I thought it might be helpful to explain how to check your filtered messages. For fistula patients interested in joining our support group on Facebook (Fistula Support Group!), you will need to check your filtered messages for our screening message. Once you have found the message, just reply to confirm that you have a fistula/colorectal issue. This is a simple, and fairly effective way of keeping the group as safe as possible, so without a reply we can’t add you!
In case you’re wondering why you haven’t been accepted, check your filtered messages! Here’s how:
1. Go into your Messenger app. Look at the bottom of the screen, and tap “People.”
2. On this next screen, tap “Message Requests”
3. If you don’t see our message right away, tap “Show More.”
If the message is more than a month old, you may have to send another request, but once we’ve heard back from you we’ll make sure you get into the group!
Many of us don’t get proper aftercare instructions after fistula surgery. A friend in my support group shared photos of her aftercare instructions, and they were so good that I had to type them up to share with all of you. I turned them into images so that they can be easily saved and shared from most platforms. Please feel free to save and share them!
(All of this information comes from a handout by Alberta Health Services)
I have not been very active on here lately as I am going through a new health ordeal (adenomyosis and endometriosis! ugh!), and am navigating my way through all of that. I hope to soon be putting up some new stuff here, and have lots of ideas, so please stay with me!
I am excited to be able to share a new fistula project with you. Fellow fistula warrior Jen and I have been working on a project called Finally Fistula Free. Our goal is to provide a space where people going through the fistula nightmare can come to find success stories. We are currently collecting stories from people who have healed from their fistula, and want to share their journey with others. If you (or someone you know) has healed from a fistula and would like to share your story, please send us your success story at firstname.lastname@example.org, we would love to hear from you and share your experience.
Part of breaking through the stigma of this health problem is being able to talk out loud about it. Speaking from my own experience, writing about my journey in detail has been empowering, and has enabled me to help others. I encourage you to step outside of your comfort zone, even if that means just reaching out and joining a support group (I run a great one on Facebook: Fistula Support Group, and Jen runs a wonderful group for women: Abscess/Fistula Support for Women), or openly speak about what you’re going through with family or a close friend.
You can check out my full success story on our new blog here: Through the Tunnel of Doom and Back Again, and on the home page you will find Jen’s amazing journey, as well as our first contributor, Mary’s story. We hope you enjoy it, and that it brings some hope!
You know, sometimes the universe has your back. I’ve been wanting to write about Crohn’s disease and ostomy tips for quite some time, but it’s hard to write authentically about what you don’t know. I could easily gather a lot of info, and provide you with an article you could’ve written yourself with enough Google searching, but that’s not really what this blog is about. It’s about helping you through this with some guidance from someone who’s been there.
That’s why I’m so excited that Jen connected with me recently. She writes a really wonderful blog on Tumblr that covers a lot of ground, and has especially great info Crohn’s and ostomy tips. I particularly love her attitude about it all, and I think you’ll find it refreshing.
I would really love to give extra voice to these topics (Crohn’s, ostomy, IBD), and I think a great way to do that is to interview several people in the community and share their stories. If you are interested in participating in this (and you may do so anonymously if preferred) please contact me directly at email@example.com
This disease can be so isolating, can feel so hopeless, and can be extremely hard to talk about. We have been building and growing a great online support group on Facebook over the past few years. Thanks to some really open and lovely people, it has become a really wonderful space to find support, advice, solidarity, and understanding.
If you think that could be helpful to you, please check it out!
When you go through any sort of long-term illness, disease, or trauma, you will never cease to be amazed by the stupid things that come out of well-intentioned mouths. One of the most common cliches I heard was, “what does not kill you makes you stronger.” I’m not saying I don’t think there are situations where that might be true. But don’t say it to someone who’s had 8 surgeries on their rectum. Ever. Here’s a great blog from the Mighty on this topic: