#crohns — Public Fediverse posts

I've just had to disappoint my doctor's research coordinator by declining to participate in a clinical trial for a new #crohns medication under study.

I'd be willing to participate generally, but the time commitment is just too much. Numerous pre-launch visits, two endoscopies (colonoscopies) and then monthly follow ups for the first three months alone.

Not with a new job, unfortunately.
She was so disappointed when I wound up declining. I'm sure it's hard to find willing and able participants in central PA, though. So I get it.

But it's still a no for me.

I guess since I'm sharing random music today....here's my personal Crohns disease theme song. youtu.be/xDiuSwrRQ4M?... #music #crohns #bobsburgers

"Bad Stuff Happens in the Bath...

Winding up missing an important #crohns tele appointment I was literally sitting waiting at my device to attend (for an hour!) because of stupid things really has me very, very annoyed this evening.

#ibd #crohnsDisease

Oooh! I remembered to give myself my dose of #skyrizi today.

Go me!

And that's with post-general-anesthesia brain!

#crohns #CrohnsDisease #IBD

I just want to be done with the thing already.

But a few wins:
- Pharmacy had the prep they want me to use, and it wasn't GoLytely
- New healthcare got me my ID card with all the necessary numbers before I headed to the pharmacy to pick up the prep
- I got a morning procedure time slot instead of an afternoon one

#crohns #crohnsDisease #IBD

If you are an #IBD or #IBS sufferer, download my aoo now! It's free for 2 weeks, so you have nothing to lose. I'm an independent developer so every download / sale helps me so please support a fledgling developer.

https://blackmercury.co.uk/ibddiary/

#IBDDiary #Crohns #Colitis #CrohnsAndColitis

If you are an #IBD or #IBS sufferer, download my aoo now! It's free for 2 weeks, so you have nothing to lose. I'm an independent developer so every download / sale helps me so please support a fledgling developer.

https://blackmercury.co.uk/ibddiary/

#IBDDiary #Crohns #Colitis #CrohnsAndColitis

If you are an #IBD or #IBS sufferer, download my aoo now! It's free for 2 weeks, so you have nothing to lose. I'm an independent developer so every download / sale helps me so please support a fledgling developer.

https://blackmercury.co.uk/ibddiary/

#IBDDiary #Crohns #Colitis #CrohnsAndColitis

If you've downloaded my #IBD app since it launched, thank you. If you're enjoying using it and are finding it useful, please do take a couple of minutes to leave a positive review.

#crohns #colitis #crohnsandcolitis #IBS #IBDDIary #AppStore #SwiftUI #Development

If you've downloaded my #IBD app since it launched, thank you. If you're enjoying using it and are finding it useful, please do take a couple of minutes to leave a positive review.

#crohns #colitis #crohnsandcolitis #IBS #IBDDIary #AppStore #SwiftUI #Development

If you've downloaded my #IBD app since it launched, thank you. If you're enjoying using it and are finding it useful, please do take a couple of minutes to leave a positive review.

#crohns #colitis #crohnsandcolitis #IBS #IBDDIary #AppStore #SwiftUI #Development

It's great to see people have downloaded my #IBDDiary app. Small numbers but if it helps #IBD sufferers monitor their symptoms then that's a win in my book. #crohns #colitis

It's great to see people have downloaded my #IBDDiary app. Small numbers but if it helps #IBD sufferers monitor their symptoms then that's a win in my book. #crohns #colitis

It's great to see people have downloaded my #IBDDiary app. Small numbers but if it helps #IBD sufferers monitor their symptoms then that's a win in my book. #crohns #colitis

If you suffer from #IBD you can download my new app to log your symptoms. With a totally 𝗙𝗥𝗘𝗘 14 day trial you can try before you buy, with the full version costing just £1.99 / $1.99. Get it on the iOS App Store: https://apps.apple.com/us/app/ibd-diary/id6450651488

#crohns #colitis

If you suffer from #IBD you can download my new app to log your symptoms. With a totally 𝗙𝗥𝗘𝗘 14 day trial you can try before you buy, with the full version costing just £1.99 / $1.99. Get it on the iOS App Store: https://apps.apple.com/us/app/ibd-diary/id6450651488

#crohns #colitis

If you suffer from #IBD you can download my new app to log your symptoms. With a totally 𝗙𝗥𝗘𝗘 14 day trial you can try before you buy, with the full version costing just £1.99 / $1.99. Get it on the iOS App Store: https://apps.apple.com/us/app/ibd-diary/id6450651488

#crohns #colitis

Today I'm thankful for modern medicine that can help my body realize my intestinal tract is actually still important and useful and not and enemy that needs to be constantly attacked.

There a lot wrong with American healthcare, but for this part of if (and that I can actually access it), I'm grateful.

#Skyrizi #Crohns #IBD #CrohnsDisease

@ScienceScholar
Docs have lots of problems diagnosing #crohns even after symptoms have appeared. Maybe this will help them, too.

I give myself a shot thing for #crohns about every eight weeks. It's not a big deal, really. And the meds work.

So I use a sharps container. Fine, pharmacy (or someone in the great cacophany of folks involved) provided me one. Today's dose filled it up.

The container had a number to call about getting a box to recycle them. I called it. It was the manufacturer's assistance program. Fine.

Spent 10 minutes updating all of my information with them. Then the agent says, "Oh, we don't take those in any more."

🙄

You could have saved me ten minutes when the first words I said were "sharps container".

For my soon-ish birthday, my specialty pharmacy gave me a nearly $7,000 bill for the latest shipment of the single dose of medicine I take every eight weeks.

Never mind that when I changed to this group of providers with my insurance change back in June I gave out information numerous times to multiple parties that should make my co-pay $0. Including to one company in the chain whose sole purpose is making sure I have a $0 co-pay.

Ah, #americanhealthcare !

#chronicIllness #crohns #ibd #skyrizi

Running on a belly full of quesadilla and yogurt wasn't my best idea but some more miles down.

Donate: https://socialsync.app/fundraiser/cr-xjvkp0yr04w60?currentTab=donations

Goal: 32.93/60

#Running #RunningCommunity #RunningPunk #HardcoreRunning #CharityRun #Crohns #Colitis

Running on a belly full of quesadilla and yogurt wasn't my best idea but some more miles down.

Donate: https://socialsync.app/fundraiser/cr-xjvkp0yr04w60?currentTab=donations

Goal: 32.93/60

#Running #RunningCommunity #RunningPunk #HardcoreRunning #CharityRun #Crohns #Colitis

@courtcan
Years ago when I started my web page for #crohns & #Ulcerativecolitis, back in the Stone Age when you had to write your own html, I’d get 2-3 emails a day touting cures, often offering me a ground floor marketing opportunity. The most entertaining was a home kit for a blood filtering process similar to hemodialysis from some Russian guy. Drinking aloe vera was another popular one.

Another 3.5 miles done.

Donate: https://socialsync.app/fundraiser/cr-xjvkp0yr04w60?currentTab=donations

Goal: 22.1/60

#Running #RunningCommunity #RunningPunk #HardcoreRunning #CharityRun #Crohns #Colitis

Another 6.6 miles (and an additional 0.6 because I got lost) for Crohn's and Colitis UK #Run60 putting me over my 2 miles a day target.

Donate: https://socialsync.app/fundraiser/cr-xjvkp0yr04w60?currentTab=donations

Goal: 18.6/60

#Running #RunningCommunity #RunningPunk #HardcoreRunning #CharityRun #Crohns #Colitis

Slower one today but I had a guest with me.

Donate: https://socialsync.app/fundraiser/cr-xjvkp0yr04w60?currentTab=donations

Goal: 11.6/60

#Running #RunningCommunity #RunningPunk #HardcoreRunning #CharityRun #Crohns #Colitis

Slower one today but I had a guest with me.

Donate: https://socialsync.app/fundraiser/cr-xjvkp0yr04w60?currentTab=donations

Goal: 11.6/60

#Running #RunningCommunity #RunningPunk #HardcoreRunning #CharityRun #Crohns #Colitis

After years of IV infusions and hours traveling to and from IV centers, self-medicating at home in five minutes while also continuing to work is still amazing.

#crohns #crohnsDisease #ibd #skyrizi

My #CrohnsDisease has been well controlled since 2020 (thanks to awesome, yet horribly expensive medications). But every now and then I have a day that reminds me what uncontrolled #Crohns is like.

Today is one of those days.

@ScienceScholar
If someone could post a non-protected version of this that would be appreciated. #crohns

I have reached the stage of my current dose of #Crohns meds where my body is letting me know the med is low and starting to rumble.

I'm due tomorrow.
Thank the stars.

#ibd #crohnsDisease #skyrizi

I normally don't feed the trolls, but this one was too good to pass up #ostomy #crohns

This brought to you by learning today that I'll have four weeks to potentially find and see a new care team, get them to issue a new script to a new pharmacy benefit provider, get pre-approval for Skyrizi from said pharmacy provider, and get the med delivered by a new specialty pharmacy.

But I can't even find out yet if my doctors are in network with the new plan or if the benefits will even consider covering Skyrizi. So that's exciting.

#crohns #crohnsDisease #healthCare

Salt pills > electrolyte drinks

No I will not debate. 😂

#pots #crohns #ibd

It's #skyrizi injection day.
I missed the morning appointment on my calendar and just happened to have a mental spark of "isn't that supposed to happen today?"

So I clearly need to do something better with my reminders/appointments/thingamajigs.

Anyway, it's out and coming to room temperature.

Still better than having to drive 2 hours for a 3 hour IV infusion, then 2 hours back (and after Benadryl!) like I was doing for Inflectra.

Aren't bodies fun?

#ibd #CrohnsDisease #Spoonie #crohns

Scientists at our university and LMU University Hospital Munich combine dietary therapy with fecal microbiome transfer to improve long-term treatment for #Crohns disease. By reshaping the #gutmicrobiome, they aim to sustain remission and reduce #inflammation: http://go.tum.de/395259

📷 A.Eckert

Wow!
Linking a particular bacteria of the gut microbiome in a chain that could potentially be a source of major depression. Follow up research could also show how environmental contaminants combined with the metabolism of the gut microbiome could be linked to autoimmune and other conditions.

Science is amazing!
Can't wait to see where this drives other future research and, eventually, treatments.

https://hms.harvard.edu/news/drawing-line-gut-microbiome-inflammation-depression

#crohns #crohnsDisease #IBD #autoimmune #research

Skyrizi injection done.
A five minute process is so much easier than a three hour infusion. Or the one hour infusion at a facility two hours away that the initial Skyrizi startup process involved.

#Skyrizi #Crohns #CrohnsDisease #IBD

"The big hope is to find active ingredients that would restore the functionality of disrupted mitochondria, in other words, to repair them in a sense. This would limit intestinal damage as a trigger for chronic inflammation processes," said Dr Dirk Haller.

#health #medicine #IBS #IBD #Crohns #gut #microbiome #research #science

https://www.labroots.com/trending/cell-and-molecular-biology/27926/mitochondrial-dysfunction-disrupt-microbiome-cause-crohn-s

I found the 🦭 on my run this morning #IBDAthlete #Crohns #runnersofmastodon #running

https://strava.app.link/QwomxPzFDNb

Prep mostly done. So it's stage 1 of checking out how to deal with ongoing (37 years) Crohn's and diverticulitis disease tomorrow. First up is a colonoscopy, which always fascinates the scientist in me if nothing else. #Crohns #Colitis #medicine

Crohn’s disease breakthrough could cut need for surgery and further treatment

Giving Inflixmab soon after diagnosis could prevent the majority of adverse outcomes
https://www.msn.com/en-gb/health/other/crohn-s-disease-breakthrough-could-cut-need-for-surgery-and-further-treatment/ar-BB1iHB8l?cvid=91639d7ce5ec4ee7ae805bc2c029d8ea&ocid=winp2fptaskbarhover&ei=15

#Crohns
#Inflixmab
#TreatSooner
#CambridgeUni

Did my first #Skyrizi OBI home injection earlier and it went rather smoothly! Small issue of the door not closing flush, but that was an easy fix. The little device was louder than I expected, but 3-5 minutes later and it was over before I knew it. Taking it off was probably the hardest part of it due to how adhesive the adhesive was lol. Slower than #Humira, quicker than an infusion, I’ll take it!

#Crohns #CrohnsDisease #IBD

Happy New Year, 2023 was good to me, health-wise. I pray 2024 may be good for you, especially if you suffer from chronic health issues! #ibd #ostomy #crohns #HappyNewYear

Managing Crohn's disease
Blood and stool tests help us see
Colonoscopies less

#crohns #colonoscopy #bloodtests #stooltests #haiku #poetry

https://www.medicalnewstoday.com/articles/fewer-colonoscopies-new-crohns-guidelines-emphasize-blood-stool-tests-as-management-tool

Progress is being made every day on the front lines of #IBD research. We know the answers are out there and will one day bring relief to those who suffer every day. Let's prioritize unlocking the causes, which will in turn lead us to cures.
#crohns #crohnsdisease #crohnscolitis #crohnsawareness #crohnswarrior #ibdawareness #ibdwarrior #crohnsdiseaseawareness #crohnsfighter

AbbVie trumpets Skyrizi's resounding win against J&J's Stelara in Crohn's disease -- Novo Nordisk buys rival to Bayer's kidney drug Kerendia in $1.3B deal -- AZ’s Tagrisso plus chemo get fast FDA review for lung cancer -- See more on our front page news http://bit.ly/w28kSd #novonordisk #bayer #kidneydisease #astrazeneca #fda #lungcancer #crohns #abbvie #jnj #skyrizi #stelara #pharma #pharmanews #biotech #biopharma #biotechnology #cafepharma

AbbVie trumpets Skyrizi's resounding win against J&J's Stelara in Crohn's disease -- Novo Nordisk buys rival to Bayer's kidney drug Kerendia in $1.3B deal -- AZ’s Tagrisso plus chemo get fast FDA review for lung cancer -- See more on our front page news http://bit.ly/w28kSd #novonordisk #bayer #kidneydisease #astrazeneca #fda #lungcancer #crohns #abbvie #jnj #skyrizi #stelara #pharma #pharmanews #biotech #biopharma #biotechnology #cafepharma