed me to experience for the first time ever. 🏙
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SN: I will always and forever be a fan on denim on denim.

#Repost @briang_cby with @get_repost. As I’m back in the hospital again and this means so much !!! ・・・
Tomorrow is the first big race of the season and I think I'm ready. Sadly a good friend of mine in the community wasn't able to make it to the race after having a flare a couple of weeks ago and ending up in the hospital. We are both on similar journeys to become full Ironmen, while overcoming our disease. So important for us to support each other with whatever battles we are facing. @eric.b.run.29 I know you're going to crush @IronmanLakePlacid, but tomorrow you'll still be swimming, riding, and walking...oops, I mean running with me tomorrow. Continue to feel better bud. @rev3tri @immonttremblant .
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#chronicallybetteryou #chronicillness #triathlon #swimbikerun #spoonie #diabetes #cerebralpalsy #crohns #asthma #cancerawareness #epilepsyawareness #bodyawareness #invisibleillness #chronicdisease #autoimmune #rheumatoidarthritis #ironmantritraining #lymewarrior #lupus #humiranight #ibdwarrior #fibrowarrior #ironmantri #chronicpain #ironmanintraining #spooniestrong #spoonielife #mentalhealthawareness

After 2 months of mindfully taking care of my health, I’m feeling better and was able to go to the Crohn’s and colitis fundraising walk to support my fellow IBD warriors and supporters without feeling the need to leave for emergency.
.....so much fun to be back doing this again with Rocky, my hubby, and friends. 💙🧡🌳🐕🚶🏻‍♀️🚶🏻‍♂️🚶🏼‍♀️🚶🏼‍♀️ #takestepswalk #ccfa #ibdfighter #ibdfamily #ibd #ulcerativecolitis #crohns #inflammatoryboweldisease

Just successfully accessed my port ON MY OWN! 🎉😁 From now on, I’ll be able to get fluids in the comfort of my own home. .
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#spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #ileostomy #stoma #ostomy #surgery #girlswithguts #chronicallymotivated #homehealth

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