How many of you have had this happen?


#1

Well, before I get to the question, I want to apologize to everyone for being so absent and distant this last month. December was not my shining moment month, that’s for sure. Aside from seeming to be sick quite a bit of the month, recovering from the dog bite, and my frustration and withdrawal from the world, I did have some technical issues as I built a new computer and learned how to work with a 64-bit OS. I was also hoping to be able to report something of note with the new GI I am seeing.

As some of you know, I have recently started seeing a new GI at the University of Washington. Last February when I had my first EUS done, the GI specifically mentioned the ducts being enlarged and that if I didn’t change my lifestyle I would loose my pancreas in 5 years. At first the GI I was seeing seemed so much better than some of the ones that I read about here from your experiences. Over the last few months, he seemed to fixate on enzyme levels for some reason. He would also imply that I was a closet alcoholic who was still drinking daily. I got pretty tired of it all and had my PCP refer me to UW. I was hoping to at least find out a little more.

Now, it looks like there are more questions than answers. Last week I had a mesenteric doppler duplex done to measure the bloodflow in my abdomen. Nobody really expected it to show anything, but it was done to rule anything else out. It came up normal as expected.

Yesterday I had an EUS done. I was wondering how this would come up as it seemed as if my pancreas was getting worse. I seemed to be having attacks more often and vomiting quite a bit more. Well, imagine my surprise when the doctor said that the ducts appeared normal and there was “minimal” damage to my pancreas. He went on to say that in his opinion (the doctor who did the EUS is actually my GI’s partner so I haven’t discussed the EUS with him yet) the damage to the pancreas could not account for the severity of my pain and other symptoms!

I was just wondering if any of you have had similar accounts. I know from past posts that some of you have had less than great experiences with doctors, nurses, and staff, but I can’t remember if this exac issue has been discussed before.

So I was just wondering- how many of you have been told that the damage to the pancreas does not match the severity of your symptoms? I am feeling somewhat frustrated and perplexed. I am tempted to stop taking my meds and not even bother with specialty doctors anymore. Do I have something else going on, is it all in my head, or is the doctor just mistaken?

Any input would be greatly appreciated and I resolve to be better at posting and responding this year. Hoping for minimal pain for all.

Thanks,
Warren


#2

Hi, Warren and all:

A few thoughts on this, too… First, my SOD (sphincter of oddi dysfunction) was first diagnosed by an MRCP (just like an MRI with contrast, but with an added feature that not all places have access to). It’s again, been through all the repeated ERCPs and sphicterotomies, Botox, stents, etc. that I GOT the CP!!! That’s not too unusual from what I’m finding from the “experts.” We all risk acute flares from ERCPs, but repeated procedures, and especially with the dye that’s often used in ERCPs, can and does in some cases lead to CP over time. The pancreas is easy to “piss off” and doesn’t like to be messed with. The best advice I think I’ve gotten is to not have any ERCPs at all… and if I have another biliary/pancreatic duct constriction, DON’T let them use dye.

Also… after my ‘failure’ at Mayo with the Celiac block and other problems, and getting the pain back under control, I was left very much in the dark, with no instructions or follow-up, but with the info that the pancreas allegedly “looks fine,” although the ganglia (nerve bundles) and lymph nodes were both enlarged. The biopsies on the nodes were negative, but no one has a clue on the enlarged ganglia-- even Mayo. Well, after getting the pain back “down,” relative to the post-Mayo crisis anyway (they upped my patch since then and am still using about 6 doses most days of the Fentanyl Transmucosal), with nothing other than how I was feeling to guide me, I decided to drop the Viokase 16 and went back to “normal eating” to see what would happen: All that’s changed is that I maybe feel a little better and at least have more energy. While I’m still not eating enough, it’s the best it’s been in years. In addition, some of my docs are still insisting my “flares” of horrible pain and nausea, biliary blockage aside, is still CP (but the Mayo docs also told me I don’t have the/enough markers).

I think that those of us who have had pancreatitis, acute or chronic, know that pain and it’s always seemed very distinct for me at least. I’m learning not to trust tests (I’ve had torn ligaments and breast lumps that didn’t show up on MRI’s, ultrasounds, etc., but were all visibly surgically and VERY much real and there!)-- but to trust how I’m feeling and go from there.

I think the more we can believe ourselves and hopefully find a physician to validate that one way or another, the better we’ll feel… at least we aren’t left questioning if it’s real or not. The pain is very real, the nausea/vomiting is very real, and a study or test not showing it doesn’t mean it’s not very real and really there.

I wish you all the very, very best and hope that many of you are getting some pain breaks and better luck and advice.

Hugs and love again,

Lisa


#3

hey guy, IT IS NOT IN YOUR HEAD!!! i am pretty sure this is what we all have resorted to a time or two, asking is it in my head? my answer to this is NO IT IS IN MY STOMACH !!! stand strong and STAY on your meds, i am now flipping over to a private message, so i will talk to you in a min !!!

Julie


#4

hello warren happy to see you back. yes i have lived exactly what you speak of. im not sure if you remember my story. i had severe pains went to er many times to be sent away until one day my blood pressure went so low i was admitted into the ICU. my gallbladder was removed with more then 100 stones and some in my common bile ducts blocking the pancreas.

i went home but still pain continued on and off and nausea was a daily issue.i was admitted again in ICU for acute pancreatitis. i went back to my surgeon who referred me to a gastro doc who did the EUS on me checkin to see why the back/stomach and nausea continued after the removal of gallbladder and stones from the bile ducts. he later said that the pancreas looked good but, that does not mean you do not have pancreas problems. he continued to say that it may take up till 5 yrs for any damage to show in the pancreas with continued bouts. he also told me that the pain is not an indication of how bad the pancreas is or is not.

i have not returned to him since then which is my fault. ech time the pain rolls in i think this is it im heading to the hosp but, soon i am able to control my symptoms and ride it out. i do know the day will come when i will need to seek medical intervention due to the enormity of pain or the pancreas adventurely takes on a new form and causes additional problems as in diabetes. so i guess the answer to your question is yes some doctors do not believe that the pain we feel is solely related to the actual visual appearance of ones organ. as if a doctor can say if you have no broken bones why do you have pain in them. cause there is no visual break does not mean there is not a problem with them. i at times think the medical profession is as ignorant as some stories we hear. on another note has any1 ever heard of john of god in Brazil.

he is a natural healer whom many have gone to for spiritual surgeries sounds crazy but true they say millions he has treated and thousands he has saved all spiritually done. i watched a documentary on discovery channel and googled him its quite remarkable. if anyone has time to google him im sure you will be surprised and amused by his stats and procedures for treatments/surgeries. i may take a closer look. hope your recovery is going well from the dog attack and know i and many know that the pain we feel is real. wishing all a better day then yesterday.

nancy


#5

Dear Warren,
Hello. I am one of the newbies here. I joined in Nov. just after a 6 day hospital stay for an acute attack. It was my 3rd confirmed(by bloodwork) attack in 2 years. But I have had many, many flares that I “knew” were my pancreas and I was able to control things. My PCP suggested I was probably turning CP due to the extended high levels of lipase and pain. But according to the specialist, I am the enigma we hear about, I don’t drink (haven’t at all in 6 years, casual before that), healthy gallbladder, no meds that cause it, NADDA! They have done mri’s, mrcp’s, cat scans, xrays, ultrasounds(external and EUS). They found NOTHING! All my organs look healthy, even the pancreas for the most part. They did find “striations” on it, they call that a marker for CP but only if I had 4 other markers to go with it. Since my Nov 07 acute attack I have not had a pain free day, not one! I have “begged” for the ERCP and they have cautiously refused due to the possible acute flare. Yet they said that if it is the sphincter of oddi dysfunction that it will only show on the ERCP. I am also losing my trust in doctors. My old GI gave me enzymes during an acute flare. The pancreatic specialist said he didn’t understand why the other doc did that. In my opinion it helped my pain level. So now I don’t have enzymes, I can’t take any pain meds stronger that a tylenol3 due to stomach sensitivity, and I have lost almost 20 lbs since Nov. Luckily I have had extra to lose ;o) Any way, our stories are not exactly the same but I have also experienced different info from the docs, and they even contradict themselves. So frustrating!!!
I go back to discuss what’s next on the 16th. I tend to “lighten” how bad things are, so I am taking my very stubborn, addement husband as my advocate!
Keri


#6

Wow, thank you for all the responses and affirmation of my sanity (well, at least partially)! It has helped allay my despondency quite a bit. April (my wife) helped as well saying that I had I read too much into it, that he was much less demeaning than I felt. Still and all, the continual back and forth drags. BTW, Keri, belated welcome to the forum.

Keri, I can’t remember if anyone has stressed this to you before, but please get the enzymes through whatever doctor it takes. These are your primary line of defense between you and your pancreas. At the bare minimum, it will help you digest your foods for better nutritional absorption. At the best, some people have reported a lessening of pain. Most people will have less nausea, vomiting, and steatorrhea as well.

Even with a “full arsenal”, there will be flares that still break through. You might find that a good proton pump inhibitor or H2 blocker (e.g., Zantac, Prevacid, Nexium, etc…) helps as well as many people’s pancreata are sensitive to highly acidic conditions. If you are still experiencing flares, then you need to look into alternative pain medicines. You might be able to tolerate something like methadone as that is an opioid agonist. Counterintuitively, it actually has a good record as a strong analgesic. I have a friend (whom I met coincidentally on a herp-related forum) who has sarcoidosis and he uses that for pain control. There are also some newer drugs that work through different ways than the typical natural and synthetic opioids. Hang in there!

While I have not followed all of the forums here at CarePlace, I have checked many of them and this one is really stellar. There is so much support and caring in this little nook and it is made by the people who participate ( as well as the CarePlace team that has allowed us this space :grin:). When I first joined, there was not one single post on this forum! I decided to reach out and see what would happen. It was like the walls of a dam had burst! :slight_smile:

Suddenly people started posting left and right. Almost everyone has carried the torch at one time or another with Durga (I will respond to your PM later today when my brain is not fogged by the middle of the night. lol) and Lisa carrying the torch for the most part recently. When one of us falls by the wayside, someone else is always there to carry on. Many, many thanks to all. Wishing everyone as few pain and nausea-free days as possible for this New Year. While this year has started a little rough, I guess that I will give it a chance. lol (I didn’t even mention dinging up my year-old Jeep on the 1st! lol

Thanks,
Warren


#7

Keri: I agree with Warren that you need to get some enzymes and start taking then every time you eat. Your story is like many others. You have all the signs of CP, but none of the ones that some doctors are looking for. Don’t get discouraged. I got CP from an ercp. It all started out with gallbladder problems, but when the doctor did an ercp he nicked my pancreas. That was over four years ago and it’s been all downhill since them. If you have not had a day without pain since Nov. you are probably going into chronic pancreatitis. That is how it developed with me. I am now on constant pain meds and enzymes and praying for some relief. Hang in there and I hope that you and your husband can get some good answers and some help when you see your doctor on the 16th. Keep us posted and take care.
Ellen


#8

Ellen,
Thank you for any info. I tried to get the pancreatic specialist to give me the enzymes and he said it wasn’t necessary. I need to write things down that I want/need to mention so I don’t forget on the 16th.

Lisa,
Thank you for your advice as well. That is so true, that it is all about how we feel. I know I have had flares that have not been confirmed by bloodwork/cat scans ect. Yet, I actually had a cat scan that showed nothing but the next day had an MRCP that showed distinct inflammation (AP), so no test is 100% as we all know. But it seems that dr’s see this everyday, yet have so much trust in these tests, I just don’t get it! The biggest problem is getting the dr’s to be our advocate. My PCP was more of my advocate than anyone so far docter wise and he felt “at a loss” as for what else to do for me. He has always been willing to admit me if I needed it or whatever. I just wish it wasn’t so hard for so many.

In spite of the bad things, if it wasn’t for my pancreatic issues, I wouldn’t have met all of the wonderful people here on this board. I truely do enjoy coming here.

Thanks
Keri


#9

Lisa,i totally agree with you about drs. and tests, we just have to listen to our own bodies, we know them the best !!! love to you isa and everyone else !!!

have a happy day !!

Julie


#10

Once again trri you are right on the money with your answer. the tests often do not show what really is going on. as with myself i was back and forth to the ER for 3 mos with my pain in my back/belly at times i could not even sit still i was on the hosp room floor hanging myself 4ward on all 4s rocking because the pain was enormous.

when they took my cat scan and sonogram neither showed i had stones in my common bile duct. yet when my urine turned brown and my blood pressure dropped so low i was admitted for emergency surgery of my gallbladder which it was then and only then that they realized i was loaded with stones in my common bile duct.

i believe if they would have taken me seriously from the start i may of never developed the pancreatitis. the surgeon told me that by the looks of my stones they had been in my common duct for some time.so i must agree with you terri that even scans do not show many problems and the only way to know what is going on is to take a visual look.

nancy


#11

Hi Keri,
I have been reading your entries and I am so sorry you have pancreatitis. I don’t have it, but my daughter and husband both have the hereditary kind. So, we have spent many years, many surgeries, many drs. with this.
You wrote that your dr. won’t give you enzymes-why? Even if he doesn’t believe in them, it’s your choice. Above all, they can’t hurt you-hopefully they will help you, but there is nothing in them that can do you harm. Most GI drs. push the enzymes-it’s all they can relate to the pancreas, so I’m surprised yours is saying no.
It often amazes me that so many drs. will tell the patient that everything should be fine, especially if a test shows little. Sometimes, believe it or not, the test can be wrong. Perhaps the angle is off when an xray is taken, or the machinery at each hospital taking the test isn’t as precise.
My daughter had one MRCP done at our local hospital that showed nothing, I told her specialist(in another state)-he saw the xrays, and yet still insisted on an ERCP-when he went in, the duct did have blockage-he told me, sometimes tests don’t show everything!!!
So you are not crazy wondering about this pain-it’s coming from somewhere and don’t give up till you get an answer you like. Have you tried any inflammatories-we get Toradol IV in the hospital and that helps alot.
Good luck with everything and I think it’s a good idea your husband goes with you-he watches you suffer every day and can tell the dr. what he sees.
Keep up the faith and strength-we are all rooting for you!!!
Terri


#12

Hey Terri,
Thanks for responding to my posts. I am not sure why the dr. won’t either. My old GI (who I will not go back to) told me that the enzymes would stop my pancreas from producing as much of it’s own amylase and lipase thus reducing the pain, which it did to some extent. Now I don’t know if it was power of suggestion, but I think this pain is sooo bad that power of suggestion would not work! This new doc is a pancreatic specialist and when I said this info to him, he put his hand on his chin in wonder and said "Hmmmm, I don’t know why he did that. " So I said do you think I should take them and he said since he didn’t find CP then no. So I don’t have any to take. It is not that I don’t like this doc. I am just frustrated with the whole darn situation! I am kinda scared to go thru the ERCP for a fear of a bad flare. Lately I have been having more tolerable days than bad days so I just don’t want to screw that up. I just want normalcy, as much as I can get. I want to see what happens at my next appointment next week. I might try again on the enzyme front, like you said it can’t hurt.
Thanks Keri