The Caregiver Mom

[annjaylee]

So thankful to find this sight! I do not have CP but my adult single son does and had necrotizing pancreas last July. Had major surgery to clean up the area's affected. Had 6 drainage tubes, a feeding tube in the small intestine, etc. His most recent issues have been with ascites and having to have paracentesis every 4 - 6 weeks. Docs can't understand why? He also has a stent in is biliary duct and one in a pseudo cyst. Last week after his paracentisis he developed an internal hematoma the size of an orange. It's a rare event they say. So currently, way underweight and eating as well as nighttime feeding tube. I would say in the last 10 months he has been hospitalized every month for one thing or another. The one big issue is the ascites.... Anyone have any suggestions to help that? On pain management, Infectious Disease doc, creon, lasiks, spirolactone, etc. This mom could use any and all suggestions to better care for him, ask doctors, etc. Thank you and wishing you all the very best of health and happiness.

[Skye_MC Administrator]

Hi annjaylee 👋 I'm so sorry to hear about your son! We have some resources on our website that hopefully can help.

Pain Management: mission-cure.org/tag/pain-m...

Creon (Pancreatic Enzyme) Dosing: mission-cure.org/dosing-pan...

Webinars: mission-cure.org/webinars/

Toolkits: mission-cure.org/toolkits/