How can I work when I never know when attackis going to come

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Hi! I have recently been diagnosed with chronic pancreatitis. My question is how can I work when I have an attack which usually sends me to the hospital for 3 days. Most employers are not ok with this. This all so new to me and I'm trying to wrap my my head around understanding this disease. Also is anyone out there affected by lupus as well.

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  • Posted

    Hi, I had acute pancreatitis in December, I know it’s not the same, however I have started taking a prebiotic and probiotic and I certainly tell that that my insides are feeling better, research diet and see how you get on, I don’t have lupus but I do have aps and a thyroid issue. 
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  • Posted

    I am in the process of getting a diagnosis, I have an autoimmune disease Relapsing Polychondritis, this has been on going since 2014 and was told it was gastritis, it was a stomach bug etc, I have been on methotrexate, Humira and have used NSAIDS for three years straight, I developed this problem while on NSAIDS, was only on Humira and Methotrexate for less than a year, now I have pain on right side under ribs just off mid centre, mild fat in stools nausea etc, also having symptoms of low blood sugar after eating..i have had CT scan, MRCP, and lastly a normal EUS, but I know its chronic, I was a drinker of wine and did over do for a couple of years to help my anxiety with this disease, so not sure what is the cause of pancreatitis, could be the disease or medication or combination. Im very very worried as I have read what a dreadful this disease is. its very depressing. I am experimenting with probiotics as well as I believe these diseases all start in the gut, there was a recent article of a study where using a probiotic helped alleviate the symptoms in Multiple sclerosis, the probiotic was Visbiome ( extra Strength 900 Billion CFUs) this strength is available by prescription only, give it a read, ill look for the link on the article, https://www.visbiome.com/  .

    https://www.healthline.com/health-news/probiotics-may-be-able-to-help-people-with-ms#1

    that's the article.

    Hope it helps you. I just ordered some 400 Billion cfu powder from Amazon.

     

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  • Posted

    Hi Michelle, with no info re how you were diagnosed, what's happening with your pancreas or who's treating you my response is fairly generic.

    You mention Lupus, I'll assume you have it.  I have Chronic Autoimmune Pancreatitis and prone to autoimmune responses.  If you have Lupus it could be the reason you also have CP.  Maybe, maybe not.  Alcohol consumption is a big indicator but my personal feeling is that there are a lot of people with pancreatitis who don't drink at all.  Idiopathic is when doc's don't have a clue why a patient has pancreatitis, there are other causes, certain drugs etc. 

    The most relevant point however is that regardless of why you have pancreatitis if you have it no type is better, easier, worse than the other (except CP I guess), Pancreatitis is Pancreatitis.

    You need a gastroenterologist who specialises in the pancreas, not a regular gastro and not your family doc.  You need periodic follow ups depending on your situation, every 3 months or 6 months is my pattern.

    Your diet needs to be modified strictly that means low fat, no alcohol, no cigarettes, forever!  Chronic Pancreatitis is progressive it doesn't go away and can be life threatening. 

    You really don't want to mess around with Pancreatitis it's like being locked in a toilet with a deadly spider.  If you leave it alone you might co-habitate safely if you're careful but if you prod it or annoy it in any way it can attack with a possibly disastrous result.  Remind yourself of that whenever you're tempted to ignore 'the rules'.

    You need to take digestive enzymes like Creon before you eat anything. 

    Less when it's a snack, whatever amount works for you pre main meals.  Finding the amount that works for you is all about personal experiment, we're all different. 

    I take 100,000 immediately before a meal, that's worked for the past year however as I'm now having digestive issues within 15 minutes of eating for the past couple of weeks I have to experiment again with a higher dose until I find an amount that works for me.  I often have to take more mid meal or immediately after eating.  I take around 60,000 before a snack, whatever it is. 

    I settled for awhile and last check up I was told I no longer have malnutrition but still take supplements of course, however that was a month ago and now I'm having issues again so I'll have to see my specialist again soon.

    To help with nausea I take a PPI which helps enormously and is common for people with Chronic Pancreatitis.

    I no longer get severe pain (fingers crossed it doesn't return) so I don't take pain meds specifically however many people do.  Opiates tend to be the first stop for pain but they're really only good short term and can cause other issues.  I recommend a pain clinic to determine what works for you.

    The best advice I can give you is to follow the only rules that work in a general sense.  Follow a Low Fat Diet, Eat small meals throughout the day rather than 3 large meals a day.  Never consume alcohol, no cigarettes, take digestive enzymes and possibly a PPI with pain management as required.  good luck

     

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    • Posted

      Thanks. They are not sure why this happening Not a drinker. Did have pancreatic stones also did have gallbladder removed a few months ago. Going to dr. to discuss things in a couple weeks. Thank you for your advice. Greatly appreciated.

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