Hereditary chronic pancreatitis
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hello, my name is Emily and i have been dealing with chronic pancreatitis since i was 10 years old and i am now 22. it started with an acute episode in 2010 and reoccurring episodes ever since. I had my gallbladder removed in 2011 when i was 12 because my Dr believed it was causing it but since i had episodes after that he sent me for genetic testing(2014) where I found out that its hereditary. Ive been on enzyme replacement pills such as creon/zenpep since 2016. My most recent hospital stay june 2021 was my most painful to date with even Dilaudid not cutting through the pain and vomiting pure stomach bile mixed with old blood every 2 hours. A CT scan revealed necrosis on my pancreas that they believe is sterile. if i were to estimate how many episodes of pancreatitis I've had, id say between 50-60 as I've had more than 4 a year since it all started.
Even between episodes I find myself in some sort of pain, feeling fatigued, nauseous even if I don't actually vomit, and recently I've been losing weight despite not trying to. I've found that THC in edible forms can relieve some of the symptoms like pain and nausea.
What I want to know is of there is anyone else with the hereditary form of this chronic pancreatitis and what your timeline looks like. I also wonder if this affects my immune system because i seem to not fight off infections as well as i used to. I've been dealing with pneumonia for over 2 months and then when i started to feel a little better i caught a cold and the symptoms of pneumonia came back but with added sniffles like a cold that weren't there before. i did take all my antibiotics the full course and only felt better during the 5 days i was on steroids.
if anyone one out there can help me or has shared experience please reply 😀
PS: if you are a woman with this illness id like to know of you were able to successfully have children im very scared about how pregnancy would affect me
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