Crohns and Pancreatitis ? Anyone else ?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

justarose4him
Veteran Member


Date Joined Feb 2004
Total Posts : 730
   Posted 9/13/2008 5:26 PM (GMT -7)   
A few months ago I was dx with severe pancreatitis ...shock of all shocks! Well, after lots of tests my lipase is still really high ...BUT .. my CT scan didnt show anything ...and more importantly I don't have the severe pain that would come along with lipase levels of 740 or 120 , or 400 ( which is where it is now )

My new GI just told me thursday that now he doesnt think I really have pancreatitis ...but that my lipase is high because of the crohns being out of control... but ..I don't think my crohns is out of control ...aside from having 2 fistuals ...I am not sick ...I have been much much worse over the years

I am totally baffled ...the only things I am completely bothered by now is severe fatigue .... I can't seem to stay awake even during the day - and this is from a person who never in my life took naps ; I was at my sons bb game today and fell asleep in the midst of it in my chair ... I don't understand it ..and i have pains real bad in my feet and legs

Okay ..what would any of that have to do with pancreatitis or high lipase levels

I am so confused and well have this terrible feeling like I am going to die ..like something is wrong and no one knows it

why do I feel that way ?? I don't really expect answers ...I only wish I had someone who could answer ... I am feeling so helpless

anyone ....
Dx with Crohns 25 years ago
1 surgery ; 16 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  cymbalta, dIovan HCT, tramazone,
Remicade, FML (eyes ; steroid ) , Restasis (eyes)   
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/13/2008 5:53 PM (GMT -7)   
Misterie, I have pancreatitis too... My lipase levels are also high... Has you doc given you anything to help lower your
levels. I take tricor.
It's so important to get your levels down, as these will create further problems for your pancreas.
As far as it showing on ct, it often doesn't, you often need special tests done.
I really hope that this will pass, and that you'll have no further problems, but please keep an eye on things. My acute attacks
caused damage and scaring to my pancreas, so now my dx has changed to chronic pancreatitis. Not fun!!
If I can help in anyway just let me know... Good luck hon.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/13/2008 8:50 PM (GMT -7)   
If you have active fistulas you have gut inflammation. The source of the pancreatitis is the immune reaction in the gut. It kills gut bacteria which release endotoxins which then pass through your permeable gut wall (Permeable because of inflammation) into the blood. The liver normally removes such toxins from the blood, but since there is so much of it (there are a lot of bacteria in the gut), the liver is not able to remove it all. The endotoxins are very toxic to the pancreas and can actually destroy large parts of it especially if you drink any alcohol at the time. The fatigue is also due to the endotoxins - think of it as a massive bacterial infection without the usual sore throat, fever and congestion. You probably get more endotoxins in the blood from Crohn's than from any normal infection/fever. The best solution would be to do whatever it takes to get your Crohn's into remission. Maybe try an enteral diet for a week or so? You are sick, but your meds are covering most of the signs of being sick. You might talk to your GI and ask about polymixin B to help eliminate the endotoxins. See: http://cvi.asm.org/cgi/content/full/6/6/844 under the discussion section near reference (51).

justarose4him
Veteran Member


Date Joined Feb 2004
Total Posts : 730
   Posted 9/14/2008 5:48 AM (GMT -7)   
Thanks for your input ...it is really appreciated ..Keeper my sed rate is within normal range so wouldn't that mean I am not in a flare ; dont' they judge inflamation by the sed rate ? ?

And Vicky thanks so much for sharing ....but can I ask you did you have pain before it turned to chronic ? While your levels were high did you have the signs of pancreatitis with pain ? See , I don't have pain ( ???? )
Dx with Crohns 25 years ago
1 surgery ; 16 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  cymbalta, dIovan HCT, tramazone,
Remicade, FML (eyes ; steroid ) , Restasis (eyes)   
 


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/14/2008 7:14 AM (GMT -7)   
Misterie,
Yes I did get pain, in fact, I was hospitalized twice. The pain is usually felt high in the upper abdomen, and can be felt through to your
back. It's a very different pain to CD pain, so you wouldn't confuse the two. You also become very distended, again higher up in the
abdomen area. I also vomited, and at times had a problem breathing due to pressure...
When my attacks were at their worst, mt triglyceride levels soared to over 2000. They have slowly come down, but there are still sitting
around the 400 mark. Normal would be around 150. My sed rate is normal also.
Another thing, sometimes my lipase is normal, but blood fats ( triglycerides) are above normal, and I don't always have pain...
I think you're going to be ok, but I would insist they keep an eye on things....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/14/2008 1:38 PM (GMT -7)   
The sed rate may be influenced by your meds - not sure here, so ask your GI. The question is, does your immune system have some bacteria to fight? Since you have fistulas, there are obviously some bacteria active. Do you have enough to cause the pancreas reaction? Can't be sure from here, but maybe your GI can order a test for endotoxins? There is a simple test and if positive, you might want to ask for a prescription for polymixin B (an antibiotic that binds with endotoxins). This would have to be with your GI's approval, of course.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/14/2008 3:48 PM (GMT -7)   
Keeper, keeping on the subject of the pancreas, but straying off course a little.... Do you know of any connection between CP (chronic Pancreatitis)
and lupus. My ANA levels are high, and it was my pancreatic specialist that ordered the test. I was assuming there may be a possible link, but to
date I cant find the connection. But obviously he thought there might be.
I am taking Humira, so that in itself could be the problem. But I'm still confused and frightened!
Thanks for allowing me to pick your brain....
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/14/2008 4:23 PM (GMT -7)   
Your doctor probably wanted to check to see if your pancreatitis was due to Lupus. Lupus is most often discovered by diagnosing related conditions - ones that occur together with Lupus, probably due to auto-immune reactions. Crohn's is quite capable of causing pancreatitis all by itself, so there is no requirement that Lupus is involved. Still, it would be good to be sure.

dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 9/14/2008 5:51 PM (GMT -7)   
Thanks Keeper, you have at least told me more than my very elusive doctor. I've never had anyone quite so hard to get a hold of!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


starrnr
Veteran Member


Date Joined Dec 2005
Total Posts : 1782
   Posted 9/14/2008 8:48 PM (GMT -7)   
Misterie, with regards to sed rates and 'signs' of inflammation. I have always had "normal" readings of my sed rates and CRP (?) rates -- even in the midst of my worse flares. It's now a joke (not funny really) between my rheumy and I when he orders blood tests. He has never relied totally on blood tests for me -- they are not an accurate reading of what's happening with my inflammation.

So to answer your question about this (...my sed rate is within normal range so wouldn't that mean I am not in a flare ; dont' they judge inflamation by the sed rate...") -- they shouldn't use this as the only means to determine inflammation; it is not always accurate.

Sorry you're having such a time...it's been quite awhile, hasn't it?

~S.
Some days you're the bug, some days you're the windshield

RA, AS, intolerance/sensitivity to gluten, wheat and dairy.

Back to Enbrel 5/08 (I've gone full circle!), also currently taking .7ml (17.5 mgs) injectible Methotrexate weekly, 2 mgs Folic Acid daily


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/15/2008 11:12 AM (GMT -7)   
misterie, I agree with starrnr. I have been telling my dr for 2yrs when I have flares. They do the SED and it says, nope. He FINALLY did another colonoscopy and found out I have, (what he called), deep inflammation that does not register. It has caused my stricture to become as narrow as a very skinny pen. SED rates are not the tell all and have all of dx's. If only dr's would get this!
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 7:50 AM (GMT -7)
There are a total of 2,732,941 posts in 301,071 threads.
View Active Threads


Who's Online
This forum has 151225 registered members. Please welcome our newest member, Milenita.
290 Guest(s), 13 Registered Member(s) are currently online.  Details
tickbite666, Hungrydude, AnxiousTexan, sararaewald, jujub, iho, steveinErie, pmm73, time2reclaim, Traveler, k07, straydog, racquetball74


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer