Discover and read the best of Twitter Threads about #CrohnsDisease

Most recents (14)

My daughter has #crohnsdisease. I was told today that @AnthemBCBS will not allow her RX for another THREE WEEKS. Her dr. say she needs the RX every 4 wks; @AnthemBCBs says 8 weeks. 1/x
@AnthemBCBS Right now, she's got the same symptoms that escalated last fall into 2 hospital admissions, one operation, and a feeding tube. That time around @AnthemBCBS initially DENIED coverage of the RX that got the flare under control. 2/x
Only after several applications did they cover the RX at HALF the frequency her dr ordered. And so we are back here, worrying about another hospital admission. I don't like outrage porn, but please RT. I've seen Tweets move medical bureaucracy and @AnthemBCBS needs to move. Fin/x
Read 4 tweets
Today’s story about being a professional sick person is all about how I almost lost more than $75,000 in a morning. No, really.

As I was waiting for the nurse to call me back for my infusion this morning, I got a phone call. #crohnsdisease #ibd 1/24 (Long thread apologies)
It was the financial office for my infusion center. Funny, I replied, I’m sitting right here waiting for my drug. He said, that’s why I’m calling. You can’t get your infusion today. *cue record scratch, heart pounding stomach dropping panic onset* 2/24
I switched to this center less than a year ago because of how horrific my previous center had been. They’d messed up my prior auths, submitting late several times, cancelling my appointments because of their mess ups, never owning up to their mistakes, gaslighting me. 3/24
Read 24 tweets
There’s been some questions recently here about the types of #IBD research that @CrohnsColitisFn supports. I want to highlight some of the innovative projects that we are working on to bring us closer to our vision of a future free from #CrohnsDisease & #UlcerativeColitis.
.@CrohnsColitisFn is proud to be a collaborator on over 200 #IBD research projects in the US & around the world that are helping to improve patient quality of life and bring us closer to cures. Here are some examples:
We support the work of researchers at @ut_dallas who developed and are testing a wrist-watch like device that monitors sweat for biomarkers that could indicate an #IBD flare: crohnscolitisfoundation.org/blog/researche…
Read 13 tweets
Hey, new followers👋🏻
I’m Emma! I'm a #FamilyMD who did a fellowship in #WomensHealth.
I recently moved to #YYC 🗻
I do #gyne, #FMOB, #transhealth, #menopause, #pessaries, & more!
I’m a proud #abortionprovider (surgical/medical) ✊🏼
I live with severe #crohnsdisease.
Stay safe!
To be clear: I do not have a general family medicine practice ☺️ I have a specialized practice at this time!
While I’m honoured to have received so many messages, I cannot triage consults on Twitter. Referrals need to be made to my office by your family doc (unless you require an abortion, pap, or want to talk about contraception — no referral needed then!)
Read 4 tweets
Hot off the press! SIEDS 2021 - edas.info/p28115#top work by our @uvadatascience MSDS students Marissa, Tyler, Surbhi, Clair & @UVA Radiology PGY3 Dio + @yashsharma0906 @sauravsen111 — using #MachineLearning to classify #crohnsdisease MREs 1/
Our challenge was working with a sparsely labeled dataset with no annotations - we build 3 separate models & showed that a patient level model using multi-frame input (like humans do when we scroll through an MRE) had the highest accuracy! 2/
@JKurowskiMD @satishev @therealjonadill - would love your thoughts! @IBD_FloMD next steps for us will be to see if we can predict subsequent B2 (stricturing) / B3 (penetrating) disease using baseline MRs from patients who were B1 inflammatory at diagnosis!
Read 3 tweets
Delighted to share a new study from our lab on the role of gut commensal fungi mycobiota in shaping the human protective IgG antibody repertoire @CellCellPress cell.com/cell/fulltext/…
During immunosuppression ( organ #Transplant #chemotherapy ) or in diseases such as #IBD #crohnsdisease, gut #mycobiota can turn into a “reservoir” of pathogens, BUT most people live peacefully with their fungi. Do they benefit from them? Do fungi benefit form us? Neutral rl.?
Fungi are considered a minor component of the gut #microbiome ( less than 0.1% of genetic material in feces), but we found that fungal biomass in the healthy human gut makes considerably more: up to 2%.
Read 13 tweets
Importante hilo sobre Vacuna contra CoVid particular atención a pacientes con Enfermedad Inflamatoria Intestinal #crohnsdisease #colitisUlcerativa
Traducción de la Mesa Redonda c expertos del mundo de Enf. Inflamatoria Intestinal (EII) este pasado lunes en
@MondayNightIBD

🔺 #vacunaCOVID19 & #EII

Formato de preguntas y respuestas
P1. @DCharabaty Empecemos con lo básico: Las dos vacunas aprobadas de SARS-CoV-2 (Pfizer y Moderna) son de RNAm. Cómo funcionan?
Read 52 tweets
2/18
Which of the following agents is not a TNF-alpha inhibitor?
3/18
TNF-alpha inhibitors were initially developed for sepsis and underwent studies in animal models. After successful results in patients with rheumatoid arthritis, these agents have been widely evaluated in other chronic inflammatory diseases.
ncbi.nlm.nih.gov/books/NBK48242…
Read 18 tweets
1/ Today is World #IBD Day. Here is my #CrohnsDisease story: buff.ly/2TkWenc When considering my post for today I've been reflecting on why awareness days are important and with that I began to think about the history of IBD: how patients were treated in the past, what
2/ treatment options were available... So much has changed and it is all because of people sharing their stories, the hard work and dedication of our GIs and other clinicians, and the money and support that came from advocacy which led to where we are today. It wasn't that
3/ long ago that patients were being blamed for their IBD. It was thought that they had a "mother fixation," marital problems, and so on. A disease of the psyche. Patients were taken away from their families and isolated and went through unimaginable things. Lobotomies were
Read 16 tweets
Due to the high volume of #COVID19 #IBD patients @nyulangone , we developed a management protocol that incorporates #COVID19 severity, risk factors, and #IBD activity. We recognize this is a challenging time and we look forward to further guidance and input into our protocol.
We look forward to input and we are aware #Hydroxychloroquine is becoming increasingly difficult to find in #NYC pharmacies #IBD
Read 5 tweets
A New Year, New Therapies! An #IBD #medtwitter #tweetorial

As a late ring into the New Year, let’s explore Novel #IBD Agents coming to practice!

Our Aims:
1️⃣ Understand the Nomenclature
2️⃣ Revise Currently Available Drugs
3️⃣ Discuss Mechanisms & Adverse Events of Novel Agents
First, do we even know what are we treating ⁉️

Studies 🔬 within each one of these four key elements have unveiled pathways involved in #IBD pathogenesis.

Some of which are amendable for potential therapeutic intervention…
In summary...

It takes a genetically susceptible host 🧬 to be exposed to a specific environmental agent 🦠 that, through a weakened intestinal barrier ⚔️, will lead to an exaggerated Immune activation🔥, responsible for the phenotypes we see in clinical practice!
Read 25 tweets
Aujourd’hui, journée mondiale des MICI, petit thread sur ma vie avec une maladie de Crohn. @afaCrohnRCH #TousEnViolet
1/ J’ai appris que j’avais crohn il y a cinq ans. J’avais 20 ans. J’ai eu mal au ventre pendant des mois avant d’oser aller en parler à un médecin. Et oui crohn ce n’est pas chic et aller parler de ses selles à 20 ans ce n’est pas facile.
2/ J’ai d’abord tenté de me voiler la face. Je me répétais que ça allait passer, que c’était rien. Au fond, j’avais peur. Ma mère a été malade 20 ans et diagnostiquée pour un crohn qui n’en était pas un. Je ne voulais pas. Je n’avais jamais pensé pouvoir avoir cette maladie.
Read 17 tweets
Here’s Evanna our Gastrointestinal Surgery Dietitian in MDT Pre-Op clinic. Dietetic advice is key to help prepare a patient for better surgical outcomes incl. reducing the chance of stoma formation and reducing hospital stay for patients with #CrohnsDisease #Gisurgerydietitian Image
Evanna is involved in surgical prehabilitation for gastrointestinal surgeries.
Here's more on the importance of the role of nutrition and exercise: anesthesiology.theclinics.com/article/S1932-…
Nutrition is a modifiable risk factor for post-operative outcomes. We must identify ‘at-risk’ patients early to help prevent malnutrition @StGDietitians
#WhatDietitiansDo #NutritionScreening #MUST #PreOp #Patientflow Image
Read 13 tweets
1. If you want to understand what causes Crohn’s disease, ulcerative colitis, or actually many other chronic illnesses, and why most medicine doesn’t seem to treat it, I want to explain what may be happening. (thread)
#crohnsdisease #ulcerativecolitis #ibd #chronicillness #crohns
2. This hypothesis is a collaboration between my wife and I, and is based on longstanding research + some new studies that have come out in the last year or so.
3. Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract. Like many of the other inflammatory bowel diseases, it can be a debilitating illness that makes life a living hell. If it gets bad enough, it can kill.
Read 75 tweets

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