As Addyson is getting older more school kids are asking her questions about her tube. I think she understands it but has a hard time explaining it to other. So below I am going to try to answer the basic questions she gets asked often
What is that? It’s a cecostomy tube. Also known as a c tube
How long will she have it? We are not 💯% sure.
What does it do? It helps her colon. She does daily flushes to clean her colon.
Why does her hips hurt at times? She has bursitis in her hip but also has some pain due to nerve damage. We are working with a pain management team to get it controlled
Will her colon ever be fixed? This is a tough question to answer. One dr has an idea about a possible issue. If he is correct then another surgery might help. If not she may always have issues
What other diagnosis’s does she have? Slow colonic transit, chronic pain disorder (functional abdominal pain disorder), anxiety, intractable constipation, febrile seizures, fever disorder, thrombocytosis (working with hematology and oncology on this piece), neutropenia, and anemia of chronic disease.
Can she take the tube out? No. If it falls out a new one must be inserted within two hours or it’s a surgical fix
Beaming with hope 