sharan Profile picture
Feb 2 5 tweets 16 min read
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 1/ When I transitioned to adult care at 17, I felt like I was stuck in a constant loop of tapering off prednisolone, flaring, and then ending up in hospital on IV steroids only to end up on another course of steroids for my #IBD.
#MondayNightIBD #SouthAsianIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 2/ After speaking w/ a friend who knew someone w #Crohns, I decided to try #CAM. I didn't know what else to do. The promise of a "cure" & feeling defeated by the constant steroid cycle I was prescribed drove me to seek out another option. #MondayNightIBD #SouthAsianIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 3/ Family had planned an 🇮🇳 trip. The journey to an ayurvedic clinic took hrs & we waited ~6 hours only to spend 5-10 mins w/ the #ayurveda specialist. Nothing was asked about my history w/ #Crohns; I was sent away w/ tablets wrapped in newspaper. #MondayNightIBD #SouthAsianIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 4/ My parents paid ~ £250 🇬🇧 for 3 months supply. I saw no improvements from trying such expensive tablets. I wish I hadn't trusted someone to give me tablets w/ no indication of what was even in them but I was so desperate to stay off steroids.
#MondayNightIBD #SouthAsianIBD
@rebelliousgut @MondayNightIBD @southasianIBD @ibdesis @Empoweringpts9 @DCharabaty @ownyourcrohns @LivingWithUmeed @vkckiranpullela @TheMaveilousGut @dunung_ruchita 5/ With alternative therapies, the risk of side effects is often left out. The natural assumption is that there won't be any. I was very lucky to not have experienced them, but that might not have been the case for someone else. #MondayNightIBD #SouthAsianIBD

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More from @crohnsbabble

Feb 2
@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
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