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Posted 9/26/2012 1:57 AM (GMT 0)
Thought I'd throw this one out there and see if anybody has had similar experience, even though it seems uncommon.  I had a CT scan today due to still having left upper abdominal pain even after stopping Imuran.  It came back mostly normal - liver, kidneys, gallbladder, bile ducts - everything normal.  The pancreas did come back 'mildly enlarged' although no signs of pancreas inflamation and no other issues.  Has anybody ever had this?  I'm waiting to hear from my GI on what I need to do, if anything. My left-sided upper pain is also in my back some of the time, mostly in the front and comes and goes. I can't pinpoint if its always just after I eat or not. I've been having alot of indigestion lately as well, especially immediately after I eat - the noises in my digestive tract could probably be heard miles away!

I'm a little disappointed in the test results - I was really hoping it would just come back with nothing and I could just chalk it up to indigestion or something low-key.  Just wanting to get better and getting discouraged when new things keep popping up. I'm tapering Prednisone right now, finally at 5mg, and was hoping I could make it off in a month or so.  Now another problem - very depressing!

 

Posted 9/26/2012 2:14 AM (GMT 0)
What are your pancreas enzymes at? Amalyse and those ? When I had pancreatitis it was blood results that yeilded the answers. Too get pain down I was on liquid diet inhospital
Posted 9/26/2012 2:15 AM (GMT 0)
I hope u feel better. Eat really low fat bland foods till u get more answers
Posted 9/26/2012 2:21 AM (GMT 0)
Forgot to mention my enzyme levels are slightly elevated, which is what prompted the CT scan (along with the slight pain in my abdomen).  Amalayse is 136 (normal 30-110) and Lipase is 299 (normal 20-250).  GI thought it may be the Imuran so I stopped that and the pain did seem to go away for awhile but its come back. I'll try the low-fat diet. I actually eat a low-fat diet mostly during the week anyway. Saturday is probably my "cheating" day where I eat whatever I want. Although the indigestion seems to happen no matter what I eat, even if its toast or soup broth.
Posted 9/26/2012 2:44 AM (GMT 0)
Yeah try to implement that lowfat bland diet as much as u can for awhile. Rest andplenty of clear fluids. No aggravators like caffenine and definetly NO alcohol. If I think of anything else I did or hospital did for me I will let u know. Hoping u see ur numbers lower and u feel better.
Posted 9/26/2012 8:09 PM (GMT 0)
I never have caffiene - that's one of my no-nos for my UC. I don't think I've had caffiene for over 15 years now.  I haven't had any alcohol since I started this flare back in January.

Strange even after eating soup I get some pains in my upper abdomen - it doesn't seem to matter what type of food I eat.  I assume this is pain in my pancreas but hard to tell I guess as my stomach makes SO much noise after I eat anything (and many other times during the day as well).  For me a bland diet is usually soup, toast, crackers, bananas, mashed potatoes and maybe fat-free vanilla yogurt.  None of those ever seem to upset my stomach or UC. I'm thinking my stomach is still a little upset from that barium I had to drink yesterday. 

SS0000 - What did you have to do to get your enzyme levels to go down? I'm guessing yours were alot higher than mine, at least what I've been told is they are usually alot higher when there is an issue.  Did you have inflamation in the pancreas as well? I just find it odd I have no inflamation but yet its enlarged. It would almost be easier if it was a 'normal' diagnosis.  I'm starting to wonder if I should start taking Prilosec or something similar for all the indigestion issues I seem to have with eating anything lately.

Posted 9/26/2012 11:03 PM (GMT 0)
I had to be in hospital for 2weeks on iv. Then weaned off onto broth, jello then juice and applesauce and few crackers and so on. Yeah my enzymes were high I went in because I. Couldn't. Eat or drink ANYthing without discomfort. Unknown still as to what caused the pancreatitis. I can't remember my numbers but they were higher then urs although it doesn't take much for pain I WAS also given prilosec or similar pill in hospital .
Posted 9/27/2012 12:02 AM (GMT 0)
Think I may pick up some Prilosec tomorrow, it certainly can't hurt and will be interesting if it helps me.  Maybe it will at least calm down some of the noises coming from my stomach.  I haven't eaten in a few hours and am not even hungry but my stomach is digesting who knows what right now - it sure is loud!
Posted 9/27/2012 9:25 PM (GMT 0)
Hi MNBeachgal,

I've had a very similar experience, in fact. about 6 months ago I began experiencing pain in my upper left quadrant after dinner one night. It was pretty intense and seemed worse when I ate or drank. Obviously I consulted Dr. Google and he mentioned that pancreatitis would present in just such a manor, so I scheduled a visit with my G.P and saw him a few days after the pain started. They ran my enzymes and my Lipase was also slightly elevated (about 2 times normal). The pain was significantly better and I wasn't hospitalized, but he sent me for a C.T.

My C.T scan also showed an 'enlarged pancreas', but no inflammation or other signs. The pain in my LUQ and back continued on and off for a couple months, and I was sent for an MRI/MRCP. The MRI revealed that I had a have an 'intrapancreatic accessory spleen' (Dr. Google can provide more insight on this), and I'm not sure if that contributed to the pain or not.

I've had my blood run several times since the initial visit, and my enzymes have always been normal since. For what it's worth, I've read from multiple sources that mild Lipase elevations often aren't indicative of pancreatitis, and can occur in patients with UC or might be totally benign - which is great news, but doesn't explain why you're experiencing the pain.

Unfortunately for me, my GI has had me stop using 5-ASA as it can cause pancreatitis and I'm in the midst of a bad flair that I'm (so far) unable to control with steroid enemas. Were you using 5-ASAs orally or in enema form when this started?
Posted 9/27/2012 9:37 PM (GMT 0)
Hi Mark,

That's actually why my GI suggested a CT scan, as he said sometimes the 5-ASAs can cause pancreas issues.  I've been taking 5-ASAs for over 15 years now. I started with Asacol then switched to Colazal about 10 years ago. I've been also using the enemas for about 5 years.  I just find it odd that they would cause issues after having no problems for so long. I read somewhere online that usually people have issues right away when taking them, can't remember where I saw that though.

I was taking Imuran back in July when this started. My GI had me stop the Imuran and the pain seemed to go away for awhile. Then it came back about a month ago so I decided to have my enzyme levels checked.  Mine aren't even twice the normal amount, but a little bit less than that.  I'm also on Prednisone but trying to taper off, although lately I've been having alot more gas, body aches and my BMs aren't normal (no blood though) so I'm hoping I'm not flaring AGAIN while tapering.  For now I'm also giving my system a break for few days and eating bland - it seems to help a little although all the noises seem to still be there.

I was reading about something called Autoimmune Pancreatitis - apparently although not common its more likely in people with UC. Strangely Prednisone is what they give you to treat it. It presents in a similar fashion with the left-sided pain mostly and elevated enzyme levels but not always pancreas inflamation (although usually an enlarged pancreas).  Apparently Mayo is the one who's done the most research on it, and that's where I'm going, so I'm hoping my GI would mention that if its possible. I'm going to call them tomorrow morning. Feel like I call them all the time, I always hate calling so much! But I'm going on vacation out of country in a week and I don't want to all of a sudden get some attack when I'm in another country.

Posted 9/27/2012 9:59 PM (GMT 0)
Yeah, I've read a lot about AIP (auto-immune pancreatitis) as well over the last few months. If you were taking the pred when all this started, it seems really unlikely to me that it's AIP, since every medical journal article I've read seems to indicate that a course of oral steroids is curative.

ASAs are considered a 'class 1 drug' (http://www.ncbi.nlm.nih.gov/pubmed/16082282) for drug induced pancreatitis, and unfortunately from what I've read it's possible to use them long term before they cause any problem with the pancreas. This certainly doesn't mean that they're the reason for your elevated enzymes and pain, but it's a possibility. In my case my GI thought it was enough of a possibility to warrant ending my treatment with rectal mesalamine altogether even though I had been using it for about a year, which is disappointing for me because steroid enemas aren't effective for me. But that's another story.

Anyway, I'm glad to hear you're feeling better. If you did indeed experience AIP, then prednisone is the right drug for it. Otherwise, it's possible that you didn't really experience pancreatitis at all (this is what I'm hoping for in my case anyway) or maybe you just had a 'mild case'. It sounds like we had a really similar experience with the slighly elevated lipase levels and enlarged pancreas. Keep me posted on what you find, and if you continue to experience pain maybe ask for an MRCP/MRI to further investigate the enlargement. It seems to be a much more accurate imaging tool than CT.
Posted 9/27/2012 10:41 PM (GMT 0)
Strangely, I had an MRI enterography back in July when this pain started and they didn't see anything wrong with me at all.  My GI actually said the CT is a better way to look at the pancreas, not sure why.  I've been on Prednisone since Jan, I sometimes wonder if tapering it brought out the pain, especially if Prednisone is supposed to help AIP. I'm hoping I don't have that though, and like you said hoping its nothing.  I really don't want to stop the 5-ASAs, they kept me in remission for 10 years. In fact, a previous (but briefly previous) GI I had last year told me to stop all my meds as he said I didn't have UC. Stopping the meds is what put me into this flare that I can't get rid of. So I know stopping them would definitely have a bad effect. I might have to try Methotrexate, I have a feeling my GI will suggest that when I call tomorrow as it isn't supposed to affect the pancreas like Imuran/6mp can. 

If I find out anything different than what you've found out, I'll let you know for sure.

Posted 9/27/2012 11:06 PM (GMT 0)
Ok let. Us know . Keep your chin up! Ps far reach but sometimes gallbladder issues can play a role if I remember right in the pancreas.
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