Living w #IBD & an #ostomy. #Migraines. #ChronicPain. #PTSD. #Patient #Advocate. @ibd_hu Showing others they aren't alone in their struggles! 🤗
New Jersey
Joined October 2012
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Marisa Troy retweeted
#MondayNightIBD #IBDPoll2️⃣
Reflecting on Intestinal Ultrasound (IUS)
What is appealing about IUS over other monitoring tools? Would you prefer IUS - why/why not? 🤔
Please answer the poll & share your experiences in replies ⬇️
#PatientExperience #SouthAsianIBD
79%Non invasive / No prep
16%Done by GI at the appt
5%Shorter wait time
0%🔽Cost
63 votes • Final results Marisa Troy retweeted
📢#IBD patients & caregivers:
#MondayNightIBD #IBDPoll1️⃣
📊Thinking about your IBD experience, what mode of disease monitoring do you prefer to stay on top of your care? 🔽
In replies, please share your #PatientExperience, preferences/barriers to monitoring ✏️
#SouthAsianIBD
25%Blood/stool tests 🩸
25%Colonoscopy 🥼
12%CT / MRI 🩻
37%Intestinal Ultrasound 📡
51 votes • Final results Marisa Troy retweeted
🙏🏽Patients, advocates & caregivers for sharing their journey w us!
📡 Scanning #PatientExperience on disease monitoring & #IUS w @rebelliousgut leading the convo
🗳️2 #IBDPolls👇🏽
📣RT & share your💭 w us!
#StrongerTogether #MondayNightIBD
Supported by edu grant @EliLillyandCo
Marisa Troy retweeted
Honored to have spoken to DPT students at @Hunter_College @CUNY on #physicaltherapy in #painmanagement!
PT
👉🏽 critical in my #IBD surgery recovery
👉🏽 managed #pelvicfloordysfunction
👉🏽prevented prolonged use of pain meds
Important for med students to learn from patients 🙏🏽
Marisa Troy retweeted
This Pride Month on Lights, Camera, Crohn’s a look at the most common concerns & patient experiences, helpful guidance to support the LGBTQIA+ community, the added risk factors & screenings, tips for communicating with your care team, and much more.
lightscameracrohns.com/2023/…
Marisa Troy retweeted
Webinar 👩💻 Supporting young people with a #stoma: current challenges & future directions: bit.ly/StomaWebinar June 7th, 6.30 - 8pm BST.
I'll be there 👋 talking about unmet needs & the importance of advocacy groups such as @IBDSuperHeroes. PLUS...
Marisa Troy retweeted
I MAY be looking for people with, or who have had, #ColorectalCancer for some paid interviews. I was just wondering whether there's anyone in my current network that might be interested if that project moves forward? #ColonCancer
Marisa Troy retweeted
Calling all #IBD #AYA patients & #caregivers, tune in today to @MondayNightIBD’s #patientexperience co-led by IBDesis’ patient advocate @mahaparakala & @AaronBlocker_ 🙌🏽🙌🏽
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Marisa Troy retweeted
A Call to Action, US colleagues and people with #IBD, please take a minute:
crohnscolitisfoundation.org/…
Marisa Troy retweeted
Today is Day 2 of #CCAwarenessWeek!
I've chosen to make #IBDvisible by sharing a photo of the completion of my 10 hour #TPN infusion.
This is how I #gratefully begin every day!
#IBDCantStopMe
#CrohnsDisease
#ShortBowelSyndrome
Marisa Troy retweeted
Day 2 #CCAwarenessWeek!
Thank you to @healthcentral for featuring me alongside other #Crohns warriors on what has worked for us in living our best lives!
Read here: healthcentral.com/article/cr…
Marisa Troy retweeted
Another 'oldie but goodie' from the #IBD blog vault is our Traveling with #IBD and an #Ostomy
@JournalingIBD recorded it back in 2016 but it's still relevant today and might prove useful when traveling for the holiday season.
cceffect.org/traveling-with-…
Marisa Troy retweeted
Bit of a niche tweet, but is there any known association between #IBD and thyroid disorders?
Marisa Troy retweeted
Apparently yesterday was #WorldIBDDay2022. I am so thankful for scientific advances in medication that allow me to live a pain free life despite having Crohn’s. 2003 to 2012 were quite the ride living with chronic pain before I started taking biologics
#IBD stands for Inflammatory Bowel Disease.
NOT
- inflammatory bowel syndrome
- irritable bowel disease
#WorldIBDDay #WorldIBDDay2022
Marisa Troy retweeted
This is an excellent point! The chronic inflammation from #IBD commonly causes:
Persistent diarrhea
Abdominal pain
Rectal bleeding/bloody stools
Weight loss
Fatigue
Along with a LOT of other symptoms both along the GI tract and elsewhere in the body
#WorldIBDDay #WorldIBDDay2022
#IBD stands for Inflammatory Bowel Disease.
NOT
- inflammatory bowel syndrome
- irritable bowel disease
#WorldIBDDay #WorldIBDDay2022
Marisa Troy retweeted
From running out of medicine, to fleeing Kyiv, and sending her daughter on a train so she could be safe. Hear what an #IBD mom in #Ukraine has to say about what it's like to live through a war right now while trying to manage ulcerative colitis.
lightscameracrohns.com/2022/…
Marisa Troy retweeted
Restrictive eating happens for lots of reasons. ARFID & disordered eating are real.
But those w/ IBD often restrict d/t fear of symptoms, cultural beliefs. Not same as ARFID. Need nuanced thinking on this...
@DrTiffTaft recommend using Fear of Food Questionnaire. #CCCongress22
Marisa Troy retweeted
Shout out to my friend, @Empoweringpts9 who texted me non stop all night checking up and offering support through my prep. Told her my alarm was going off at 3 am, she texted me at 255 to see how I was. I’ll never forget it. 💜
Marisa Troy retweeted
Invisible does NOT mean imaginary. An estimated 157 million Americans are afflicted by chronic illness.The US Census Bureau measures that 96% of all chronic illnesses are invisible. Just because you can’t outwardly see an illness doesn’t make it any less real or valid. #NEISvoid
ALT Invisible does not mean imaginary
ALT “The US department of Health and Human Services estimates that 157 million Americans are afflicted by a chronic illness and the U.S. Census Bureau estimates 96% of chronic illnesses are invisible”.
Marisa Troy retweeted
#IBDPoll 2️⃣ #MondayNightIBD #PatientExperience
🤔Think about the above tests commonly avail to monitor #IBD
📊If your #GI offered intestinal ultrasound (#IUS) in office, how appealing would it be for you as a test to monitor your #IBD activity & help make treatment decisions?
67%Very
0%Not At all;don't want 2 c
12%As good as other tests
21%Never heard of it
75 votes • Final results