Pancreatitis

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newnormal

I was doing okay for a while. My Crohn's has been calm, ileostomy working well, but my pancreas isn't happy. I had my first attack of acute pancreatitis over a year ago and I was told it was caused by azathioprine so I was taken off it. About a month ago I ended up in the hospital again for a few days with acute pancreatitis, and then had another attack about a week ago. I have been losing weight and am extremely fatigued. I will see a pancreatic specialist in a week. I will have more tests done, but most of the tests so far have come back ok except of course my enzyme levels which are off the charts. Doc thinks maybe it's autoimmune. Apparently AIP is fairly common with IBD, and Crohn's patients are more likely to get azathioprine induced AP. I have searched this site for similar stories and found some but most of them are no longer members. Has anyone who is currently a member gone through something similar?

I am taking enzymes and eating a very low fat diet. Haven't had any alcohol in years. Having Crohn's, ileostomy and pancreatitis really limits what I can eat and drink. Trying to go with the flow but am getting really sick of being sick.

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Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 33,099 members. Get inside and you will see.

We're not all about ostomy. Everything is being discussed in the forums.

It's a very special community, embracing all ages and backgrounds. People are honest and truly care.

Privacy is very important - the website has many features that are only visible to members.

Create an account and you will be amazed.

iMacG5

Hey Newnormal, I need to explain.  I hit "liked" though I dislike everything you're going through.  What I liked is that you're reaching out and sounding as strong as anyone could imagine with what you're going through.  My thought is you might try other sites with forums of wise, caring folks like here but more familiar with your situation.  Please keep us posted on your successes.

Respectfully,

Mike

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Bill

Hello newnormal.

I cannot offer any words of wisdom on this particular topic,  but I would like to thank you for the concept and the title of my next rhyming verse which will be 'I'm sick of being sick'. 

For the most part, I just get on with my life and take chonic illness in my stride. However, every now and then I become melancholic about the whole sickness thing and wonder how long I can stay positive. 

It is people like you(and others who share their stories on this site), who have so much to put up with and do it with dignity and perseverance, that gives me strength and hope to carry on.

I thank you for your contribution and I hope that you can very soon link up with others who have similar experiences you can share.

Best wishes 

Bill  

newnormal

Thank you both for the support. That's what I like about this forum in particular, I am a member of a few other forums/online support groups but they are not as welcoming.

I just made a big bowl of pho with fresh ginger, tofu and some basil from my garden so that made me feel good.

freedancer

Gosh!! I do hope you are better soon!

 
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newnormal

So, here's an update. I have a very rare complication of Crohn's that affects the duodenum and pancreatic duct. The doctor was really surprised! (Doc also said type 2 autoimmune pancreatitis could be involved as well).They put me on Remicade infusions and so far so good. Problems with billing and locations of infusion centers, but that is another topic. For the first time in many years I don't feel my pancreas spasm. Will have another endoscopy in a few months.

warrior

thank you for sharing this story.

my amylease and lypase were triple didgits in sept 2023.

then ken butt surgery in oct.

both levels fell to within one point of norm levels.

but c.t showed dialated pancreatic duct in august.. yet nothing was done abt it.

i have no symptoms to cause alarm.and levels appear much better after recent blood work.

a c.t. is ordered tho just to check on it.

i hope it is not from i.b.d.

but wouldnt be surprised if so.

this illness is like a deadly work in progress.

pm me if u like or reply here. 

would like to how you are doing.

 

warrior

remicade. .been there. until antibodies developed.

you have blood work done to monitor this? i sincerely hope it helps you.  thanks for the update.

 

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