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Veteran Member

Date Joined Feb 2003
Total Posts : 1954
   Posted 8/28/2017 11:00 AM (GMT -7)   
In Dec I had 2 surgeries, one resection and another because of an anastomotic leak. I received an ileostomy bag and still have it.
Since then I've been in the hospital twice with severe dehydration, my electrolytes have really been out of whack. I've also developed some kidney injury because of these episodes. The ileostomy is stealing much of the fluid I take in. The hospital has been getting that under control.

While I was in there, I had belly pain radiating to the back, so we were thinking the crohn's was back. They took another CT which showed no crohn's but that I have scarring, irritation from chronic pancreatitis and 2 stones in the tail end of the pancreas. They said they can't get to them because they are in the narrowest part of the tail and to try would injure my pancreas even more? This pancreas thing is new to me. They sent me home with CREON and sodium bicarbonate. I can't help but question how many times I had pain coming from the pancreas and instead the doctor was treating me for crohn's?

If anyone has both, please let me know how you are doing with the pancreatitis? Not wanting to put my head in the sand about the diagnosis, I decided to read up on it, and now I'm somewhat discouraged? Thanks

Veteran Member

Date Joined May 2012
Total Posts : 3314
   Posted 8/28/2017 1:39 PM (GMT -7)   
Not fun! I ignored my pancreatitis for probably a good month before finally going in. It was the first time I chose to go an urgent care instead of an ER, and then the lab results showed elevated lipase and I got sent to the hospital anyway!

Mine wasn't caused by stones like yours, but was a side effect of the imuran I was taking. So mine was considering recurring acute. However, I've been able to live a pretty normal life. My pancreas acts up when my Crohn's majorly acts up, but otherwise it's okay.

You may need to have a diet adjustment - very low in fat, oils, etc. That makes your pancreas work harder. Hopefully the stones will break apart and pass and the meds will help your pancreas not have to work so hard.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

Veteran Member

Date Joined Feb 2003
Total Posts : 1954
   Posted 8/28/2017 4:24 PM (GMT -7)   
Thanks, your response is encouraging. My lipase levels have always been over normal but they attributed that to the crohn's disease. It was well over the mark when I went in this time.

I've been on Imuran in the past, azathoprine a few times and then again was put on it in Dec while in the hospital. I got really sick and asked them to take me off it. I never could stay on these drugs for long, always got sick with this family of drugs.

I went in for dehydration, so was a little surprised to hear about my pancreas.

Wish there was something to prevent further damage or more stones?

They didn't tell me in the hospital to eat low fat, Although I've never been able to tolerate rich stuff (deep fried and greasy stuff)
They were trying to fatten me up because I lost so much weight. I appreciated the double gravy they would send. That, I could eat, LoL.
Isn't the Creon supposed to help with breaking down of the the fats in foods?
I've noticed that my ostomy output now looks a lot smoother and more broken down than before, which was either straight fluid or very chunky as in losing unabsorbed foods.
However, one of their meds are giving me terrible heartburn/reflux which
I had under control before with Prevacid. They put me on pantoprazole, saying that it was a better one to take with CREON? So far, not for me?
Anyway, thank you for the encourgement, hopefully it will be as you say and the stones will break up on their own.

Veteran Member

Date Joined Mar 2007
Total Posts : 1774
   Posted 8/28/2017 5:43 PM (GMT -7)   
Hope you're feeling better soon. Aren't the stones coming from your gallbladder? would gallbladder romoval not solve the problem?

Veteran Member

Date Joined Feb 2003
Total Posts : 1954
   Posted 8/28/2017 6:50 PM (GMT -7)   
Thank you for the well wishes. No, they aren't gall bladder stones, I was told that my gall bladder is fine. They are calcium stones in the tail end of the pancreas where it is the narrowest and hard to get at to operate. I am also concerned about the chronic inflammation in the pancreas. I already have scar tissue there and damage, so don't want anymore of either.

Regular Member

Date Joined Nov 2015
Total Posts : 273
   Posted 8/28/2017 6:59 PM (GMT -7)   
Just curious, do you take any imodium to help slow down your output and decrease dehydration?
28 year old female
Issues began in July 2014
Capsule endoscopy in late March 2017 showed "suspected Crohn's Ileocolitis"
After colonoscopy on April 14, 2017, was officially diagnosed with Ulcerative Pancolitis (w/ backwash ileitis)
Current meds: Apriso 4 x daily, Prednisone 30 mg, Canasa 1000mg suppository nightly, B12 injections monthly, 50,000 IU Vit D weekly
Started Remicade July 11, 2017

Veteran Member

Date Joined Feb 2003
Total Posts : 1954
   Posted 8/28/2017 7:53 PM (GMT -7)   
Yes, but they found I was losing the pills whole in the ostomy bag so now have to get the liquid form of imodium. Sometimes it works, other times the stoma has a mind of it's own and is hyperactive no matter what I do.
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