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AboutI have a ileostomy turned Jejuostomy (with severely high output levels 6-8L per day!) after my emergency surgery for a small bow resection was done in February 2021. Prior to that I had an emergency surgery that created my end ileostomy in 2020 Sept. after getting Short Bowel Syndrome from full removal of my entire colon, ileum, and about half or more of my jejunum, it is technically now a jejuostomy (often labeled high output ileostomy). The ostomy is one of the most difficult things to manage while also having short bowel syndrome, as this disorder is very rare yet the most terrible and severe digestive disorder possible (according to a credible source I read from Omaha, Nebraska Medical Clinic, or a similar rehabilitation for intestines clinic in Ohio, etc.
I am seeking support for sure, since I’m still new to all fo this…and definitely help with finding a supplier who works directly with my state Medicaid to get the coloplast high output 2 piece systems covered under insurance code (A4413).
I’m open to friends and or relationships, but I’m focused on my recovery / my health and managing my short bowel syndrome as best as possible without any physician in my state who has any experience with adult short bowel syndrome. I live in Georgia, and even Emory hospital of Atlanta has no physician or dietician in their gastroenterology department, as my Gi tried to refer me to.
I’m interested in bowel rehabilitation clinics such as the highly regarded one in Omaha, Nebraska, but open to any and all that will accept me and help with the financial burden possibly due to being very low income.
I’m interested in learning more tips and things that others may be able to offer!
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