About IBD (Amber): Writer, Advocate, Podcast Host

🎙️If you've never listened and are wondering about #AboutIBDPodcast -- here's the trailer! In the #podcast biz we call this Episode 0. 😉 This trailer has been available on my podcast feed for several years, but I've only now made a video for it. Much more about my show and all episodes are also on my web site: aboutibd.com/podcast/ It was fun to put this together from a bunch of archive footage. It's like a tour of my hair color over the last 5 years. 💅🏻

I started #AboutIBDPodcast with SoundCloud, my iPhone, and no long-term plan. Today I’m researching recording studios. Passion and consistency are the keys to success!

The records from around the time I was dx are not available anymore. There was a fire, a flood, or something, apparently. And then I had to get the files from around the time of my surgeries, and it is all really poor B&W photocopies. Although it was noted in those reports that my prostate was normal... (I have never had one of those! 😆)

@LoriPlung @aboutIBD @Youcantmakethi4 @MondayNightIBD @ownyourcrohns @nataliesparacio @GutlessGlamour @HolubarStefan All too vivid. Do you all read and have access to the reports of your surgeries? I wait until I've healed up to read them, but difficult as they are to take on board, they're useful documents for us, don't you think?

📣 People living with #IBD & caregivers, join the #PatientExperience convo led by @LoriPlung Whether you had IBD #surgery already or, you think that surgery might be needed at some point, What can help you in that journey? 🗳️👇🏽& share your thoughts 💬w us ! #StrongerTogether

I had dysplasia and a colon full of polyps, so surgery was a given. At least in my mind: I know there are people who refuse surgery at all. The choice was between 1 step and 2 step j-pouch surgery (2 different MD opinions) or permanent ileostomy. At 25, I didn't struggle to make the choices; to me, the path forward was fairly clear. But we had little information about long-term IPAA viability, so nothing was guaranteed, most of all my fertility. But I had to live in order to deal with the rest of it, so I booked my surgery and did everything my surgeon and ET nurse told me to do.

@MondayNightIBD Have you needed surgery? If so, what helped you make the decision, and why? @ownyourcrohns @aboutIBD @nataliesparacio

@Youcantmakethi4 @LoriPlung @MondayNightIBD @ownyourcrohns @nataliesparacio @GutlessGlamour @HolubarStefan We should make a list of the things our surgeons compared our colons to. Mine said raw hamburger meat! It's only funny in hindsight!

@LoriPlung @MondayNightIBD @ownyourcrohns @aboutIBD @nataliesparacio @GutlessGlamour @HolubarStefan That’s what my surgeon said about my colon he said it looked like chopped up dog food & was falling apart like a tissue. Probably the months of high dose prednisone had something to do with that 😩

Let's send more letters by the end of the day! Use the link below to support legislative issues important to people with immune-mediated conditions (IBD included). If you're in the US, plug in your mailing address and the tool does the rest! Super easy! Literally no excuses!

We're into the powders and the supplements, and I use them too, but remember that they're not FDA-regulated. At best: they might not contain what they say they do. At worst: they might contain harmful ingredients. verywellhealth.com/protein-shakes…

I'm a big fan of a morning walk! I mean, when there's ice and snow, and it's below freezing, it gets difficult, but it's not always a dealbreaker. A warm hat and gloves can help! verywellhealth.com/morning-walk-b…

One episode of my podcast, About IBD, takes more than 10 hours of my time to produce, soup to nuts. I welcome people to head to my website to apply to be a guest. The form I use is fairly short. I am a small business that pays for a subscription that offers forms with end-to-end encryption for everyone's security. So when I get an application asking for 10 hours of my time, which also complains about the low-effort application process, I'm sorry to say it bums me out. A lot. It demonstrates a disrespect for my time, my professionalism, and the company I've built, which offers high-quality educational content in written, audio, and video formats for anyone to access. At no cost. I'm sorry to say that, regretfully, an application for 10 hours of my time, which also complains about my secure process, goes right into the deleted folder.

Did you know you're not supposed to "push" when you pee? How many of us have been peeing wrong our whole lives? verywellhealth.com/things-to-avoi…

It can be difficult to get enough #iron and #calcium with #IBD, but taking a supplement can also cause symptoms. 🙃 verywellhealth.com/supplements-th…

My favorite thing about this photo is the hand sanitizer. 😆 my second favorite thing is the pop filters! 💜 IYKYK

The featured ostomy inspired 8min short film, STUCK, has completed its successful film festival run. From Hollywood to NYC, the film is now available for all to see! Please like, comment, and share on YouTube and help spread awareness. youtu.be/2VMtPAKmXs8?si…

It's not uncommon to have a low libido with #IBD, which could be for a number of reasons. It's important to know that it can be a medical problem, and help is available. verywellmind.com/help-for-women…

Do you really need to drink a bunch of electrolyte replacements? Here's what it would look like if you really do have low electrolytes. verywellhealth.com/what-happens-w…

I don’t think we talk enough about this. Antibiotic stewardship is still so so poor.

@Youcantmakethi4 Right. Some are fine but then others really set me off. So sometimes I’ll have a benign looking sparkling water and then have the worst time after!

@aboutIBD I know my belly has a terrible reaction to artificial sweeteners and food stabilizers as well….

Animal studies are not human studies, but what is concerning here to me is that artificial sweeteners can disrupt the gut microbiome, which is not something we need when living with an #IBD. verywellhealth.com/sorbitol-and-l…

Here are the positions you should sleep in to relieve certain conditions. verywellmind.com/sleep-position…

😒 Have you heard that artificial intelligence (AI) "hallucinates"? It might tell you what you want to hear, so we need a double-check. ✅ Learn more about AI and its use for IBD patients on #AboutIBDPodcast 196. In your podcast app, on YouTube, or at bit.ly/AIBD196

Well, what do you know. People like having insurance so they can get healthcare? Who knew?!? </sarcasm>