pancreatitis

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. 

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

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  

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. 

Gosh!! I do hope you are better soon!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

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. 

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.

 

remicade. .been there. until antibodies developed.

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

 

Hey there, here's an update....I developed strange side effects from Remicade. I began having mini seizures, it's the only way to describe it. I have a weird anxious/excited feeling then there's pain in my muscles and I loose strength in my arms and neck and I drop whatever I'm holding, and I loose strength in my legs and then I usually have to drop to the ground. I began having this reaction to all biologics I tried so now I am on budesonide and it is working well enough. The GI doc keeps trying to put me back on biologics because my last ileoscopy/endoscopy showed inflammation last year. I haven't seen a neurologist and I don't really want to add any more clueless specialists to my list. This seizure thing happened a lot when I was on biologics then it completely stopped when I started budesonide. But... I did have a minor episode recently which I cannot explain and that worries me. I also had a severe episode of tachycardia a few days after being under anesthesia for the ileostomy/endoscopy last year. I went to the ER, saw a specialist, had some tests done and they said it was an electrical issue in my heart and that I might need an ablation at some point. The whole thing was pointless except I did learn the vagal maneuver from the awesome ER doc which I use all the time now to normalize my heart rhythm and rate. I wonder if anyone else has had neurological issues from being on biologics....or tachycardia from anesthesia....??? 

Have you figured out what's going on with your pancreas?