I've decided to submit with this photo and another one for 2018 calendar entries of @stomawise. Honestly it was a big step showing my bag to the world.. it's my reality, it's my new life and I am happy and thankful for having this bag which really saved my life, so why should I be ashamed of showing it? I am trying to live my life as normal as possible, and most of time it's normal...my bag doesn't prevent me to do the things that I like. I keep my smile on my face and I am happy, first step to be happy is the acceptance.
#stomawise#2018calendarentries#abcd @stoma #colostomy#empowering#ostomy#life#happy#crohns#colits#doencadecrohn#ostomybag#ostomyconnection
One year ago today, I spent the entire day in bed. I had woken up at 5:30AM with diarrhea that occurred every 10 minutes for two hours straight. My stomach felt like it was on fire, and I couldn’t even stand up straight because of the pain. After taking more than the recommended amount of Imodium, things finally calmed down, though my pain still wouldn’t let up. I kept sending frantic emails to my professors letting them know that I wouldn’t be in class the next day, fully convinced that I had gotten food poisoning. The biggest worry on my mind at that point was that I was missing a day of training for my race that weekend, and that spending the day in bed would mean I wouldn’t perform as well. I went to bed that night praying that I would wake up feeling well enough to go to the gym and get some homework done, but since I could barely stomach the half of a banana and single cup of chicken broth that I force-fed myself as my only food for the entire day, things didn’t look promising. But hey, I was feeling optimistic, even though I had managed to take a grand total of 100 steps all day ... #mollyollyostomy#ileostomy#ostomy#chronicillness#invisibleillness#spoonie#nocolonstillrollin#ostomates#stoma#ittakesguts#girlswithguts#chronicallymotivated#posturalorthostatictachycardiasyndrome#POTS#dysautonomia#EDS#EhlersDanlosSyndrome
In bed with the worst pressure migraine and just finished dealing with a stoma bag leak that showed an upsetting new development around my stoma...
Looks like an ulcer is starting to form or it’s a fistula - either way this isn’t looking too good for me and probably means going to hospital.
I’m so upset and stressed. It’s so sore too.
If it is another ulcer like the one I had NY 2016 I don’t know I could do and go through all that again it was horrible. I hate this, I hate your body decaying right before your eyes. I just hate all of this some days.
So scared and already called my stoma nurse who is talking with palliative care. In the meantime I’m trying my best to rest my head feels under pressure and I am so tired.
#cancer#ostomy#onedayatatime#stomaissues#pressuremigraine#terrified#whatnow#exhausted @chatterbox_city heat pack wheat free
Meet the leadership team of the CIDA Foundation that helped create and implement the one-of-its-kind Health Advocacy Summit! (Pictured left to right)
Hannah von Werder: Social Media Liaison
Janesh Karnati: Community Relations
Sneha Dave: Executive Director and Founder
Jennifer Meyer: Regional Coordinator
Shahin Saberi: Regional Coordinator
Rosie Maharjan: Media Executive (not pictured)
More photos from our #OstomyDay2017 winner @mollyollyostomy #Iamresilient at our Durham ostomy 5k location.
Ostomy Awareness Day 2017 ! To celebrate, I spent the morning at the Run for Resilience 5K, which is an annual walk to raise awareness for ostomies. What an amazing event. I got to show off Olly to the world, talk to a ton of fellow ostomates about their stories (shoutout to @stolencolon and @stealthbelt VP, @collinjarvis !), and celebrate the surgery that gave me my life back. There is such a strong ostomy community out there, and seeing so many people come together today, from ostomates to family members to nurses to everyone in between, was truly awe-inspiring. One of the coolest parts of the day was that looking around, I couldn’t tell who was an ostomate and who wasn’t. Us ostomates look just like everyone else, and we can do anything we put our minds to.
Speaking of which, I managed to walk the whole 5K without stopping, AND I ran the last few feet in to the finish line. I have crossed a lot of finish lines in the last few years, but today’s finish was particularly sentimental. I remember lying in my hospital bed, setting this 5K as my goal and thinking it was impossible. But today, I crossed that finish line with my head held high and some of my favorite people by my side cheering me on. My parents and my honorary sister / brother-in-law / niece / nephew all walked with me every step of the way, just like they have for the last three months. I’ll be back next year to run the whole thing (I refuse to let POTS stop me !) and I’m already counting the days until Ostomy Awareness Day 2018. #mollyollyostomy#ileostomy#ostomy#chronicillness#invisibleillness#spoonie#nocolonstillrollin#ostomates#stoma#OstomyDay2017#OstomyAwareness @uoaa_ #POTS#posturalorthostatictachycardiasyndrome#dysautonomia#EDS#EhlersDanlosSyndrome
💙💩A lot of people see ostomies as a negative thing, and maybe feel sorry for people who have them.... but I can say wholeheartedly, (even with all the other crap my body is putting me through) I have never felt more myself in my whole life than I do now. And the possible negatives of living with a stoma are nothing compared to all the positives 🍓💩💙
🙏🏼💛✨🍃Have you ever wished you knew how to #recognize#signs from #Spirit ? Have you ever wondered how to recognize #signsfromabove ? Have you ever received a sign from a loved one in #Spirit ? • Then I invite you to join my NEW FB GROUP! • “Recognizing The Language Of Spirit” • Link to join is in bio! Come on over and be a part of a BEAUTIFUL community of supportive, kind and fun loving individuals! I hope to see you there as I’d LOVE to have you #joinus 🙏🏼🍃💛✨#spiritjunkie
☀️ HICKMAN LINE SCARS ☀️
The dressing that I had to wear for 24-48 hours after my Hickman line was removed is off and all I am left with is a little scar (and another story to tell).
The anticipation of having my Hickman line removed has always been worse than the actual removal. The doctor will first cut the stitches, then you will lie flat on your back, take a deep breath, and on your exhale, hum, and the doctor pulls the line out. I always feel a slight bit of pressure on my collar bone where the line was tunneled under the skin to, as well. The doctor then holds a lot (a LOT) of pressure on the area for 10-15 minutes to ensure there is no bleeding. As scary as the procedure always seems, it is never as bad as it sounds! And it is over before you know it ☺️
Being central line free feels so nice! It is always scary at first, though, because I worry about becoming dehydrated and needing the line again, but I just have to let go of my worries and trust my body!
O semblante tranquilo de quem teve alta após 18 dias de internada!
Página virada. Upei! Deu-se início à uma nova campanha na minha vida rs
Houveram diversas intercorrências. Foi um leão por dia, um dia de cada vez. Adaptação da alimentação, muitas dietas zero até ocorrer aceitação e recuperação do Godofredo, meu intestino lindelgado kkkk
Mas quem tem família e amigos tem tudo, e nunca estive só. De acordo com a equipe de enfermagem do HUGG, eu era a menina dos acompanhantes infinitos kkkk
Obrigada família e amigos por ficarem e estarem sempre comigo, pelo amor, ajuda, carinho e cuidado. Obrigada pela torcida dos demais que não puderam me visitar, mas que todos os dias me mandavam mensagem pra saber como eu estava.
Ivan, momeu, obrigada por tudo. Não tenho palavras pra expressar o quanto te amo e o quanto sou grata por tudo que você fez e faz por mim todos os dias. Na saúde e na doença 🙏💜
Sogrãe, minha sogra mãe, te amo muito. Que pessoa incrível você é. Obrigada por tudo ❤
Ba, obrigada por todas as suas pesquisas, você é ótima nisso 💙
Gratidão pela equipe de médicos e de enfermagem do HUGG que cuidaram tão bem de mim, aquele tratamento humanizado que todo hospital deveria ter.
Por fim, podem me convidar para churrascaria, rodízios e afins viu?
Não foi fácil, mas acabou. Ileostomizada temporariamente, saudável e feliz! "I'm a survivor, i'm not gon give up
I'm not gon stop, i'm gon work harder
I'm a survivor, i'm gonna make it
I will survivor, keep on survivin' "
Some of you guys already know, I can't live without my shapewear! 🤗
These undies are not the most sexy, comfy or pretty, but for me they are my world! 🌐
When I started to wear these shapewear undies the possibilities were endless in regards to the clothes I could wear again.
No more 'bag bulging' above jeans, no more annoying heavy bag on my belly.
Even no more noises from my ileostomy because air doesn't have to room (works the same way as placing your hand over your ostomy when it makes sound). You can buy these undies at almost every lingerie store and Primark and such! I wear them pretty tight, but not oncomfortabel tight!
I honestly can’t even explain how tired I am at the minute. Fatigue is like all the energy in your body has leaked out and been replaced by lead weights. Doing one thing at the minute means days in bed recovering and man, it is getting me down. Im lucky I work from home and can lay on the sofa whilst I work but I’m really struggling and so fed up. No one seems to have any answers to why I feel so drained nor can they offer a solution. I wish I could explain to anyone who thinks people with fatigue are lazy, I try to explain to my husband (who doesn’t think I’m lazy!!!) by asking him to imagine a stinking hangover teamed with having just run a marathon... #fatigue sucks 😩 #IBD#ulcerativecolitis#ostomy#ileostomy#tiredaf#tiredallthetime
Only one more day until the crowdfunder is launched on @crowdfunderuk 💥🚀🌎
✨ So you may ask what is it all about, well Jasmine Stacey Collection has reached a point whereby we need added funding to be able to continue what we love to do best which is design, manufacture and empower men/women with stoma's, stretch marks and any body confidence issues. ✨ We are a brand which focuses on body positivity in lingerie looking at comfort, intimacy and luxury fabrics to ensure your experience makes you feel 1 million dollars and acts a springboard to your acceptance journey. ✨I am releasing two new collections tomorrow for pre-order at a whopping 50% off with some really special experiences thrown in.
My early #mcm . I never take for granted having a husband that not only prays for me but with me. Where 2 or more are gathered in his name God is there. Going in for some big medical decisions tomorrow. Very nervous but I see Gods mercy in my life every time those blue eyes smile back at me, those big arms wrap me up and he prays over me with a kiss on the forehead and Amen. #blessed
One year ago today, I ran 10 miles in training for my upcoming Spartan Race in Dallas. I was planning on flying out to Texas five days later to race with Thomas, so I knew I needed a new racing shirt. I went out to buy a shirt, and texted Thomas that I looked really bloated, almost like I was pregnant. I chalked it up to weird body perceptions, and didn’t think much of it. I went home and ate dinner, not feeling good at all in my stomach, again attributing it to nervousness and stress. I told Thomas that night that I didn’t feel great, but that I wasn’t worried because I never got stomach bugs. Little did I know that October 22 would become a day that will always have significance to me, because it’s the day that my digestive system truly started to fail me.
I had limped along for two decades, but a perfect storm had been brewing and just waiting for the right time to strike. For the next sixteen days, I’ll be remembering what happened this time last year, and I figured it would be the right time to talk a little bit about the “incident” that started it all. There are some real gems of pictures (as well as a pretty solid post-anesthesia video) coming your way in the coming days. So don’t worry - I’m not back in the hospital - I’m just trying to share a story that a lot of you haven’t heard before. Stay tuned ... #mollyollyostomy#ileostomy#ostomy#chronicillness#invisibleillness#spoonie#nocolonstillrollin#ostomates#stoma#girlswithguts#ittakesguts#chronicallymotivated#posturalorthostatictachycardiasyndrome#POTS#dysautonomia#EDS#EhlersDanlosSyndrome
Ready to take on step 2 of the jpouch process 💪🏻
Arrival time is 6 am tomorrow and boy am I’m ready to get this over with - only thing to do until then is take a bunch of antibiotics and wait...
Hoping for no unexpected hiccups and that everything goes smoothly🤞🏻I’ll be sure to provide updates as soon as I can!
I missed the best years of my life to Ulcerative Colitis. While all my friends were getting University degrees and travelling the world I was fighting a losing battle with body. Since regaining my health after surgery my priority has been to just have fun. I wanted a year dedicated purely to saying ‘yes’ to everything I once couldn’t. Lately, I’ve been receiving comments from strangers saying they wish they were me. At first it really upset me because I knew I was being judged on what I looked like without any knowledge of what I’ve been through. Now I just remind myself not to take it personally - people make assumptions based on the chapter of your life they walk in on. Little do they know I'm hiding a bag of poo under my clothes! Having an invisible illness has really taught me to never judge anyone on how they appear, and to never wish you were anyone but yourself. We’re all fighting our own silent battles that others know nothing about.