#ibdfamily

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Best weekend with the best peopleโค๏ธโค๏ธ๐ŸŽ‰๐ŸŽ‰ #ibdfamily

How do you do the gardening when you're at high risk for skin cancer? A UV blocking shirt and a headband to cover the part in your hair. It really hurts to burn your scalp! ๐Ÿ˜Ž Cover up in the sun my #IBDFamily! #IBD #skincancer #UC #Crohns

Well this is definitely more painful than last time! I sassy is gone and there was no replacement!! I have a catheter,rectal tube, and a jp drain. I had 3 ivs now I'm down to 2. I have only had 2 heparin shots so far and check out that bruise, it looks worse than it feels! Pray pray pray for me!
#nocolonstillrollin #jpoucher #postsurgery #nopainnogain #ibdfamily #heparin @samuelblakerson

I've been away from this account for the past few weeks, so coming back to learn that this beautiful soul has left this world made my heart sink. #rememberingmartine
I had the honor of interviewing Martine on my blog 4 years ago, and I'll be making that the homepage for a while for anyone who wants to read. She gave some great words of wisdom and advice for coping with #chronicillness. She was one of the first people I connected with out here in the #ibdfamily cyber world and became a huge part of my support system. We shared a love of our furbabies, Henry and Sam, and I know Henry is truly missing his momma. She was the person who connected me to yoga to help heal my body, along with food and medicine. Martine was determined, funny, and caring. She shared her passion for cooking, love for her husband, her dog and learning with everyone out here, and was so kind. I will really miss her sweet messages of encouragement. My heart goes out to her husband and family, and I'll be keeping her in my thoughts for many years to come. For now, I'm playing some Vampire Weekend in her honor and will be snuggling my husband and dog a bit harder tonight. #restinpeace

Venham transformar o Direito das Famรญlias #ibdfam #ibdfam2017 #ibdfamily #afeto

9 months ago, when I was diagnosed with Ulcerative Colitis I thought the world I knew will not be the same anymore. There was (and still is) so many questions and things to learn. If I wanted or not I was in for a bumpy ride... Luckily my loved ones were all aboard with me to help meย conquer this illnessย and did not allowed me to feel like the disease can define me.
I decided to join #TeamChallenge with @crohnscolitisfoundation , speak up and run a half marathon to make #IBDvisible , to be part of the support system for all those with IBD and most of all to prove that diseases can make you weak, but they cannot break you ! Thank You for all the sweet messages and sharing your stories for past 2 days. Stay strong ! ๐Ÿ‘Š๐Ÿผโ™ฅ๏ธ #TCfamily #IBDwarrior #IBDfamily #colitis #invisibleillness #awarness #halfmarathon #healthyGuts

When I first got sick 6 1/2 years ago, I was so alone. I had love and support, but no one around me really knew what it was like to be sick. I was also new to all of this. I didn't even know what an ileostomy was let alone how to take care of one. ๐Ÿ˜ฌ I did my best to find other patients to talk to, but I only found two or three across the country. A few years later, I started using Instagram. ๐Ÿ“ท I didn't talk much about my health problems for a long time, but I'm so glad I decided to share my story. Today, my account hit 4000 followers! โ˜บ๏ธ๐Ÿ’•That's 4000 people (mostly strangers) that care about how I'm doing. That's nearly the population of the town I grew up in! ๐Ÿ‘ฅ I receive direct messages and comments daily from people of all walks of life: a nurse that wants me to know I've opened her eyes to the receiving end of medical care, a 14 year old girl that told me I inspire her and make her feel more confident with her scars, completely healthy people that just want to learn more and people from all over the world that just want to let me know that they are pulling for me. ๐ŸŒโค๏ธ It isn't my intention to brag about being an inspiration or to boast about the number of followers. I want to say THANK YOU and that I'm extremely humbled by all of you. I'm not sure that I believe in a god, but I believe that everything happens for a reason. I'm almost exclusively happy and optimistic, but I'm like anyone else - I'm not bulletproof. Every once in a blue moon, I'll break and wonder, "Why? Why me?" ....until I read a comment or message from one of you. If even one person feels more confident or if I can educate someone, this will all have been worth it. ๐Ÿ˜Š๐Ÿ’œ (Also, please know that I do read EVERY comment and message. I try to respond to as many as possible, but please know that I do see your comments and they matter to me - even if I don't reply.) โค๏ธ
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#spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #jpouch #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts #chronicallymotivated

MOST RECENT

Oh, hey. That's me in your inbox or your mailbox! ๐Ÿ’œ No one should face this disease alone.
I found out this week that my old GI office will not accept CCFA materials or resources to provide to new patients. I find this unacceptable and in need of change. So I fight. And I advocate. And I wait on hold for 30 minutes until they drop my call. And I call again on my next lunch break. Don't let another person wake up like I did and be told they have no cure and be left without hope. Patients need your support. Donate today. @crohnscolitisfoundation #flareuphope

Today was my follow up with my surgeon and I have been a wreck off and on ever since. He checked out my incision and even though it's sore, he said it was healing "beautifully." Barring any other complications with my ileostomy, I'm done. No more surgery. DONE. This is absolutely surreal. I'm crazy happy! Today, my life was handed back to me. For the first time in 6.5 years, I'm able to plan for school and not worry about an upcoming surgery. But, as happy as I am, this is a little bittersweet. My surgeon and the residents have become a sort of second family. They've taken care of me for years and all of a sudden, I'm not going to see them anymore. My reality has been hospitalizations and surgeries and my life has been on the back burner. Today, that reality completely shifted. It's sad, wonderful, exciting and terrifying all at the same time. I've waited years for the day that I could really work toward my future without my health holding me back. But for as many times as I pictured how this would feel, I never anticipated feeling remotely sad (or that I'd cry this much ๐Ÿ˜ญ๐Ÿ˜‚๐Ÿ™ˆ). The last 6.5 years have meant more to me than I ever thought they would. I'm not exactly sure how my life is going to go from here on out, but the least I can do is make my surgeon proud like he asked me to. โค๏ธ
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#spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #jpouch #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts

9 months ago, when I was diagnosed with Ulcerative Colitis I thought the world I knew will not be the same anymore. There was (and still is) so many questions and things to learn. If I wanted or not I was in for a bumpy ride... Luckily my loved ones were all aboard with me to help meย conquer this illnessย and did not allowed me to feel like the disease can define me.
I decided to join #TeamChallenge with @crohnscolitisfoundation , speak up and run a half marathon to make #IBDvisible , to be part of the support system for all those with IBD and most of all to prove that diseases can make you weak, but they cannot break you ! Thank You for all the sweet messages and sharing your stories for past 2 days. Stay strong ! ๐Ÿ‘Š๐Ÿผโ™ฅ๏ธ #TCfamily #IBDwarrior #IBDfamily #colitis #invisibleillness #awarness #halfmarathon #healthyGuts

Today hasn't gotten off to great start. We finally got an appointment for my first Stelara infusion only to have to cancel it. Insurance is still pending on approval... Luckily we were able to reschedule it for next Friday, but I'm still so disappointed and sad. I know it's only one more week, but I was so excited to start this new medicine. Oh well... just have to pray that insurance picks up the pace. ๐Ÿ˜•๐Ÿ˜” #crohns #crohnsdisease #IBD #inflammatoryboweldisease #ibdfamily #autoimmunedisease #chronicallyill #chronicillness #stelara #newmedicine #disappointed #flowers #yellow #yellowflower #itspretty

When I first got sick 6 1/2 years ago, I was so alone. I had love and support, but no one around me really knew what it was like to be sick. I was also new to all of this. I didn't even know what an ileostomy was let alone how to take care of one. ๐Ÿ˜ฌ I did my best to find other patients to talk to, but I only found two or three across the country. A few years later, I started using Instagram. ๐Ÿ“ท I didn't talk much about my health problems for a long time, but I'm so glad I decided to share my story. Today, my account hit 4000 followers! โ˜บ๏ธ๐Ÿ’•That's 4000 people (mostly strangers) that care about how I'm doing. That's nearly the population of the town I grew up in! ๐Ÿ‘ฅ I receive direct messages and comments daily from people of all walks of life: a nurse that wants me to know I've opened her eyes to the receiving end of medical care, a 14 year old girl that told me I inspire her and make her feel more confident with her scars, completely healthy people that just want to learn more and people from all over the world that just want to let me know that they are pulling for me. ๐ŸŒโค๏ธ It isn't my intention to brag about being an inspiration or to boast about the number of followers. I want to say THANK YOU and that I'm extremely humbled by all of you. I'm not sure that I believe in a god, but I believe that everything happens for a reason. I'm almost exclusively happy and optimistic, but I'm like anyone else - I'm not bulletproof. Every once in a blue moon, I'll break and wonder, "Why? Why me?" ....until I read a comment or message from one of you. If even one person feels more confident or if I can educate someone, this will all have been worth it. ๐Ÿ˜Š๐Ÿ’œ (Also, please know that I do read EVERY comment and message. I try to respond to as many as possible, but please know that I do see your comments and they matter to me - even if I don't reply.) โค๏ธ
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#spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #jpouch #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts #chronicallymotivated

Ready to raid the vending machine for junk food! ๐Ÿญ๐Ÿ˜‹ Barring any unlikely complications over the next 12 hours, I will be going home tomorrow! ๐Ÿ˜„ This hospital stay will have been less than a week long and I'm actually really surprised at how well things are going! During my surgery consult, I was warned that this surgery and recovery were going to be a bit rough. I had no idea what to expect, but I didn't want to get my hopes up that things would go better than expected. I have 6 abdominal incisions and I hardly feel those anymore. The only incision that really bothers me is the one where my anus used to be. I haven't sat down on my bottom in nearly a week and I'm a little terrified to. The tissue down there is super delicate and a common complication is wound breakdown - so I'm going to do everything I can to let it heal in peace. I'm a little bummed that I won't be able to go out tomorrow to see fireworks, but I'm so thankful this surgery is finally done. I know this is so clichรฉ, but today really is the first day of the rest of my life. It's like a chapter is closing and a brand new one is opening up. I can't wait! โค๏ธ
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #ulcerativecolitis #crohns #jpouch #jpouchremoval #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #ileostomy #stoma #ostomy #surgery #girlswithguts #buzzcutgirl #buzzcut

Monday evening comes around a bit too quickly for my liking ๐Ÿ˜ƒ
#ibd #crohnsdisease #colitis #ulcerativecolitis #colitissucks #humira #humirapen #injections #ibdfamily #spoonie #spooniesunite

My newest hospital-stay trinket from my mom! I love it! ๐Ÿ’• My mom likes to switch it up from balloons or flowers and she usually finds a neat trinket in the gift shop every time I have surgery. โ˜บ๏ธ I am unbelievably lucky to have the mom that I do. When I'm sick, she devotes as much time as possible to being with me at the hospital. For the first day or two after surgery, she'll stay with me through the night just to help me get out of bed or to call the nurse if I start to get sick. Mom, I know we don't always see eye to eye, but having you here means everything to me. I love you. โค๏ธ @elkepeters
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#ILoveMyMom #spoonie #spooniefamily #IBD #IBDfamily #ulcerativecolitis #crohns #jpouch #anemia #portacath #powerport #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #ileostomy #stoma #ostomy #surgery #girlswithguts

I've been away from this account for the past few weeks, so coming back to learn that this beautiful soul has left this world made my heart sink. #rememberingmartine
I had the honor of interviewing Martine on my blog 4 years ago, and I'll be making that the homepage for a while for anyone who wants to read. She gave some great words of wisdom and advice for coping with #chronicillness. She was one of the first people I connected with out here in the #ibdfamily cyber world and became a huge part of my support system. We shared a love of our furbabies, Henry and Sam, and I know Henry is truly missing his momma. She was the person who connected me to yoga to help heal my body, along with food and medicine. Martine was determined, funny, and caring. She shared her passion for cooking, love for her husband, her dog and learning with everyone out here, and was so kind. I will really miss her sweet messages of encouragement. My heart goes out to her husband and family, and I'll be keeping her in my thoughts for many years to come. For now, I'm playing some Vampire Weekend in her honor and will be snuggling my husband and dog a bit harder tonight. #restinpeace

TODAY is the next installment of the #IBDSC Twitter chat! Join us (Ryan, Kay, me, and others in the community) at 1:00pm EST (that's 6:00pm U.K. time) to talk Patient Empowerment and what that means to you! Share your Patient Empowerment knowledge and stories with us and the community, and we can all continue to learn from and with each other! ใƒปใƒปใƒป #hcsm #mhsm #IBD #Crohns #ulcerativecolitis #colitis #INDcolitis #ostomy #jpouch #Doctorsappointment #surgery #resources #patientempowerment #empoweringpatients #autoimmunediseases #inflammatoryboweldisease #autoimmune #diseases #IBDSocialCircle #IBDfamily #ostomyfamily #knowledgeispower

Situated in my room! ๐Ÿฅ I was in recovery for ~2 hours to make sure my pain was controlled before transport took me to my room. My surgery was scheduled for 5 hours, but my lack of scar tissue made it easier for Dr. Tsoraides to free up my J-pouch and remove it. Overall, the surgery only lasted 2-3 hours! I was a bit worried about them sliding me from the gurney to my bed upstairs, but it really wasn't too painful. However, they used A LOT of lidocaine during surgery and I'm pretty numb. Dr. T told me it was going to be a rough surgery so I'm NOT looking forward to when the lidocaine wears off. I have 5 incisions on my abdomen and my bum is covered in gauze and tape. I was also told that the complication of wound breakdown where my anus used to be is about 50%. ๐Ÿ˜… This recovery isn't going to be easy by any means, but I am going to do what I can to get back into class this fall. In the meantime, I could use a few good thoughts from you guys. Thank you so much for all of your continued love and support. It means the world to me and you give me the confidence and strength I need to keep pushing through. ๐Ÿ’œ
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#spoonie #spooniefamily #IAUIBD365 #IBD #IBDfamily #GERD #ulcerativecolitis #crohns #jpouchremoval #nocolonstillrollin #chronicpain #chronicillness #invisibleillness #autoimmunedisease #jpouch #ileostomy #stoma #ostomy #surgery #girlswithguts #buzzcutgirl #buzzcut

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