Thread by @crohnsbabble

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ I'm Sharan from 🇬🇧, co-founder Team @ibdesis. We are proud to lead #PatientExperience on @mondaynightibd to discuss specific aspects of #SouthAsianIBD experience. We hope to improve care for our community around the 🌍. #MondayNightIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ My initial diagnosis came after months of going back & forth w my GP who was reluctant to refer to a specialist because they were certain that my symptoms couldn't be due to #IBD. In their own words, "#SouthAsians don't get IBD" #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ This delay led to extreme weight loss and worsening of symptoms to the point where I was unable to get myself out of bed. I was admitted into hospital with my weight down to 28kgs, from 38kgs just months before.
#MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 4/ While I swiftly received #IBD dx under paed GI care in 🇬🇧, there were barriers to understanding the dx. English isn't my parents' 1st language & no interpreter was ever offered. Even as a paeds pt, it was my responsibility to translate for them. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 5/ When I transitioned to adult care, I ended up lost in the system; there was no real treatment plan in place & I spent almost 4 years on prednisolone due to recurrent #IBD flares. I thought my case was mild & didn't know I deserved better care. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 6/ These recurrent #IBD flares affected my university education. I felt like I let my family down by taking extra time to graduate. Relatives would often ask if I was ever going to get my degree. The lack of understanding & pressure was humiliating. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 7/ Education/careers are highly regarded in #SouthAsian culture - delay in my graduation due to uncontrolled disease was a source of constant judgment & shame. Many outside of my family didn't know about #IBD dx & assumed I didn't work hard enough. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 8/ I eventually switched to a new GI, who immediately started the process of escalating my treatment. He was appalled to see that I'd been kept on #steroids for so long through my teen years, with no attempts to try other meds. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 9/ IFX was approved after 2 rejections from NHS; this was a game changer & I finally felt like my #IBD was under control after yrs of managing on prednisolone. Had I known to push for this sooner, I could have prevented struggling through my degree. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 10/ Another impt barrier was #stigma around ostomies in #SouthAsian community. As I recovered from a subtotal colectomy, I started to see how much having an #ostomy improved my QoL. Reversal was offered as option 1.5 yrs after. I wasn't interested. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 11/ But family kept saying I needed to go back to "normal" & to consider marriageability. As #SouthAsians we don’t marry a person, we marry into a family. I worried that even if my partner was fine w my #ostomy, in-laws could be less accepting. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 12/ Despite being at my healthiest with an #ostomy, I went ahead with a reversal because of marriageability concerns. Having an ostomy also made my condition more 'visible' - reversal was an opportunity to hide my condition again to avoid judgement. #MondayNightIBD #SouthAsianIBD

@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 13/ I flared again only 6 mths after my reversal & it took 2 years of tests etc for switch to Uste. My motivation now behind the work we do as @ibdesis comes from wanting to ensure other SA patients make choices based on what's best for their QoL.
#MondayNightIBD #SouthAsianIBD