Thread by @ownyourcrohns

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ I'm Tina from 🇺🇸 co-founder of Team @ibdesis. We are proud to lead #PatientExperience on @MondayNightIBD to discuss specific aspects of #SouthAsianIBD experience. We hope to improve care & reduce disparities in our community around the 🌍 thru @southasianIBD. #MondayNightIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ Even though my dad suffered from #Crohns, when I presented with #IBS #constipation, #GERD, joint pains & eye issues as a child, no one made the connection or escalated it to a gastroenterologist. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ When my dad passed from #CRC, my family went into poverty & couldn't afford health insurance. Though I was symptomatic as a child, I didn't have a #colonoscopy until 22 when I got my 1st job. That's when I received my very delayed #IBD diagnosis. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 4/ To even get a #colonoscopy though was a challenge. My #SouthAsian GP didn't want to believe I could have #IBD given my SA descent in spite of the genetic factor. My GP only referred me to a GI when I insisted to him my father had #CRC. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 5/ As if that wasn't bad enough, there was a stinging #stigma towards #biologics & #ostomy surgery: I felt like a failure for needing IFX & then for needing that so-called "last resort," a stoma, which made me "unmarriageable" and "untouchable." #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 6/ I was originally diagnosed with #ulcerativecolitis & was told to opt for the #jpouch but I felt relieved by just having an #ostomy. I very reluctantly reversed to a j-pouch mainly because I wasn't considered "marriage material" with my #stoma. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 7/ When my dx was changed to #Crohns after my first RV #fistula was found, my husband was asked if he wanted to continue his marriage with me. Concerns around child-bearing had come front & center. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 8/ In all of this, what I struggled with most was my #mentalhealth. Each and every time my disease progressed felt like a further violation of my body. The fistulae and wound vac placement/cleaning were the most difficult especially on my womanhood. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 9/ Medical #PTSD from violating procedures while awake added to the deterioration of my MH; from nightmares to many tears, it took years of therapy to recover. It also took a lot for my therapist to help me navigate #SouthAsian cultural factors. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 10/ Food was yet another challenge. #Desi khana can be🌶️. People always looked at me like I had 3 heads when I would bring my own food to a wedding or a pooja. But samose, kachoriyan, chaat that I used to love would leave me crying in the bathroom. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @crohnsbabble @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 11/ I feel that the intersection of delayed dx/treatment w/ cultural factors alongside no proper med options (besides IFX) to treat my disease resulted in several surgical complications, #malnutrition and later, RV fistulae.
I want this to change. #MondayNightIBD #SouthAsianIBD