SToPPS
@SToPPS_study
BDRF and IA funded study to explore communication practices surrounding stoma formation.
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"There’s definitely a stigma around stomas. People think, 'I don’t want to have a stoma, I’d rather die'. But actually, it’s a different quality of life, but it’s still a quality of life." Watch Susan's story for our #auguts campaign. bowelresearchuk.org/auguts-stories… #HaveYouGotTheGuts
I’d love to see a time when poo is not a taboo & stomas are widely known about. They can save lives & improve QoL. I can’t say I love mine but it is what it is & I’m damned if it will rule my life. Life is good! #AnytimeAnywhere #StomaAware #MakingLifeEasier #WorldOstomyDay
Big shout out to all ostomates around the world on #WorldOstomyDay2021 👏🏻 Bottom left I’m smiling & inside the excitement is rising as we are just about to enter the building for search and rescue training 👨🚒😁 #worldostomyday #AnytimeAnywhere #stomaaware #staystrong
#StomaAwareDay #StomaAware I’ve had so many HCP that have said they would sooner die than be like me to my face comments behind my back they forget I can’t hear them I can challenge this but imagine a new scared stoma patient hearing this
Taken at work 5 minutes ago in the disabled toilet.. Whilst somebody was hammering on the door telling me to "hurry up" I've also been swore at before because "it's for disabled people only" #StomaAware #StomaAwareDay
Let's breakdown the stoma stigma , jessica is loud and proud about her stoma and she has been a advocate for so many other people living or needing a stoma 🍎💗 #WorldOstomyDay #kidswithstomas #viral #stomaawareness
Are you a patient with a non-Crohn’s anal fistula? We are developing a tool to measure quality of life and need your input 👇🏼
Once again, thank you to all who responded to our questionnaire. You have given us a lot to think about. We have almost finished going through your responses. Keep your eyes peeled, more information on the study to follow. @littlemissileo @SarahSquire73 @VBlush @dalevim
Thank you to everyone around the globe who took part in our online patient and public questionnaire. We had a fantastic response!! We will get analysing!! Focus groups to follow. Thank you!
SToPPS questionnaire closing Sunday 28th February. If you: ✅Have a stoma; ✅Have previously had a stoma; ✅Live with or care for someone that has/had a stoma; ✅Have recently been told of the need for a stoma; Last chance to share experiences. Link: forms.gle/iYbWDqvhCVhrPA…
We're thrilled to invite you to join the @NWRCsurgery New Projects Webinar: Thurs 25th Feb 7pm. Hoping to soon hear a timeline to the end of lockdown, leading to an easier research climate... looking forward to hearing about new projects. Webinar link: zoom.us/j/91405214565
Previously had a stoma but had a reversal... we still need to hear from you! Help us shape research into communication practices around stoma formation. Stopps study patient and public involvement questionaire still accepting responses: forms.gle/AE8f2sDu1A5t6N…
Thank you, we've had a fantastic response to our questionnaire so far...! If you: ✅Have previously had a stoma (reversed); ✅Live with someone that has/had a stoma; or ✅Care for someone that has/had a stoma. We want to hear from you too. Link:forms.gle/HbziVR4H89HFEH…
Also if you have previously had a stoma!!!
If you: ✅Have a stoma; ✅Need a stoma; or ✅Live with/care for someone with a stoma; We need you!! Share your experiences with us and help shape research into communication practices around stoma formation. Link to questionnaire: forms.gle/1iAvJP5RGJGX31…
If you: ✅Have a stoma; ✅Need a stoma; or ✅Live with/care for someone with a stoma; We need you!! Share your experiences with us and help shape research into communication practices around stoma formation. Link to questionnaire: forms.gle/1iAvJP5RGJGX31…
✨STORY TIME ✨ Let me take you back to being three months post panprotectomy surgery. It’s mid August and I’m called in to see my surgeon after a pelvic MRI scan not three days prior. My wound had an second infection 🤢… 📸 instagram.com/p/CK59H_YgLtf/ via tweet.photo
I often talk about the positives of living with a #stoma, BUT, life is not all sunshine☀️ & rainbows🌈 & I think that needs to be talked about too🗣️ In this video, I share my recent experience of an intestinal blockage, and how NOT to manage it! youtu.be/520udU8QDac
youtube.com
YouTube
My recent intestinal blockage
This is a great opportunity for anyone with a #Stoma or who cares for someone with a stoma. @JourneyStoma could you share it and complete it?
STOma formation - the Perceptions of Patients and Surgeons on communication - Patient and public questionnaire now live! Please share your experience with us and help shape research. docs.google.com/forms/d/e/1FAI…
I've filled mine in... Have you done it yet? Really good open questions, allowing honest answers... Please RT.
If you have, or had a stoma, been told you may need one, or care for someone with one please take a few minutes to complete this survey. Your views matter! Please RT
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