I need to finish this. I’m really finding colouring really relaxing after work. Big test is tomorrow, 1st 8 hour shift in 3 years tomorrow. I’m hoping everyone will be kind to me.
I’ve given in and asked for some support wear for my stoma. Because it aches after a while, stood on my feet.
I really didn’t want to ask for support wear for my ileostomy, because it makes me feel like I’ve got a disability when I haven’t. I’m still Rebecca! I’m not just a stoma and no colon. I’m a actual person, with feelings. #comingtoterms#stoma#ileostomy#nocolonstillrollin#colouring#calming
Today we went for my first actual walk since being reconnected. I have been wanting to walk but the cramping has been so had the past two weeks with just getting around the house I was afraid to do more. Especially since I've got two little dudes relying on me.
But Tuesday night my surgeon called to check up on me and I was able to ask him if the pain and cramping was something I need to push through or a sign that I need to rest a bit. He said push through it! He said my intestine will take a year and a half to fully adjust to everything he did to it.
So today even though it's later and I was already having some intense cramping, I bundled my babies into the stroller and we went for a walk in the snow. And we did great! It wasn't as bad as I had been anticipating and I actually feel pretty great after getting back.
Just a quick walk around the block but it's a start! Tomorrow we will try for a bit farther. Today the fresh air felt glorious and I'm so glad I pushed to take this next step!
The first picture is of me before I left the house to go to Sam's Club. The second is after unloading the truck that was full of groceries and a shower. The last one I have no energy left because I didn't take my powerchair with me and I walked the entire time. When I am in public I always hide my pain, bag, and illnesses as best as I can.
I’m running on fumes y’all ... the ONLY thing keeping me going right now is pure determination.... I’m worn out but I can’t wait to step on the stage again! 15 days! @chopshoplive @jennpattersonrealtor @justaddbronze @jewellcustombikinis
💜So, Crohn’s Disease stinks. Just sayin’, but it has messed with the wrong chick. It has been 3.5 months since my surgery, and had to go back to my friend, my colorectal surgeon yesterday. Philip and I were there chatting with him about the one wound that I still have an issue with, next thing I know he is ordering a CT scan at Mission. Drumroll please: I have an abscess, it needs to be drained and the reason that this last wound won’t heal ‘shows the severity of my disease’. It had done so much damage to the tissue, that is having a hard time healing. Damaged tissue will not bind to damaged tissue. This is where the other part will probably come in...reopen the wound, do something (too TMI to explain)...pack it and wait to heal from inside out. Sounds lovely! Philip and I are ready to face this. He is such a good man. Crohn’s needs more awareness. Most nurses say, ’gosh you are so young to have been so sick.’ Well, apparently 42 isn’t too young...there are many many much younger people, children who are diagnosed with Crohn’s. I am going to fight this hard. I may have to face another procedure or two...whatever, BUT GOD can just speak it healed and if not, He won’t leave my side. Either way, I win! No victory is easy and no victory is sweeter than the hardest fought ones.💜 #crohnsdisease#crohnsawareness#jesus#godsgotthis#ostomydiaries#ostomy#nocolonstillrollin#crohnswarrior#god#prayer#victory
Part of a song I wrote today. I’m feeling raw, but having a hard time expressing my emotions. It seems like the only way I’m able to is through song. 🎤🎵✨This is my first time using iMovie and I don’t know how to get rid of the slideshow transition effect, so forgive the dorkiness on that. This is also a rough draft first recording. 🤷🏻♀️ #sing#singer#songwriter#music#musician#acapella
Beautiful sunrise this morning. Don’t forget to take a moment every now and then to enjoy the simple pleasures in life. So many of us have been given a new life when we got our stomas. Don’t waste it searching for the bad spend every minute of every day being thankful for the good. #stoma#ulcerativecolitis#stomalife#nocolonstillrollin#baglife
This is a public THANK YOU!! 🙏 I appreciate ALL of you! Yesterday was hard. It took EVERY ounce of me not to fall down the rabbit hole of pity. I was so humbled by all the messages I got from people thinking of me and cheering me on! I felt so grateful for the support I couldn’t feel sorry for myself so yes a huge thank you! ❤️ It’s not easy to share my journey. I do it because I know IBD is considered an invisible disease and I refuse to be invisible and hope to inspire people to talk about, to not be embarrassed and to believe anything is possible.
I’ve decided to take a more holistic approach to my situation. I’ve been reading about the benefits of acupuncture for the pelvic floor and I’m hoping that plus more pelvic floor therapy will help. No losing hope here! 🙌🏻 I let myself feel all the feels yesterday. I let out the tears, threw a dance party and kicked a workouts ass. When I went to bed I decided: wake up tomorrow and have a great day, don’t focus on what you don’t have, focus on all you do have!
Gratitude is how you life an abundant life, I’m so grateful today ❤️ I hope you are too!
I remember when I didn’t want anyone to know I had a bag. Do you remember that feeling, or did you ever feel that way? Was I embarrassed?
Not sure, maybe it was just my coping mechanism. I wasn’t ready to throw it all out in the open – I was still dealing with the changes to my body and didn’t want to get into the details with everyone else.
I reminded my boss that next week it will be 9 years since I had my surgery. He couldn’t believe it had been that long. He said that he remembered how I was before surgery.
He called me ‘fluctuating Frieda’ haha – my weight was up and down, my health was even more inconsistent and unpredictable, I was in and out of work.He asked me about my stoma and said that he couldn’t even tell that I had it. If he had said that to me 9 years ago I would have been stoked that no one could tell I had a stoma. That was the goal, keeping my stoma under wraps, I told people on a ‘need to know’ basis. Because of that I didn’t take any photos from that time. From the lead up, the day of surgery, the days after and the rest of my recovery. I now wish I had photos. Because now I’m ready to share what happened. All the good and bad from the days after surgery. I’m sad that all of the memories I have are the ones in my head. Or the ones that others can recall. My only regret from that time, which was a major turning point in my life, is that I have nothing to show for it. Nothing to show my kids. Sure I can explain it, but we live in a very visual world and photos would help a lot. Plus I’m not that great at drawing.Since then I’ve come a long way.
I’ve gone from avoiding photos to finding a whole heap of different angles, examples and scenarios of me living life as an ostomate to capture and share.
Quite often when my gut just needs a break, I eat very plain and simple meals. One of my go to meals, is Coconut Rice and Ground Turkey (with some sea salt for flavor). For the past year or so I’ve been weighing my good, especially protein, so as to ensure I’m not eating too much at once (thanks to a recommendation from my bro @smart4fitness ). This meal is 1 cup rice and 8 oz of ground turkey •
This way my GI tract can properly digest what I’m intaking, and I know and can track how much of a particular food group I am eating. Consistency is key with this, and there have been those days where I don’t do it, and 9/10 those days I pay for it in the aftermath 👎🏼 #food#diligence#balance#loveyourbody#treat#it#with#respect#you#only#get#one
Tis the season to rock out with your ostomy bag out! 🎄 Grab your festive holiday print ostomy cover today! •
Also available in packs of 3 for Ostomy Cover Bags and G-Tube/Cath Pads!
Leave a “❄️“ if you’re excited for winter!
💫ABILITEE AMBASSADOR 💫
Meet Charlotte! This beautiful ostomate is such an inspiration for IBD advocacy and self love. 💕Through her endless support for others and bubbly personality, not only does she brighten up our Ambassador program, but spreads happiness to an international audience. 🌎 •
[ABILITEE AMBASSADORS] is a social advocacy engagement program for influencers to make an impact in the medical community by spreading our missions, promoting cyber campaigns, being featured in our social media channels, and so much more! 💻💕 Apply today to take part in the modern revolutionary movement of fashionable inclusive adaptive clothing and medical accessories for all!
[Image Description: A young blonde haired women named Charlotte smiles beautifully into the camera. She is wearing a bright orange top, black pants, and a black cardigan with her ostomy bag exposed.]
Anyone who knows me, also knows I quietly manage to avoid being photographed 😂. I tend to be behind the camera instead. Here are some of my favorites from training Capoeira over the years. The first is me at one of my happiest moments at an event, sweaty and ready for more in the roda 😍❤️💪🏼🤸🏻♀️. For those who don’t know about Capoeira, it’s a Brazilian Martial Art with African roots. The roda, or wheel, is where we play. Capoeiristas gather in a circle, with the instruments at the top creating the rhythm and tempo of the game. Two people play in the circle at a time. The jogo or game is like a conversation. It’s a very expressive art. Contemporary Capoeira is often a friendly, but challenging game. While we may kick close to each other or take each other down, we have spent a lot of time developing these skills and don’t play to cause harm. But it is still a serious Martial Art and originally, the sport was used for self defense, to maintain culture and community, and to fight for freedom by slaves in Brazil. After slavery and before it became an official sport of Brazil, there was a period where it was outlawed, and Capoeiristas (some from gangs) continued to practice and fight in the streets and in secret. They rebelled and refused to give it up. Appelidos, or nicknames were given to Capoeiristas to disguise their identities. My appelido is Amazonas. #capoeira#martialarts#training#art#selfdefense#brazil#sports#athlete#motivation#memories#healthylifestyle#workout#ostomate#invisibleillness#ileostomy#nevergiveup#goals#dreams#freedom#warrior#nocolonstillrollin#diversity#mma
Got out of the house and ran errands for 5 hours today! Obviously including a trip to my lovely lash lady, because well, lashes are life💁♀️ Edward didn’t entirely approve of my priorities on day 9 post major abdominal surgery🙄 but he lovingly (sort of😂) chauffeured my purely aesthetic tush around town to do all the things😘😅 #nocolonstillrollin#nojpouch#lashesarelife#toleranthusband
Under this harness are many scars. Scars from 6 abdominal surgeries. Almost 2 years with an illeostomy. A wound that still hasn’t fully closed after almost 5 months. My days are still often spent in Dr’s offices and sometimes crying from pain or frustration. This isn’t dramatic, it’s just the facts. And it takes a lot to feel even remotely ok enough to make this happen. But we are strong and we are capable. Most people here don’t have any clue what’s under this harness and certainty no one in the audience does. Sometimes we show our scars and sometimes we hide them, either way they are always there. May they fuel us, may they open our hearts to the grace and beauty that is always around, may they join us. Together we handle it all. #chronicillnesswarrior#jpouchlife#ulcerativecolitis#nocolonstillrollin#girlswithguts
This cold weather has me thinking all about comfort. What brings you comfort? •
I believe that comfort is *huge* for those of us living with a chronic illness. Whether we find comfort in pajamas and rest, going for a walk, our family and friends, our babies (fur and not), talking with other patients, finding a hobby that we can do when we are not feeling well, or ALL of the above, it's important. I think if you asked ten patients what brings them comfort, you would get ten various answers, but the common thread would be "something that helps ease the mental and physical pain of illness". Ease and comfort. Mental and physical. If your mind and heart are at ease, then your body is able to find a little bit of comfort. True or false? I don't know that there is a right or wrong answer. I think it depends on the severity of your pain, the severity of your illness, how willing you are to be vulnerable and allow others to comfort you, your mental state, etc. Comfort means different things to different people and the only thing I know for a fact is that it is important. The other thing I know for a fact is that this baby hugging my neck in the photo brings me a ton of comfort...daily. ❤
#comfort#whatbagwednesday#wellnesswednesday#crohnsawareness#ibdawareness#shortbowelsyndromeawareness awareness #ostomyawareness#chronicillnessawareness#invisibleillnessawareness#fightlikeawarrior#withloveandgracie