After church yesterday, this thing in the picture with me attacked me in a Barnes & Noble bathroom. Be on the lookout for this bizarre creature. I hear it’s a dangerous parasite that will bore you to death by talking about Fortnite nonstop. You’ve been warned. #vaccinate
There is a massive stigma in the UK around disabled access toilets.
Living with inflammatory bowel disease is difficult and daily living becomes stressful when out and about when it comes to public bathrooms.
Being a 25 year old girl that looks externally healthy and well, using disabled toilets gets me negative stares, comments and tuts!
For me, they’re easier to use. They’re larger so there’s more room for me to get myself sorted and best of all they’re private!
It’s funny because before my operation in February, when my colitis was at its absolute worst, public bathrooms were my life - I used to plan my life around using them.
Now, I can spend my days enjoying my life not having the worry of where is the nearest toilet. Plus, the radar key given to me after surgery helps! It was like a little extra medal 🥇🚻🚽🔑💜
Not exactly what it looks like😊. Each morning, I mix one packet of VSL3 probiotics into a drink, which I have on an empty stomach. I use mostly filtered water, with a little almond milk, and it tastes like...almond milk👏. That’s what you see here📸. I’m not 100% sure if VSL is hugely helping at the moment (regular strength - my GI Dr prescribed it), but it doesn’t give me any issues. I’ve been using it for around 6 weeks. I’ve also been taking probiotics for over 2 years, and I do feel they help me.
I’m going to learn more about this company, but @malkorganics, thank you🙌. The products are delicious, and more importantly, they don’t bother with unnecessary ingredients like gums. For me personally, buying can be better than making my own - in terms of having limited time available. Just thank you repeatedly to Malk Organics and other brands who are now leading the way to better food💜..trying to be hopeful!
I’ve been really struggling with the digestion system from hell and side effect of the horrible tablets. My bulging right side is hurting more and more. And around my stoma site feels like waves of stabbing twisting pain.
Then one of my lymph glands in my groin is big and painful, that pain shoots down my left leg.
Getting even more trapped gas which doesn’t like to my ileostomy, so the fullness pressure of my insides are keeping me awake and getting about 3 hours sleep a night if I’m lucky.
My back feels like it’s been hit by a baseball bat.
I’m getting random bruises especially on my arms.
I feel like I’ve got flu daily.
But I carry on because it’s not as bad than 2016. I am healthier and stronger but I still struggle daily.
I’m the person who will keep quiet till I flop.
I just need my busy September out of the way, then I can cry.
Yes I’m looking forward to this scan next wk to see what’s going on inside.
I hate moaning but I need to tonight. And I’m living in #hm vintage high waisted jeans to hold my ostomy bag in.
#NoFilter because real life has no filter. ✨ 5 week recovery and my favorite 👨🏻⚕️ is back 2 work! It has been the most challenging & hardest month ever... but everyday is another chance to get stronger & be healthier!!!! Proud of @sxpach1 for not giving up 💪🏽💛🤓 #whatdoesntkillyoumakesyoustronger#nocolonstillrollin also big shout out to @melisha_simran for being my rock and keeping me sane 😂
I AM SO EXCITED to be a finalist for #WEGOHEALTHAWARDS Best Kept Secret 2018 for This is such an incredible honor, and I am so grateful for all the support and love I’ve received! 💜💚
I am pumped for the future of Ostomy Diaries. Thank you @wegohealth for supporting advocates, and making the lives of patients living with chronic illnesses a little bit better! 😊
Super bitter sweet week!!! I'm extremely excited to be in the final week of my workout program. I'm feeling the major gains in my muscle definition. Although still small looking in a picture, I can't help flexing and feeling how much my biceps have grown. It feels so.... weird but cool!!💪
I even have the V shape in my triceps... I mean, how hot 🔥 is that???
I am super proud of myself for having given my all to this program. It will make things easier for me in the long run I'm sure!!
I'm sad that I can't continue on to round 2 with my husband and most people in my accountability group. I will be cheering all of them on from my couch. I have surgery next week and will be out of commission for a few weeks. Walking will be my friend for at least 8 weeks following my gut job. 😎
But with the support of my tribe cheering me on, with the workouts I am finishing and my husband by my side, I have no doubt this is a recipe for success!!!👌👌
3 workouts to go!
Full Body HITT
So cheer me along, the more to the tribe the more power of accountability is strong!💥
#Repost @rlblife: When a picture is worth 1,000+ words. Despite my own medical scare today and constant #secondaryadrenalinsufficiency /#jpouchlife battles, I was able to visit my fellow #ibdwarrior @smithreynolds who has just completed his final #jpouch#designercolon surgery in his own #nocolonstillrollin journey. This picture broke my heart wide open and despite its rawness I felt compelled to share it because it is #ibd personified, it is as beautiful as it is heartbreaking.
When you live your life with a silent #chronicillness it is just different: you look okay on the outside but in reality you can barely get out of bed (or off the toilet) or out of the house, but you do, and you put on your "face" and soldier on... not for a day, a week, a month, but for years (or decades) and it gets to you. It hardens you, and it softens you. Like so many silent diseases, #ibd can be debilitatingly lonely and painful and shameful and terribly isolating. Who wants to talk about poop? And even less people want to hear about it.... So, to build a fellowship within this small group of silent warriors and to be able to share with someone else who truly knows your struggles and your fears and your shame is beautiful and powerful beyond words.
But it is also deeply sad that we have to live like this and support one another though physical and emotional pain most will never comprehend when a cure is just an arms length away. That breaks my heart.
Click the link in our bio for more on Rebecca's story.
Sometimes, my chronic illness looks like the right photo. Other times, it looks like the left. Both are my reality, however, because my illness is somewhat invisible (minus my stoma), I have to look like the photo on the left in order for people to remember how much my illness truly effects me. Sharing my journey with my illness has always been about raising awareness, and helping people who are just like me. Every time I get a message saying I’ve helped someone about to get surgery; my heart literally swells and I want to cry with happiness. I’ve only had my stoma for 7 months but I’ve had so many messages telling me I’ve made them feel better about their stomas!✊🏼thank you to everyone who helped me through it, and here’s to hoping I can continue to help others! Don’t always assume people who look healthy, are!
This is how I shower most of the time. I try not to take long showers because even a short shower takes alot out of me. I have severe fibromyalgia and take 60mg of morphine twice a day and 30mg of Oxycodone 3 times a day to control the pain. It doesn't work all the time but it's better than nothing.
So as many of you know I ride this weekend in a bike tour. I am trying to raise money for children/youth in foster care. Please go to my bio and go to the gofundme page and donate if you can. If you want to donate per mile that I rode just a reminder I rode 121.09 miles. Thank you and 100 percent of the donations will go to the Adams County Foster Care program. #gofundme#donations#fostercare#nocolonstillrollin
Terapi for kroppen🐎for 9 år siden på mitt sykeste . Der store smerter og fosterstilling på varmekablene på bade var hverdagen. Da kjøpte jeg hest.svigermor trodde jeg hadde klikket -godt forståelig. Men ser i dag hva denne skapningen har hjelpt meg igjennom .Fantastisk hva dyr gjør me oss mennesker 🐎🌸å flax det er samboeren som har heste allergi og ikke jeg 😆#terapiforsjela#araber#hesterbest #
Pre-op with my stoma nurses didn’t go well. They thought I wasn’t mentally ready for a stoma.
I didn’t really want a stoma I’m sure most people would agree with me there. I don’t think i would have ever been ready.
But I had to look at the positive outcome for it. No more running to the toilet, worried about going out for meals, worried about what I was eating , sleeping all the time with no energy.
If we believe we can cope and adjust to it we will 💪🏼 my life has changed for the better 100%.
My favourite yoga positions to help with lower back pain and pelvic pain.I try do these as much as i can even at work when no one is around. Ps- im only a beginner so if my technique is wrong dont copy 😂
5.4 miles on this #sundayrunday ! I was planning on running outside since it was nice and sunny out, but waited way too long. I scrubbed out the inside of my washing machine and needed to rest my back for a bit. By the time I started it was noon? Just after noon? I had read some posts on here from local people going on and on about how hot and humid it was out there, so treadmill it was! And I’m glad I did that, because I kept feeling my sweaty drippy shirt hitting my sweaty drippy back, yuck. I added some strides in throughout the last two miles, so I’m pleased with this run! No fancy paces or worrying about times....just a strong, happy run! 😎 Then I spent a couple hours with my BFF biffy, working on her baby registries. I just love her and her tiny baby! Watching football the rest of the night! Big day tomorrow with doctor appointments and errands! Definitely going to try to get a weight workout in sometime! 🤞🏼Have a lovely evening, peeps! 💜🏃🏼♀️
You never know how much you have to say...until somebody asks you a question, or two or three....
We thought we were going to tape a one hour podcast, but noooo....two hours later...
So we've created a 5-Part Video Series of "Pain 2 Power" Podcast that gives a detailed account of Robert's journey of beating and surviving cancer...available here and on Youtube.
Thank you Rich @mindful.accord for the interview.
👆🏼Full video in bio👆🏼Please watch, listen and share with anyone you feel needs to hear this.💙
So many of us have lost complete sight of what feeling well means. Chronic illness keeps pushing the bar of tolerance higher and higher. We have been doing this/feeling like this for so long that we learn to adjust, overcompensate, and self medicate. The notion of “being well” becomes more and more distorted. It’s ok to be honest with ourselves and our doctors about how we really feel. You don’t need to downplay your symptoms or fall into the habit of “oh well this is my life and it is what it is”. If you’re in the bathroom 10 times a day. Waking up in the middle of the night to use the bathroom, walking around with joint pain, low grade fevers, cancelling social plans, falling into bed as soon as you walk through the door from work or school etc, your quality of life is not generally well. Keep searching for ways to feel better. There may not be cures for some of the things we suffer from but there are ways to alleviate some of the more acute symptoms. Keep fighting, stay strong but examine what you tolerate and put up with daily. 💜#chronicillness#autoimmunedisease#ibd#ibdsucks#ibdwarrior#ibdfighter#invisibleillness#uc#crohns#jpouch#nocolonstillrollin#ccfa#findacure
i took this picture the day i got home from my surgery around 2 months ago. bandages still on, stoma still painful, body so weak i could barely use the washroom on my own. it feels insane that it’s only been two months since i got my ostomy back and my whole world did a 180 (once again lol). so i thought i’d do an update on how i’ve been since then.
my internal abscess has not healed yet, it drains constantly, it causes me so much pain when i sit down, and i believe it’s causing UC to be active in my rectum. i have starting bleeding from my bottom once again, and a months dose of antibiotics did nothing. so tuesday i see my surgeon and beg for a next step that won’t involve more surgery, because i don’t think my body can take it right now.
aside from the abscess and suspected inflammation, my life is 100x better with my ostomy. i have been going out, spending weekends away, finally starting school, and embracing my colon-less life with open arms🤗 i’ve started to realize that this ostomy is one of the best things that has ever happened to me, because without it, i wouldn’t be here talking to you guys, studying the subject i love, and eating the cheesiest grilled cheese i could make🧀 (why is there no grilled cheese emoji??) anyway i hope you guys are all having a great sunday, and remember if you aren’t my dms are always open!💜😊 .
PS. I wrote an article about my story, the link is in my bio and i would be sooo happy if you could read it!!💕💕
Enjoying the last bits of summer with this mush ☀️💛
I realize I’m constantly apologizing for being MIA but the reality is I’m just terrible at documenting every day life 🤷🏼♀️ I get very consumed in my normal routine and also do a good amount of unintentional digital detoxing which is basically the recipe for a not so great instagrammer .. hang with me guys, I promise to do better (also will take any tips for finding time to stay engaged) ☝🏻
Health update:: I have had a handful of things happen over the past week in regards to my recent weird symptoms .. including an updated scope in Cleveland! Good news :: inflammation looks MUCH better than back in January. There are still a couple spots here and there but definitely not the degree that it was before 🙌🏻
My brain fog, fatigue, skin outbreaks, etc have all seemed to improve. They will come and go now but are no longer constant - which I’ll take ...
I am on a low dose of flagyll (125 mg a day) and that seems to keep everything settled from a pouch perspective. My surgeon actually presented my case to a Cleveland city wide board and everyone there also thought my post op incident was extremely weird. The final recommendation was that I see an infectious disease doctor in case I have some strange bacteria that hasn’t been identified or is not on the normal list of things to test for 💉
We decided it would probably be a good thing to look into especially now knowing I’ve been exposed to a tick borne illness as well. Who knows, maybe they will have some new insight into why I can’t quite kick the antibiotics. Doesn’t hurt to get additional options ☑️
Until then, I’ll continue with what has me feeling well ✌🏻
She didn't know I had an ostomy, even though we'd spent at least a few months exercising together and hanging out... until she saw a post I made directly about having an ostomy.
Just a little reminder that your ostomy is not as obvious as you might think!
Everyone’s fighting their own battle. Sometimes we can see it and many times we can’t. I knew this to be true when I “just” had RA. It became much more apparent to me after I was diagnosed with cancer. The first 6 months of treatment, I didn’t lose my hair. Some of that treatment (brachytherapy) was horrific, but you could never tell just by looking at me that I was sick. It’s a blessing and a curse! I’m grateful to be looking and feeling healthier as I begin to get back to some normalcy in my life. Yesterday was 6 weeks since my surgery. Although I know I’ve made so much progress, it doesn’t always feel that way. I got all glammed up for a fashion show for charity on Thursday and did a side by side of my first walk in the hospital after surgery...I can really see it there. If I could only get this ostomy business figured out. I’m tired of hurting and being afraid to go anywhere. Im up to walking about .5 mile on the road and I’m looking forward to going back to work part time this week. Another big step in the right direction. 💙
2 weeks post-surgery. Finally up to throwing some makeup on and #selfie . Still getting used to life as part of the #ostomate club again. Legit badass club (no pun intended lol). Takes some major strength to be a member! 💪🏻
Okay here is day two update. Made it 48.11 miles. Started off great but man there were some big hills. Also take those hills and combine it with 95 degree temperatures and 20 mph winds and my body was exhausted. It was great I’m proud of myself for completing that many miles, wish I could have gone further but this makes 80.7 miles over two days. Not too bad I’m impressed with myself thank you again for all of your support. #pedaltheplains#limoncolorado#colorado#bike#bikeride#nocolonstillrollin#ibdwarrior#ileostomy