Lisa:
Hi, I’m fairly new to careplace.com and was wondering if you are the one who
has scheduled a consultation with Dr. Sutherland at the University of
Minnesota in regard to islet cell transplantation for your chronic
pancreatitis? Thanks!
Cristie
Thanks for the info on Viokase. I am on Creon and have been having low back
pain. I had no idea that the Creon might have something to do with that.
Has anyone else had this problem? Do you take the Viokase in place of the
Creon?
Dear Lisa: Taking pain medicine for pancreatitis is not a disease like
alcoholism. You are not taking pain medicine because you want to. You are
taking it because you have to. I used to feel the same way about taking too
many drugs, but my great doctor just told me to stop it. He said: “You are
a fine, upstanding citizen. The pain you have is real. We have to treat it
and the university doctors who do research on this stuff are telling us that
we have been too conservative with pain medicine for pancreatitis patients.
So take your medicine and stop suffering.” These were his words almost
exactly. You don’t know how much that helped me. Lisa, don’t be so hard on
yourself. Your pain is real and if you need meds to have a life, that’s
what you need to do. Until they find a cure, I have decided that I am not
going to guilt myself anymore regarding drugs. I hate them and don’t want
to take them, but I also don’t want to live in constant pain. I hope you
can find some relief. We are all pulling for you!
Lisa,
I used to not even take aspirin! I also lived without necessary pain medication for my Chronic Pancreatitis for 10 fo the 12 years that I had it. I HAD to see a pain medication specialist because I was going to the ER to get only very temporary relief when things got bad. Now, I am on 200 mcg of fentanyl (patches that I change every 3 days) and also have 4mg dilaudid pills for when I have worse pain than usual. Then I go to the ER when that does not work only again to get temporary relief. Did you know that people who take the heavy narcotics do not get “high” on them and, this is a real kicker, they also do not become addicted to the medications like a drug addict! Sure, you can’t just stop them; instead you just wean off of them gradually as onne can actually suffer from something as bad as a heart attack if they stopped cold turkey off of heavy narcotics.
Right now, some of you may try to get this done as well, I am working with my PCP to get what is called a :spotlight" put in my electroic records with Kaiser that states: “If this patient comes in with severe pancreatic pain, she may request to be placed on NPO and on IV for 5-6 days or until the attack has passed and her pain has been greatly minimalized. You are to give her this treatment upon her request.” Obviously, I will not abuse this right as I only need to do this about 3 or 4 times each year. Talk to your doctor about this to see if there is a way for you to have such an order when you go to the ER anytime and any day at all!
GENIEANN: I am sorry to disillusion you! When I was a man, I WAS told that it was all in my head. I am still told the same thing sometimes now as I am a woman now. This is not a “sexist” disease from my experiences on both sides of the fence.
BEFORE I go to the ER this is what I do. I go on a clear liquid diet and add dilaudid to my pain medicine regime. If this goes on for 3 days, I continue and notice that I take in less and lesss fluids and only enough to get the medication down (I go up to 12-16mg of dilaudid). By then, I can’t get up anymore (not even to go to the bathroom), I am curled up in a ball and in so much pain that, when the ambulance comes, the techs have to lift me off of my bedd with a sheet onto the gurney. By this time I am so out of it and so sick and in so much pain that I can;t talk above a whisper and only briefly.
Right now, I am on my way to such an attack and can gamble that in 12-15 days I will need to go back to the ER. I will not go there again UNLESS I have the spotlight. I told them that I will kill myself before I go to the ER to be treated like crap by doctors that know nothing. I even have my suicide kit ready when I feel that it is time to go! I believe in rational suicide and I am a member of FINAL EXIT so that I will die with dignity. Nice place to be at 56 years old, eh?
My thoughts are with all of you.
Anyse
Anyse,
Thanks for reaching out to me; it is very helpful. I hope you can find some
peace. We must remember all the good (try to think outside the pain).
Smile TODAY
Lisa
Hi, all…
I was thinking last night of that saying “if you hear hoofbeats, think zebras.” I think the docs need to be able to sort out what’s going on, and not make assumptions based on the ‘easiest’ diagnosis or treatment. I think our CP is often the zebra that is masquerading around as horse! Stay strong and hang in there to all-- this is one horrible, tough disease, but we’re all strong and know what we need.
I’m so happy (and jealous, in a good way) of those of you who have found those “good” docs who you don’t have to fight with or defend yourself to. You are very fortunate. It’s still amazing me how many of us are running into similar problems with their docs–PCPs, ER/hospital docs, and most surprisingly, GI docs.
If I made a poor assumption last night in my post that a reply was to me-- I thought later it might have been addressing the post before it re: willingness to use the patch/pain meds. As much as I despise taking anything at all, I’ve learned that this pain gets insurmountable at times and goes on and on and on… and that pain meds are one of the key ways to “treat” it while trying to get the pancreas to chill out. Having passed out 4 times just from high pain levels in the past year-- even while taking the pain meds-- I sure do get that you can’t manage the pain or disease without them.
This is still where the problem with my PCP doc (I want to state more directly that Dr. Kalloo was never involved in any of these problems-- he did the best I believe he could do-- and was always very caring and nice)-- and I just got to read this morning a copy of his last Hopkins admission/discharge report-- He was repeatedly saying my withdrawal reactions when he dumped me off everything was “anxiety,” which is the same label he put on the “akasthesia” I got from the anti-emetics (nausea meds that cause all kinds of body jerking and agitation, etc.). When Ativan helped the symptoms, which is what you’re supposed to give for this reaction, he again labeled it as my “anxiety.” Try going cold turkey off all narcotics/opiates without having a body and mental response that feels out of control. I’m NOT an anxious person-- it only seems to be this doc who thinks so so adamantly.
His note repeatedly acknowledges that I’ve had all the “severe” pancreatic responses to all the ERCPs, sphincterotomies, etc., but then states that he thinks I need to stop all the Fentanyl-- the patch, pops, IVs, etc.-- even in the middle of my amylase/lipase being elevated and obviously dealing with CP! He’s not making sense-- or maybe he needs a day or so to go through this kind of pain without any pain meds at all and then maybe he’d reconsider. As much as I’d hate to consider it, after even 12 years, I might not have any other realistic choices than to find another primary care doc.
On top of bad pain and a bad night, this was a bad way to start the day-- But thanks to all of you and your hugs, messages, and posts, I know I’ll get through it and one day over it. You’re all great! Thanks again for all the suggestions and I hope you all get the help needed-- don’t ever hesitate to speak up for yourself.
Thanks for keeping this post going-- I’m definitely giving a copy to this doc when I see him in a few weeks. Hopefully it will help him “get it.” This might be a good suggestion for anyone running into the same thing-- it sure validates that it’s not just you.
Have a wonderful day-- and make the best of it that you can.
Many hugs,
Lisa
Hi Lisa,
I am sorry to hear all that you are going through…I saw that you have been a patient of Kalloo at Hopkins, I too have been a patient of his and I want to send a word of caution as my experience and that of a fellow patient of his ended on a rather difficult note.
I hope that your experiences with him have been positive thus far, as were mine in the beginning. I thought that he was kind and caring and his office, particularly Ruby (not sure if she is still there), were very prompt to respond to any concerns I had at any time.
Several ERCP’s, duct work, and lap chole later, with no relief for either myself or my fellow patient (whom I met in his waiting room, and we were on the same schedule for ERCP’s and such, and became co-patient friends), he changed. He began telling us that we should have no more pain and that he had CURED us of CP…that is the word he used, CURED. When I continued to tell him of my symptoms, he did a few other general tests and then the bomb came, “maybe you should see someone you can talk to”. At that point I was out of there. I have had pancreatitis for a long time and I am perfectly capable of distinguishing pancreatic pain from anything else, as I am sure anyone who has had even one attack can tell you.
I was the lucky one. My co-patient friend did what he recommended…she was seen by a psychologist that Kalloo sent her to, she believed in him and he continued to use that magic word “CURE”…now it has been 7 years and she has been haunted by those clinic notes that say “psychological evaluation”. She has fought for 7 years battling a horrible disease, the folks at disability, and those unforgivable words that send doubt into the mind of every other doctor she has ever seen, despite the physical evidence of what was really going on.
With all that being said, I hope that Dr. Kalloo has learned a great deal more about CP, and his outlook on the disease is different. I am confident that he may very well be a different doctor than he was when we were his patients, but I do feel it is important to share these experiences and prevent any other pain for a CP patient. After all, we have enough belly pain, back pain, nausea, vomitting and heartbreak to deal with.
I hope this is seen as a word of caution and not doctor bashing…what is right for one could be wrong for another. I actually think we should be offered free, no strings attached counseling for the pain and struggles that we deal with, instead of “your crazy in the head” counseling. I hope that you understand the cautionary tail of my Anthony Kalloo experience. Best to you, less pain to all of you, and happier, healthier days ahead. Take care.
The responses to this forum discussion is mind-blowing to me, and I keep feeling both touched personally for the support and external validation, but also so angry that so many of you are running into the same basic problems.
Last night I received a number of teary phone calls from another woman I know who has CP and ended back at Johns Hopkins through the ER. She had been vomiting what looked like coffee grounds and had light and bloody stool. Her pancreatic pain appeared to be in a horrible flair–and although she lives hours from this hospital, she went there because of the specialists and all the treatments she’s gotten there before. She was upset because the nurse and PA who were in charge of her care last night said that because her labs were normal, she should go home because she was just “making it up.” When she did ask for pain medication, which like most of us, doesn’t like to have to take, they wouldn’t give her anything, again accusing her of just making the whole thing up. While I suggested she call her treating docs there–even have them paged (and also offered to do this for her if she couldn’t), we both share the doc who this post was started about. He has apparently been telling her the same things he’s been telling me-- that she needs psychiatric help and needs to stop taking all pain meds/narcotics.
I reassured her that there’s no other way to manage this CP pain except pain meds and resting the pancreas, adjusting diet, etc.-- and that no one should be ignoring what she was telling them, blaming her, or disregarding her pain and vomiting-- She finally was convinced to at least talk with a resident or admitting doctor and ask for her private docs to be paged under the circumstances. At least this doc, when he came, took her more seriously, but only gave her an Rx for ten pain pills and still had her discharged in the state she was in. She was crying most of the time we talked and felt so alone.
This experience she had again reiterates the problems so many of us seem to encounter with CP. I’d really like to consider producing a manual or publication that we can all contribute to to address these issues and others that newbee CP-ers could benefit from. I had started a group for us that links to a private blog meant to offer helpful and encouraging information for all of us- the CarePlace group is under the title “Empowerment Unlimited,” and feel free to join it and offer any suggestions to improve it or the blog.
Thanks again to all-- Keep having better days, and keep believing in yourself and don’t forget to stay in touch with your limits. Get help if you need it, or as I heard it put the other day, “Sea Kelp.” (ha ha), but don’t get forced into believing anything but what you know is true and what your needs legitimately are.
You are all wonderful-- and I think there’s about 80 of us on CarePlace at this point. It’s a large community of the most caring and compassionate people. I so appreciate how we all try to help each other and “be there”–because we are.
Enjoy the long weekend the best you can!!
Many hugs,
Lisa
Hi,
I was just reading your post, and the part about Viokase caught my attention. I take Viokase with every meal. I take three 16’s with each meal, and two with snacks. I have to ake them with meals, because I hae Cystic Fibrosis, and don’t have the ability to totally digest food. I also have chronic pancreatitis, and the Viokase doesn’t stop my pain from the pancreas. Maybe it is different, but they should expand their research, because I know lots of people in the same shape as I am. Daily pancreas pain, abdominal and back, and on Viokase with meals. Just thought I would fill you in on this little tidbit of info.
Karen
I am all too happy to read your e-mail and experince with Dr. Kalloo at JHU. I also had a bad experince with him. If you could please forward my e-mail to Lisa. I was sick for years before being diagnosed by an ER doctor in 1999 with CP. After 2 hospital stays at a local hospital, Carroll County, I decided to see a specialist, Dr. Kalloo (if he can even call himself that!). I saw him in Sept.1999. I had all my medical records from my doctor and the hospital. After we talked for maybe 15 mins (he said he read my records before I got there, I have to doubt that!), he dropped the bombshell. I didn’t even have CP!! I questioned then why were my enzyme levels elevated, he said because I was throwing up. And that my throwing up had NOTHING to do with CP. And this man calls himself a doctor!!! He did more tests, a sonogram and blood work, all came back normal, at that time. That was because I was not having an attack or any problems at that time. He said if I really had CP it would have showed something!! Needless to say I left and never went back and refused to beleive him. I am now happily under a wonderful doctors care and Maryland University, Dr. Eric Goldberg. I can’t say enough good things about the man. I totally agrees that I have CP. Having a doctor believe in you is so important. He takes the time to listen to me. I could go on and on about him but I won’t. I hope you have also found a wonderful doc and are getting relief.
Best of luck to you and Lisa.
Leslie K.
I am all too happy to read your e-mail and experince with Dr. Kalloo at JHU.
I also had a bad experince with him. If you could please forward my e-mail
to Lisa. I was sick for years before being diagnosed by an ER doctor in 1999
with CP. After 2 hospital stays at a local hospital, Carroll County, I
decided to see a specialist, Dr. Kalloo (if he can even call himself that!).
I saw him in Sept.1999. I had all my medical records from my doctor and the
hospital. After we talked for maybe 15 mins (he said he read my records
before I got there, I have to doubt that!), he dropped the bombshell. I
didn’t even have CP!! I questioned then why were my enzyme levels elevated,
he said because I was throwing up. And that my throwing up had NOTHING to do
with CP. And this man calls himself a doctor!!! He did more tests, a
sonogram and blood work, all came back normal, at that time. That was
because I was not having an attack or any problems at that time. He said if
I really had CP it would have showed something!! Needless to say I left and
never went back and refused to beleive him. I am now happily under a
wonderful doctors care and Maryland University, Dr. Eric Goldberg. I can’t
say enough good things about the man. I totally agrees that I have CP.
Having a doctor believe in you is so important. He takes the time to listen
to me. I could go on and on about him but I won’t. I hope you have also
found a wonderful doc and are getting relief.
Best of luck to you and Lisa.
Leslie K.
I just forwarded you an e-mail that I sent to someone else, sorry I didn’t
realize I already contacted you about Dr. Kalloo. Feel free to call me. I’m
at work M-F 6am-4pm. 410-785-4848 ext.121 Leslie Knisley I can’t remember
our toll free number, but I’ll give it to you when you call.
Looking forward to hearing from you!
My husband was misdiagnosed even though the doctor treating him had treated his sister. She had recently been diagnosed with hereditary pancreatitis by another doctor. The doctor basically told us he did not believe in the illness and referred us on. Fortunately, we were referred on to a WONDERFUL doctor who knows so much about this illness.
There are some wonderful doctors out there and it is nice to hear about those doctors so we can be mindful in our attempts to get help. I want to add that we have been very blessed with having great doctors at the University of MN; Dr.Freemen and Dr. Vickers. They are so good and knowledgable. It is so nice when dealing with this terrible illness to have doctors that are so supportive. I can’t imagine dealing with this illness and not have doctors that are supportive.
Lisa and all,
Reading all these post I feel so “normal” around here rather than an anigma! You all “believe” me when I say I am having a flare, mild or big. I also have experienced these doubts from medical professionals. I have had the drug seeker, the “did you really even have an AP attack?”, and even a nurse give me a less priority bed in the ER because I hadn’t vomited yet(did later). I just wonder how many people that really are drug seeking use CP to get drugs??? Probably not many because nobody seems to know that much about it! I wish they would just treat the symptoms so we could have some peace when we feel our worst! Right now I am just plugging away with good and bad days. Nothing too terrible thankfully, but I always feel like a walking time bomb on the verge of an AP flare like we all do, i guess. Well I think of you all often.
Lisa- I am so sorry your doc is screwwing with your care. I can’t imagine why he would have done such a thing. I hope you are hanging in there.
Praying for you all happy pain free blessings!
Keri
Cager- I am so sorry for your experience. Unfortunately it is FAR too common. It just boggles my mind how crap like this can happen. I have almost lost my faith in the medical profession due to this kind of stuff.
My current GP has also declared me “cured”. He has decided that since I am fat, I am now cured. I suspect he weight is some sort of reaction to my pain meds since the weight suddenly packed on right after all my pains were increased. He doesn’t believe I can’t work which doesn’t help when I need forms filled out. Luckily I can go to my pain spec who is wonderful. I wish he could handle all my care. I have also had many docs who denied me care or tried to. The crap they come up with is so pitiful it would be hilarious if weren’t so serious.
I live in fear for the day my condition gets worse. I know it is almost inevitable that someday my pancreas will burn out causing all sorts of problems. I live in fear of it turning into pancreatic cancer since I know having CP raises our odds dramatically.
It is so sad and frustrating that docs are no longer allowed to just do their job and practice medicine. It seems all but a few have lost any amount of compassion they might have had and forgotten the purpose of helping treat sick people. If you have ever watched mystery diagnosis, you realize how wide spread this problem really is. I don’t know what the answer is to this problem. I just know that I no longer believe we have the best health care in the world. Not when people are treated this way. I’m glad we have each other.
Hi I’m new (as in 5 minutes ago) to the group. I have pancreatic enzyme deficiency (cause unknown). I’ve been on Creon 20 (900 capsules ev 30 days) for 15 years. I’m so glad to find this group. I recently began scrambling to try to find some financial assistance to pay for my medication. Solvay can’t help because on I have Medicare Part D. I’m in what’s called the donut hole so $4,000 is what I need to pay right now to get my medication. Yes, I’m on disability for something unrelated. I’ve never met another person with my condition so I’m thrilled to find this chat area. yeahhhhh Are there any others out there like me???
DallasGirl
Hi everyone…in my research on CP there are four things that the medical field says to do about CP (it’s always the same four things, no matter what research) 1) no alcohol, 2) low fat diet (heart healthy), 3) enzymes, and 4) TREAT THE PAIN!!!..it just amazes me that the medical profession (most of them) have a problem with TREATING THE PAIN!!! Emergency rooms, without CP patients records, DO have a problem with the pain thing, because there are a lot of “Drug seekers” out there that try to use the ER to get what they want. You really cant blame them, as most MD’s in their own practices, get the same thing…people trying to get drugs from them. It is sad, even when a chronic pain condition is well documtented, that Dr’s still under medicate chronic pain patients, because of all the fears of the DEA and being used by people. My Doctor (She) doesnt have a problem prescribing Narcotics to me because it is well documented. As an example, 95% of people with lower back pain dont have a CT scan or MRI that show anything wrong (In this case, I am lucky because my numerous CT scans/MRI’s for my lower back problem show my defects…but I know not to just show up at the ER with pain because the ER dont have my records and all the Flags are raised).
I have two (CP and herniated discs) well documtented chronic pain problems…but I know better that to just expect a DR to write me a precription (unfortuntately from learning the hard way…being accused of being a “drug seeker” or addict… from DR’s that dont know me).
Also, there is not just one test to diagnose CP…it is an impression from numerous tests. My blood work has always been normal, so a DR cant tell just from Blood work.
Best regards, Eric
I realize this is an older thread, but I just came across it. It is both good and bad to know that others have been treated the same way I have. While making me feel a little less isolated, it is terrible that any of us have to endure this. After being diagnosed initially in February of this year, I went in search of a new primary care dr. and found one at an internal medicine clinic, thinking this would be a better person to help me with my day to day needs and I had not yet been to a GI. My attacks have continued for 9 months now, hard and heavy. I have had tons of procedures, had my gallbladder out and changed my diet to vegan. They finally put me on enzymes last week. In my most recent visit with my primary the first of this month, he first gave me a hard time about having been to the ER several times (some of which I was admitted). He then went on to ask me if I had any “psychological problems” (I don’t) and told me that he didn’t think my pancreas was the problem “anymore”. Since when? Since it has been a few weeks since my lipase spiked? It was ridiculous. He feels that my GB removal in June should have fixed everything. After saying several extremely offensive things, he admitted that this was not his area of expertise and I should be deferring to my GI drs. I was very upset and left there in tears. I had already decided that I was not going back there, but am in the process of looking for a new dr. I got a certified letter from him the other day saying he can no longer provide my case because we “don’t agree”. Well, that’s for darn sure! I have an appt. scheduled but in the meantime I sure hope he doesn’t give me any trouble about rx refills, etc. This is so frustrating, as many others have said when the drs. have medical evidence staring them in the face but they can’t figure out why or fix it then they feel the need to give you a hard time instead of just admitting they don’t have an answer. Best of luck to everyone in finding decent care out there!