Well, I just got back from the pancreatic specialist for a second opinion and, while I do have CP ('your pancreas is just not right") he feels I may also have Crohns. Has anyone else had this discussion with their GI and would you be willing to share your thoughts?
Thanks
Hey there! I was diagnosed with Crohns Disease (finally!!) after years of being told it was irritable bowel and nervous stomach. Was on a medication that I am at a loss at this moment to remember–was on it for years after they diagnosed the Crohns–prescribed by my gastroenterologist. When I was diagnosed in Neuro ICU with pancreatitis, was told that there was a possibility the Crohns medication could have triggered the pancreatitis.
They said I should never have been on that medication that long–it seemed to keep the Crohns controlled but when I thought I was having a Crohns attack, I look back now and realize it was the pancreas acting up years ago and I just didn’t realize it–didn’t know the pancreas was a potential killer.
Good luck with it all. Have they prescribed medication for the Crohns?
SAH
Thanks for the input. Nothing has been prescribed yet as there is no diagnosis. I have to have a gastric emptying study next week, a boatload of funky lab work, and we go from there. The GI also told me to change the way I was taking Creon to see if the diarrhea stops. If it does, then all bets with the Crohns are off and he will do an ERCP, EUS, possible stent placement, and talks of Celiac Plexus block. He is all for the block, I am not so sure. I spoke with an anesthesiologist friend of mine and these are quite temporary. All though, I guess 3-6 months of pain free is better than nothing. Main thing for me is stopping the diarrhea and pain - gotta live life, you know. Hard to enjoy camping with my scouts if I don’t have proper facilities…
Wow that is interesting, I had the stomach empyting test done last fall, really not much
help, but the doctor could tell me that my stomach was emptying fine. The only bad thing
was eatting cold cold scrambled eggs-yuck! they use radioactive dye and you have to have
exrays every 15 mins. so they can watch how the eggs go through the stomach to the intestines
but over all not bad.
Good Luck to you, and also I would be looking for a new doctor as well,
my doctors/nurses call me ASAP. My GI doctor didn’t seem to help me much other then to say that
I have CP/and CL, but my family doctor is on everything quick! he is the one that told me that
i had to see an Ongologist/Cancer doctor. Good thing I did because I found that I have a blood
disorder, and Autoimmune disease PLUS, very very low platelets. We are still trying to find out
why my body is eatting them up even after having a platelet transfusion. I see him again on the
18th of this month with having another blood draw on friday.
Ok good Luck to you, I am sending you
lots of prayer/hugs/love~~~~~~~~~Mrs Barb 
Macbeth,
Have you tried another pancreatic enzyme? I’m on Viokase after being on Creon with all the back pain. The Viokase has stopped the pain completely–it has been a godsend for me.
Good luck with all the tests!
Take care.
SAH
SAH
I have only been on Creon because apparently one enzyme is better for pain (Viokase) and one is better for diarrhea (Creon). The diarrhea is what sucks the most. 4, 5, 6 or more trips a day to the bathroom really eats into everyday life. And, like I mentioned, I am a cub scout leader and am in charge of activities for the boy scouts in my district. Tent sleeping is a beautiful thing but not being near the facility can cause issues. I will actually go all weekend without eating just to avoid any potential issues (keeping hydrated, of course). Although, I have yet to have an exacerbation during a camporee. I DO have an event coming at the end of this month and I told my GI that the diarrhea has to stop by then!!! This is the worst and longest lasting exacerbation I have ever had (going into it’s third month).
I will keep you all posted and if ANYONE has any suggestions, PLEASE let me know. 3 weeks and counting to “Mission Impossible” nighttime camporee…
Hugs and pain free wishes
Hi,
My daughter had the stomach emptying test done and showed very slow emptying for her. But then they realized she was on pain meds and that is a big factor in this test. If you take any narcotics for pain it slows everything down in your stomach. Don’t know if you are on any meds, but let them know that. The test showed nothing else, and at that point the doctor put her on a med that you take 20 min before you eat and it helps move food along. Well, that didn’t do much either. It seems to be all a trial and error—if they find anything they try to blame that. In her case, it was still the duct and nothing worked till she had the Puestow done.
Good luck with your tests. Make sure you get all copies of tests so you can review it too.
Terri
Thanks Terri - was your daughter put on Reglan (Metoclopramide) to help “move things along”? I have, unfortunately, gone this route not once, but twice, and Reglan did help to a certain extent but the side effect profile really stinks. The GI consult is leaning toward surgery as well but I am not so certain I want this right now. It is always the “lets try this, lets try that” thing. ERCP, EUS, stents, possible surgery. ERCP scares me as the last one punctured my bowel (although it was due to sphincterotomy) and the doc does not feel I am at any greater risk this time around as he has no intention of cutting. He is planning on a celiac plexus block, though. It’s just a wait and see. Some labs came back already, no inflammatory process going on (CRP normal, ESR normal) so Crohns may be out. 'LETS JUST WAIT AND SEE".
Thanks for the input
Hi Macbeth,
Yes, my daughter was on Reglan-and for her it did nothing. Glad it worked for you though. As I said with her nothing seemed to help due to the duct-even ERCPs just reclogged soon after. She even considered the block months after her surgery, because she still has pain-not as bad as before, but of course never goes away, but her GI specialist said no. He felt the relief is short lived and that if she had any kind of attack she wouldn’t feel it due to the block. She was happy to agree because she didn’t want to undergo another procedure for just a possible 3 day to 3 month(if lucky) pain relief. We are still working on what will help her, she is now on muscle relaxer med and it seems to help her alot. I think with all the cutting inside and scar tissue that sometimes it is difficult to differentiate the pain. But she is functioning and going to college and we are so greatful for that. She spent all last year in the hospitals and don’t want to go there again. Please ck with people who have had the block done. Just to be sure it’s what you want and not your doctor. Good luck
Terri
Can you tell me more about the back pain with Creon? I have been having
lwoer back pain lately. I’ve been on Creon for about 6 months. This back
pain is different from the normal pain caused by the pancreatitis. I never
related it to the Creon. I like the Creon for what it does for the
pancreatitis. It works better than the other enzymes I’ve been on, but I’ve
never tried Viokase. Your thoughts and help would be welcomed. I have also
been on monthly shots of Sandostatin and wondered if they could be causing
the lower back pain. Does anyone have any experience with Sandostatin? I
wish all of you a pain free day and appreciate everyone’s help. EllenC
Hi, all:
In following this thread, I wanted to add a few things-- just in case they may help anyone…
The Reglan can often cause very bad side-effects, but so can many anti-emetics (for nausea) in that basic class. Most of them have some of the risk, and having been through it pretty badly with several of them, including Reglan and others, I was eventually diagnosed with akathesia on top of dyskenesia (the Parkinson-like jerking and tightening that can be a side-effect) on top of an uncontrollable need to move/not sit still/run (and I’m mostly in a wheelchair-- especially back then!). The main treatment that they used in the hospital IV, and now, orally that I take with the awesome Zofran ODT for nausea, is Ativan. The drugs in this general class are known to best treat these side-effects, but the Ativan can also address the nausea and is fast-acting. I take it to prevent the bad side-effects and better help the nausea.
On the emptying studies, I had two different motility studies done-- the eggs and a “barium burger” study which included coating a McD’s hamburger bite with barium and watching it through x-ray until it went through and down to the bottom. My study took 12 days-- and the gastric emptying (egg) study was also very, very abnormally slow. These studies were years before the pancreatitis (at two years now) and I didn’t take any regular pain meds back then. Interestingly, while the diarrhea is common in pancreatitis, I only get the opposite problem-- and have recently had a completely rigid abdomen because of total impaction. I take about 8 times a normal dose of OTC and Rx laxatives and osmotics every few days to try to get my bowels to move and have not had much luck. The pain meds I’m on are transdermal and transmucosal, so not too much ends up in my GI tract-- And while I do have a spinal injury to blame, it’s been so bad since the CP that I’ve blacked out unconscious from it and the pain that comes with trying to get things to work.
I recently went on Viokase (had really bad cramps with Creon and was on Pancrelip until they recently substituted w/Viokase 16)-- and thought the comments about it were interesting since I’m new to it. I only take one about 6 times a day, and am hoping it will help the pain/back pain like it has for some of you, too. That would be awesome.
As for the Crohn’s that started this topic, they had suspected that in me, too-- but for now they think they’ve ruled it out. It’s always interesting to me how many overlapping symptoms and experiences so many of us have-- and I’m always wondering if there’s a link from all those things to the pancreatitis. So many of us have had or now have other GI stuff, from these things to esophageal spasm to a history of diverticulitis and so many other things. I can’t believe with so many of us overlapping in other GI problems that there’s not some link.
Enough rambling… I hope everyone is having some pain-less times and is hanging in there. I’m always thinking of everyone, even if I haven’t been up to writing much lately (and I do apologize for that-- it’s been bad enough lately to have considered heading for the hospital when the pain just can’t be controlled and I’m literally shaking and in tears-- I know you all understand and I do thank you for that). As always, let me know if I can help in any way and I’ll keep doing my best to get back to being a “regular” here. I’m really sorry, again, for my absence.
Take care and many hugs,
Lisa
Would someone be kind enough to explain what the purpose of the stomach emptying would be. I never had the doctor suggest it. I have the opposite problem, I suffer with constipation continuously and so the pain that I almost always have is that my food is not being digested properly. It would help me a great deal if I knew for sure. Thanks for any information you can give. LMA
WRT gastric emptying, Doc Karasik, in my case, is looking for a root cause of the nausea. Having had a Nissen Fundoplication, there is a secondary side effect of “Gas-Bloat Syndrome” where the stomach can not/does not empty quick enough, causing a full, bloated feeling. If the stomach is not emptying at a certain rate, this can be an indication of a bowel obstruction or stricture. Reglan is a class of meds used to “speed things along”, kind of like a laxative for the stomach. Again, I had great relief from the Reglan but side effects are very bad (and it is 4x/day).
Lisa - I hope you can find a way to speed things along in your case. Having never in my life had constipation, I can only imagine. Have they ever tried Zelnorm? I know it is now very restricted but maybe an option.
WRT back pain and Creon, I only get back pain when it penetrates from the front pain. The initiation of Creon made no difference. Sounds like maybe something else???
Regardless of the cause of pain, we are all in it and need to find an answer - prayers are all I can offer everyone right now so out I am sending them.