Chop called!!!!! Can’t say it was all good news but it wasn’t all bad. Dr Boyle told us at least we know where we stand. He diagnosed her with: Internal anal sphincter (IAS) achalasia, failed emg and slow colonic transit. (Below are links to both diagnosis’s). The good news is that dr Nasr at Hopkins did a great job at removing the redundancy within her colon. The part left has no redundancy!!! (This is good news) Our dr at chop is going to send his thoughts to Hopkins so we can try to make this all work. We are trying to trust chop but it’s hard our local care team is Hopkins and that is where we would need to go for an emergency.
https://www.ncbi.nlm.nih.gov/pubmed/19782306/
https://www.betterhealth.vic.gov.au/health/ConditionsAndTreatments/slow-transit-constipation
Again this week is ostomy awareness week so I’m posting some pics of Addyson and her ostomy. Some say it’s hard to look at but this is her life. This was needed! She is strong. she has had a dislodged tube, tons of granulation tissue, Sibo and a infected tube over the past year but she smiles and pushes through. She is tough! She has dealt with the people who don’t understand tubes. She has become a tubie warrior….tubie strong! 💪🏻
Beaming with hope 