Thread by @rebelliousgut

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 📣 #IBD patients & caregivers:

#IBDPoll 1️⃣

📊Thinking abt your IBD needs, what's been the biggest hurdle to your care?
📝 In the replies, elaborate. What’s helped your care?

Please share your #PatientExperience w #MondayNightIBD 👇🏽

👨‍👩‍👧‍👦=Family
👩🏼‍🤝‍👩🏽=Friends
🥼=Specialist

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita #MondayNightIBD #PatientExperience
#IBDPoll 2️⃣

🧐Thinking about your culture’s expectations

📊 Have you tried Complementary and Alternative (CAM) Therapies (ex: ayurveda, homeopathy)?

What drove you to try these therapies? Please share your experience.

SE=side effects

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita Thank you @MondayNightIBD for shining a spotlight on 🌏 #SouthAsianIBD pt experience!

I'm Madhura from 🇮🇳, co-founder Team @ibdesis. We are proud to lead #PatientExperience on #MondayNightIBD!

We hope to improve care for our community around the 🌍 through @SouthAsianIBD.

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ Unique barriers to care for #SouthAsianIBD pts:

1⃣ No 👨‍👩‍👧‍👦/👩🏼‍🤝‍👩🏽support:
🚫#IBD knowhow &invisibility➡️🚫understanding
Pt blaming & 🚫#mentalhealth support
#SouthAsian social norms on 🧑‍🎓, careers & family roles - must be fulfilled inspite of illness

#MondayNightIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/
2⃣Stigma to IBD,✂️, 💊, ⚕️

🚩Myth of IBD as #diet dx - "cured" by diet/lifestyle changes

🚩🚫💊/✂️ - "dangerous" side effects, last resort options, sign of pt failure

🚩Social discrimination & judgement tows #IBD pts esp #ostomates

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/
3⃣Access to 🥼 & 💊 especially in #SouthAsia

🚫availability of #IBD specialists, multiD care inc nutrition & #mentalhealth & 💊

⬆️cost of 💊- unaffordable for most

🚫government support/assistance

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 4/

4⃣🌍Cultural sensitivity

Major hurdle for #SouthAsian diaspora

Language & communication barriers

Cultural differences not accounted for in #IBD care

⬇️ sensitivity to cultural differences = ⬇️availability of appropriate support

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 5/
⬆️⬆️of #CAM in #SouthAsian community for following reasons:

🚩Promise of "cure"/"no side effects" - unlike 💊

🚩👨‍👩‍👧‍👦/👩🏼‍🤝‍👩🏽 pressure

🚩fear of taking💊 long term

🚩⬇️access to specialist 🥼➡️diagnostic delays

🚩💊not accessible or affordable

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 6/

⬇️access to specialist & culturally sensitive🥼 & effective💊

⬇️acceptance & support

⬆️stigma

⬆️#CAM uptake

together lead to delays in care & poor QoL😨

Read more on this thread!

This is what we want to change through @southasianIBD!

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 🚧 to my care
1/ I've had #GI issues since childhood - cycles of diarrhea ⬇️ weight & malnutrition.
Tested for celiac& #TB put on courses of antibiotics & #glutenfree diet & had appendicectomy w/o major relief. Finally dx w #Crohns in 2019, at 24.
#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ Was grateful for my #dx after 15+ yrs of not knowing what was wrong w me.

Post #dx, I was on 5ASAs & steroids for a yr despite dropping to 34kgs & developing EIMs. Changed 4 🥼before #enteralnutrition, #IMMs & #biologics were prescribed.

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ In urban 🇮🇳, I have ⬆️ access to 🥼 & 💊. Situation in other parts of 🇮🇳 & #SouthAsian countries is dire.
Team @ibdesis often hears from pts who don't have access to 🥼or biologics in hometowns & countries & travel long distances for #IBD care #MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 4/ 💊affordability

Many 💊(esp biologics) > avg monthly income. In 🇮🇳 #IBD permanent exclusion for personal #healthinsurance policies. In any case policies mostly don't cover💊
I pay out-of-pocket for meds & it's a financial burden on me & family #MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 5/ Social norms demand I take care of family as eldest daughter, not be dependent. Creates dilemma: Do I spend on 💊to control Dx better & fulfill duties or pick cheaper 💊that protects family savings but ⬇️productivity & QoL?
💰is limiting factor
#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 6/ Dx & 💊acceptance

Social stigma that demands silence around #chronic bowel issues made it hard to seek help esp as I developed💩 incontinence. I suffered silently for months until my mom noticed I wasn't eating & insisted that I go to the 🥼
#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 7/ The #SouthAsian myths around IBD & meds made it hard to accept 💊escalation. I felt #IBD was my fault. I delayed starting a biologic by 1yr b/c I believed it was "last resort med" & a sign of failure to "correct" diet/lifestyle on my part.

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 8/ #PEG tube heavily stigmatised among pts & 🥼 - seen as end-of-road measure for terminally ill pts.

But #PEG feeds fixed malnutrition - ⬆️QoL

In turn helped me accept 💊 b/c I saw how much #stigma was holding me back from better #QoL

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 9/🔑factors in building acceptance

🔸Evidence-based education from GI & online resources like @ownyourcrohns' blog, @CrohnsColitisFn & @CrohnsColitisUK
🔸@ibdesis support grp
🔸mum's support

I work w @ibdesis & @southasianIBD to pay it forward🙏🏽

#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ I'd tried #ayurveda #homeopathy & #tibetanmedicine prior to my Dx to manage symptoms. They never worked so I'd decided not to try after being diagnosed. Has been hard to stay committed to this due to social pressure to try #CAM
#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ W #IBD in the #SouthAsian community, it often feels like everyone has an equal say in treatment modalities that a pt follows. A key point of contact from my fieldwork even shipped me #Tibetanmedicine from Dharamsala after hearing abt my Dx 🙈
#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ This also takes the form of pt blaming. An acquaintance berated me for taking #MTX & having regular🔦
Apparently, I was putting poison into my body when the real cause of #IBD was my "Type A personality" which would be cured by #ayurveda🧐🤯
#MondayNightIBD #SouthAsianIBD

@MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 4/ Pushing #CAM as show of support & as way of shaming pts ➡️ the same impact of brewing #mistrust in medical advise.

Education on #IBD + support from my mum helped me push back & stick w my 💊plan

Educating pt & 👨‍👩‍👧‍👧🔑to accept & adhere to💊

#MondayNightIBD #SouthAsianIBD