It's my doctor who's crazy!

Pancreatitis
#1

For the past few months- which included more hospital stays, ERCPs, studies, and bad episodes of CP, my primary care doc, who now admits he’s “over his head” for some unknown reason decided to take over all my care and stopped consulting with the GI folks and pain management. In thinking he could do it all, he stopped almost all my regular meds, including all my asthma meds, which has contributed to many recent breathing problems and threw off asthma that was well-controlled for almost a decade.

Then, while my labs were going up and I was in more and more pain w/my pancreatitis, he decided that since the pain meds ‘could’ be contributing to some of the GI pain in something he read, he made the horrible decision to cut out nearly everything-- from a PCA pump that was at high continuous and demand doses (and had been for the past year), a Fentanyl patch that was up to 275mcg, etc.-- and then one day, he wrote orders to abruptly stop the PCA and the patch went down to 150mcg-- all in less than 48 hours.

I went into acute and severe opiate withdrawal and was in even more pain, my body was shaking and jerking so badly that it took several nurses to help hold my arm still enough to even get a BP reading, and I can’t even tell you what went through my mind. He ordered all this–and then left on a trip. (It lasted for days and then in a milder for even after I discharged myself from the hospital and got readmitted to a hospital that I knew would take good care of me.) All the docs and nurses kept apologizing and saying that they would never do this to anyone-- that it’s cruel and unnecessary and that they would never drop down the dose that fast or without better medical support. It wasn’t only unnecessary, but incredibly horrible. I can’t believe he put me through that-- he hadn’t been making good decisions for the past few months, and this was like the final straw.

I’m a tough, determined and strong person who is grounded and confident, despite all the CP complications, chronic terrible pain, etc.-- and now he’s suggested that maybe something about the CP has to do with getting a “secondary gain” subconsciously from it. It made me so mad-- since I’ve been doing everything possible to get on with life, get well, and stay positive through all of this. I don’t understand doctors who insist that, despite concrete medical findings that show the pancreatitis and all the blocked ducts, etc.-- that something still must be wrong psychiatrically (when there just isn’t). I worked as a clinical social worker for about a decade and suggested to him that he needs to be open to the fact that not every patient who ends up diagnosed with several things, or doesn’t get better (like ducts re-obstructing and pressures going off-- stuff that I couldn’t possibly control)-- has a problem. Like many of you running into issues in ERs and docs thinking you’re drug-seeking when you need pain meds-- I think sometimes it’s the doctor’s helplessness that leads to these bad accusations or assumptions.

What do you do when the doc you’ve trusted for many, many years suddenly doesn’t want to accept or believe that there’s nothing wrong with your head–just your pancreas? Frustrating! I think sometimes dealing with this part is harder than dealing with the disease itself- not that much is worse than the CP.

Thanks for reading!!

Lisa

#2

They tell us guys the same thing too. So I think it not only a sexist thing.

#3

Lisa, before I even got to the end of your “crazy doctor” story, I KNEW you were a woman. If you were a man, I can almost guarantee you, no one would dare say it’s all in your head…just speaking from experience, here.

Lots of luck to you,
Genieanne - a.k.a. Celeste

#4

I’m getting really tired of the arrogance of some doctors. This is our LIVES that they are messing with. I think that sometimes they just don’t get it…it’s really all about work…hard to just talk for 5 minutes, write a scrip and bill people like us. We require real research, and most doctors, well they just aren’t into that.

I think it’s criminal what was done to you!!! I think that it’s outrageous! We have enough troubles trying to find a way to help ourselves want to stay alive, and then this crap??? I’m so there with you. I know how you feel. I’ve been to no less than 5 doctors for this problem since Feb. None of which were interested in ANYTHING except billing my insurance for $200 bucks for their 20 minutes of time. Disgusting.

#5

Thank you guys so much for reading my post and writing back-- This was hard to put out there for some reason, and I greatly appreciate the feedback. I know too many people who are running into this stuff. I respect that docs are human, but they need to recognize their limits and “do no harm.” I’ve talked with several people who were told it was in their head so much that they eventually started believing it. I won’t let that happen, but it still affects me and I get drained by feeling like I have to defend what’s going on with my body.

Thanks again and hugs to all!

Lisa

#6

I’ve been reading but not responding because I’ve been thinking I’m in better shape than many of you. It took 21 years for me to get a diagnosis (CP) and that was at Hopkins. My doctors here (PIttsburgh) are still dubious. I even went to a “shrink” when it was suggested thinking that he might at least help me to cope. He never put me down, agreed that the pain was real and did try to help but, obviously, that wasn’t enough. My pancreas “expert” refused to see me in the ER a few weeks ago because I was not having a pancreatitis attack! It’s true that I had an espohagus is sever spasm and hadn’t been able to swallow anything for 5 days. My primary MD was away and I didn’t know where else to turn. I finally found another gastro. who did an endoscopy and dilation to get me through that. Rest assured I will never see the first man again even if it means going back to Hopkins.

At least my primary MD is willing to give me whatever pain meds I need – I resist taking them whenever possible as I hate not being able to function, but whenI need them they are there. He will agree that I have had acute attacks – he just doubts the “chronic” part. I usually can manage to keep thing under control with a very low fat diet and vegetarian enzymes. I’m allergic to the others. When things get bad I go immediately to clear liquids and pain meds and have managed to stay out of the hospital for quite awhile. I hate to hear how so many of you are suffering. May you all find knowledgable MDs and relief soon.

BFR

#7

Lisa, I am so sorry to hear about your unnecessary suffering. We suffer enough as it is. After reading the stories, I can’t believe how fortunate I was with my gi! He zeroes in on the pancreas almost immediately. They did an upper gi which showed some GERD effects, but nothing else. Then I had a double contrast CAT scan of the pancreas- again nothing. The next test was the EUS and that was when the pancreatitis was found. I guess that I just really lucked out with him. Other than having trouble understanding his English, he seems to really know his stuff. He even told me upfront after I was diagnosed, that even pancreatic experts don’t know all the ins and out of the disease.

As for the pain meds, yes, that is like trying to pull teeth at times. I do understand though because there are two forces that affect the doctors’ reticence to prescribe the medicines that can actually give us relief. The first is that there are individuals out there who are true “drug seekers”. They work the system from going to multiple doctors to going to multiple pharmacies. There isn’t much we can do about that. The second, more important and in some ways more insidious force, is our federal government in the form of the DEA. The DEA keeps records of all Schedule II drugs (fentanyl, Oxycodone, Oxycontin, morphine, etc…) that are prescribed. They second-guess the doctor and if something looks “suspicious”, they will actually review the case history of the patient and determine if the doctor is being too lenient in his prescribing. Depending on their “assesment” of the situation (with the emphasis on the first three letters), they then punish the doctor by either fines, revoking his DEA number (severely curtailing his ability to prescribe any but the most innocuous medicines), or even imprisonment. Our option here is to contact our members of Congress and petition them to change the laws or at least to rein in the overzealous DEA. Hoping that everyone is having as pain-free a day as possible!

Warren

#8

I was so there what you went through. When I ended up in the ER after I had the minor surgery for getting a J-tube my pain got worse and went to ER. I told the doctor that pain medication which were started that time are making me anxious. Then he said immediately, maybe it’s the anxiety that is making the pain worse and you should see the psychiatrist. I was shocked and before I could say anything he left. I got so mad they got me admitted in the hospital but they asked the psychiatrist to come and see me. She talked about an hour and prescribed some medicines. When I came home and I tried them first time, I woke up in the middle of the night and without even noticing anything (I was hooked to the nutrition bag I.V. pole) I walked past everything and my husband woke up to the noise and caught me before my J-tube was pulled out from my intestines. He had to hold me tight and tried to wake me up and it took a long time for me to wake up. My husband couldn’t sleep worried it’s going to happen again.
We called the psychiatrist and she said, the medicine didn’t set with you I’ll post you another medicine. I was so frustrated and didn’t want to try anything. But how am I going to prove that I’m not crazy and there is nothing wrong with my head. It’s the pain medication that’s making me anxious, what’s wrong to accept the fact. I think the doctors were trained that as long as they are treating a person they can assume whatever they want about the patient and put through
them to any kind of treatment they can. Many doctors treat patients as ‘bodies which need treatment’ than human beings who got sick. I observed this in the big hospitals. They come with so many interns and don’t even ask whether we mind that they talk about or teach the students about the problem we are going through. They just carry on showing where it hurts to the patient and ask the interns to go ahead and press the place whether it is tender or not.

After trying few medications and each my body reacted badly to each psychiatric medication and then the psychiatrist in one of our session said, I’m scared to try any more medications. I think if you are getting anxious with the pain medication I think you need just Ativan to control the anxiety. So, that’s what I’m on because some patients react to the medications differently than the other patients. Why is it hard for the doctors to accept this fact, I don’t understand? I rather like to talk to a Psychologist who would listen and give suggestions than put medications in my body, as if I’m not taking enough medications. A patient suffering with Chronic Pancreatitis continuously for so many years, getting frustrated, depressed are normal feelings for anybody in that situation. It depends on the psychologists too. Luckily I found a good one who treat people suffering with different diseases as human beings and it is normal for human beings to get sick and it is not their fault that they got sick or something wrong with their minds.
Whenever I get upset or frustrated my therapist says, yes if I was sick for that long I would feel the same way. These are all natural feelings and there is nothing wrong with it. My doctor got upset that I’m seeing psychologist than psychiatrist and said, psychiatrists are more equipped than the psychologists. If one method doesn’t work they can try another thing like bio-feedbafk. I didn’ care because after that horrible experience I wasn’t going to try any psychiatric medications unless I really go crazy.

Last week I went to my physician as I was feeling burning in the urination and feeling very tired. She checked the urinal sample and said I have the UTI and put me on antibiotic. Then she said let’s get a CT Scan because I want to make sure that the infection didn’t spread to somewhere. As I was allergic to I.V dye she gave some medication to start taking before 13hrs of the test so that I won’t get any allergic reaction. The medicine she put me was Pretnazone, the Steroid, 50 mg 3 times and Benadryl one hour before. She knows that I’m very sensitive to medication and I was worried to take the steroid because I was on so much pain medication so I said, I’m scared to take it. My husband still totally believes the doctors and said, you have to take to avoid the allergic reaction.
I took the first dose at 5.30am and within one hour I became totally disoriented, confused and lost the sense where I was and what I was doing. I was on the sofa and my husband tried to talk to me and he thought I was very sleepy and told to take medication again 11.30 and left to office. He is very patient and does more than I expect from him. But he doesn’t have any experience with the medications and the pain. He feels helpless and worries a lot for not able to take away the pain from me.
He came during the lunch time and tried to wake me up to ask why I didn’t take the second dose. Then he realized that something is wrong with me. I got up and sat in the sofa, he turned the T.V. on and I didn’t know what was happening on the T.V. I asked him who are they and what are they doing. He said, that’s your favorite movie don’t you remember? Then little bit later I saw my son sitting near computer and called him then he said, he is at school. I saw my daughter running through the house and called her and he said, she is at school too. I think he started worrying then. He held my hands and said, just watch the T.V. for a while. I was in that condition totally disoriented until my kids came. I was able to get up, go to bathroom but I felt bitterness in my mouth and numbness in my hands and legs. My mind was almost blank.

In the evening when I came totally to my senses I realized what happened and was so scared and worried that I was alone in that condition and what could’ve happened if I walked out of the house and had an accident or went to bathroom and fell there couldn’t get up until evening lying on the floor like that and got hurt.
I got so mad at the doctor and also at my husband for leaving me like that and not believing me when I said I’m scared to take that medication. I was out of my mind most of the time until two days. Imagine if I had taken all the doses! I don’t want to even think about it.

At times like this I feel like I’m a guinea pig and they are experimenting with my body. When I told the on call doctor he said, the medicine never does like that, I don’t understand why it happened and I never saw patients having this kind of reaction. So what if the medicine works for some patients it doesn’t mean that it should work for me too.
My physician always says, you are a challenging patient and you are challenging me I don’t know what to do with you? Don’t you know that patients will be of different kinds of people and they have different kind of reactions to medications? So you can’t treat a challenging patient? I haven’t spoken to her yet. I’m thinking of changing physician. But who knows that’s going to be a perfect doctor.
This is what I wrote in my journal two days ago. If you guys get a chance read it. I’m still new to the site and don’t understand how everything works like how to open the new journal.

So, you are not alone who go through this kind of thing. I remember reading the writer of Seabiscuit,Laura Hillenbrand, had the same experience who was suffering from fibromylgia, for which there is no treatment. The doctors kept saying that there is something wrong with her mind. My friend brought the article which was published in a magazine and showed to me. My friend wanted me to get the message that there are other people who are suffering and are not giving up. That’s when I told her what I went through with my doctors.

I had so many experiences with the doctors, medicines, nurses etc. I have seen wonderful doctors who treat me with kindness and understnd what I am going through. The nurses are angels where I go frequently and I call that as my second home. But I had bad experiences with some nurses who didn’t care when I was getting a severe attack and refused to call the doctor to give me pain medication to control the attack. I had to complain about the nurse and she is not allowed in my room any more. I have lot of experiences like this. Some people keep telling me to write a book about all these experiences. I’m just trying to do things which I like but I don’t know whether I’m ready to write a book or not.

I learned to fight back if the doctors pass any comments like I’m not trying properly to eat when I tell them that I have to eat fruits without skin, I just tell them how I try and maybe my stomach became very sensitive after going through all the procedures. I don’t take it when a nurse tells me that I shouldn’t be on those kind of medications because they are addictive, I tell them that my pain clinic doctors told me that I have to take those medications if I want to have life with my family and to keep the pain under control. I’m not taking any medications as recreational drugs and to get high.
You have to learn to defend yourself and get the information from different sites and go to library and do research so that you understand totally what’s happening to you and then only you should be able to cope up with these doctors who are trained in the old ways. There are some university hospitals which are training doctors recently to treat a patient as human being and with compassion. We have to keep fighting and defend ourselves until the system changes.

Hope you all have pain free night and lot of love and hugs from me to all of you.
Durga.

#9

Hi everyone. I read everyone’s posts everyday. Isnt it comforting to know we are not alone? I find strength and encouragement, because I can relate, in reading all of your shared experiences, the good, the bad, the painful, the frustrating. I want to share with you that I am a 47 yo male…and I have been seeing my primary care physician for 26 years. SHE is tough and conservative, yet, as all MD’s are taught…they have to believe their patients. She believes me when I describe my symptoms and pain. She and I can argue…my treatment, my pain meds or topics such as the problems the medical field has with such a tough disease as CP. She openly admits that I (WE) know more about CP or the pancreas than most Doctors.

It is shameful how people who live in chronic pain, who need (dependent, not addicted) and can have their quality of life improved with pain meds, are treated by the medical profession, by the media, by government agencies, even from friends and family members who do not have chronic pain. I wish there was a simple test to measure pain…but there is not. I wish there was a machine to put Doctors and DEA agents in (anyone who doesnt understand or doubts what pain is), to duplicate the pain we have to deal with…I was going to say for only 5 minutes but that doesnt seem fair…I am not a masochist…just my frustration for all of us spilling out a little.

This community needs a Glossary/Dictionary of Acronyms/Terms. It might be helpful for people just learning about CP and even me, who doesnt know everything. Later, Eric

#10

You’d think it would make me feel better to hear that other people have had some of the same experiences as me, but it doesn’t. It just makes me sad and angry. I feel so helpless. It is such a helpless feeling to be at the mercy of a doctor who is a jerk. You know he holds all the strings. I’d like to tell a piece of “my story” if I could.

It was almost a year ago. I had finally gotten to UCSF, which is supposed to have a really good Gastro dept. The consult seemed to go ok. They convinced me to let them do an ercp, even though I knew there was nothing malformed. ( I had had 2 before). I told them my biggest fear was the horrible pain I am let with after an ercp that lasts for weeks. (UCD did nothing for my flare, just sent me home and said it wasn’t their problem) They assured me I would be taken care of, the doc said he was going to try and find jusification for removal of my gall bladder.
After the ercp I was in a horrible flare, just as I knew I would be. I was in for about a week. Then one day they came in and said “you need to leave, we need your room”. I said I would call my mom to get me when she got off work but they said they needed me to leave now, within the hour. Now mind you, I live in Vacaville which is about a 2 hour drive north. I was completely messed up on pain drugs, antinausea and ativan. The nurse gave me meds, pulled my iv and pointed to the door. So there I was on the streets of SF with my overnight bag, blanket and purse. Luckily I had some money on me. It is a miracle I made it home. I was in no condition to be wandering the streets alone.

Then when my pain and sickness continued, my mom called the doc’s office and demanded an appt. We drove the 2 hrs to get there, were put in an exam room for 2 hours to wait. I was carsick and threw up several times while waiting. Then the doc comes in with an intern or something. He starts telling me I need therapy and a pain spec. (my pain spec had quit to start her own practice a few weeks previously. I was in the process of being switched to someone else in the group) Yes, I realize it is important to talk to someone regarding all the emotional and mental strain of being sick, but I was there to discuss my pancreatitis. He had his buddy guard the door like I was going to attack and just kept telling me over and over I needed therapy to deal with my issues. I believe he kept me waiting so that all his staff and everyone else were gone. It was clear to me he thought I was some sort of head case. It was also clear he wanted me out of his office, never to return. I could see that whatever I said he would twist it to suit his “theory”. I was so angry I could hardly contain myself. I went through all that agony and waiting for nothing. The ercp was for nothing. It took me over a month to recover from an ercp that was for nothing.

I’ve considered writing him a letter. Maybe as much for me as for him. He is unlikely to change his views. But I need to feel as though I have stood up for myself.

I am sooo sorry this was so long. I know it is hard to read such a long post. But I really needed to tell it to someone who would understand. When you are sick you are so vulnerable. This guy really hurt me emotionally and psychologically.

#12

Lisa -
Excuse me while I push my jaw up! My heart goes out to you and my finger goes up to your PCP. Take some of these experiences from others as well as yours and find another doctor. Challenge them to sit down and read these experiences, not made-up stories we HOPE to be able to tell our grandchildren. I have also had a ANP - don’t know what the “A” stands for except in my mind - give me problems with refilling my Hydrocodone. I no longer see her. I have a script for Lorazapam for my anxiety and never have to refill that on time. If I wanted to “get a buzz” I could take a few of them. I’m not a pill-popper either. I am a “never-touching-another-drop” recovered - yes recovered - alcoholic. What really sucks (please excuse my language but under the circumstances…) is when the docs do this to us on the weekends or go on vacation, whatever that is.
When I first started having pain I went to an Emergicare facility 3 times. Each time they did give me pain meds but wrote on their chart that I was anorexic. Luckily the last doc did suspect Pancreatits and told me to get a PCP. Being told I was anorexic was a big slap in the face. My normal weight is 120 and am down to 93. I wish I could eat like I want to so I could gain weight. I live in AZ and have yet to wear shorts outside the house, let alone be seen in a bathing suit.
If I had the time I’d start a petition or something to send to someone that could make a difference as far as our pain meds go and getting someone to find a cure. Don’t know if I’d know where to begin. I have a week off from school coming up and I’ll try and get something together then. No promises to anyone but something needs to be done. Wish we had a celebrity behind us then maybe we would be heard. The one thing this disease has taught me is that I have to stand up for myself and talk till someone listens, including myself. No one knows our bodies better than we do. We’re not crazy just desperate for some answers.
I could write more but need to take all this energy and put it into my report that’s due Wed night. If anyone didn’t read my forum discussion about this report, please do. Thank you to all that did respond. Still working on the outline but have tons of material to squeeze into 10 min. At least I’ll get to inform a few people that probably don’t even know what a pancreas is. Wish me luck. I pray for all of us at least once a day.
Major hugs to all!!!

#13

Hi, all…

Again, you’ve all been so awesome in responding to this. I’m feeling very validated, and although I’m sure enough of myself and who I am and what I’m going through that I wouldn’t dare let that doc mess me up. That being said, it’s both very saddening and comforting that so many of you have experienced similar things. I’m working hard on what can be done to start to change all that in the medical profession.

A couple of experiences I’ve had that might also help some of you who wrote back-- Steroids can lead to “steroid psychosis,” which is a known side-effect of some steroids in some people-- you’re definitely not crazy if you go through this. Just know that it’s the meds-- and you can get through it. Also, many anti-emetics (anti-nausea meds) can lead to dyskinesia (your body might jerk or shake and you might feel agitated and out of control) as well as akathesia (a feeling like you can’t be still and even a need to run). Once you know that the meds are causing this, it can really help to deal with it. Benzodiazapines like the Ativan many of you mentioned can reduce these side-effects, too.

I sent each of you a personal hug as a “thanks.” I’m still having some really bad days and concerning elevations in liver labs, etc.-- and will hopefully get it all settled back down soon and I’ll be able to write back more to you.

Thanks again so much-- I’ll likely print this Forum and bring it to the “crazy” doc as a way to re-initiate the discussion and see if I can feel secure continuing to see him or not.

Take care, all-- and my thoughts are with you for as many pain-free moments as possible. Hang in there-- and don’t let anyone tell you it’s in your head when you know it’s in your body (pancreas, etc.).

Many hugs,

Lisa

#14

I want to let you know i can relate… in was i so many pain meds from Aug. to Jan. (CP,gallbladder, 3 ERCP’s, Sint etc…) I was definitely taking too much;but the doc’s just kept sending me home and take this; i was miserable…In January a doc confronted me on the dependency and i realized this was crazy and did not know what pain was what. Well i detoxed myself (horrible) and said i would never let this happen again. Well i felt OK for (moderate pain) a couple of months. the past 2 months have sucked again, pain all over (my back kills), i have been in the ER 2 x’s; cyst on ovary, Kidneys and dehydration…again i had to take pain meds to get through the days (work, children, life etc…) I am so depressed. I am a recovering alcoholic w/ 4yrs and every time i take pain meds i feel like a relapsed. then when i do not have them the pain is so depressing I so bad want my life back before this disease has taken over. I am so sick of doctors I am also one who has blood work that comes back normal and i have also been told i have an eating disorder. i am so exhausted… i can not stand putting my children, husband and mother through this any more. ANY ADVISE

Lisa

#15

Hey there! I just posted a note on another area of this site–not sure where it is! I was asking if anyone has tried Sandostatin/Octreotide injections for pain. My doctor at the University of Florida’s hospital, Shands, recommended I start injections in my stomach while I was still here in Tallahassee at the hospital. It took a week before it went into effect but it was amazing when the pain stopped! I was able to give myself the injections when I got home–had to fight my insurance company to pay for it but finally was able to convince them with the help of a good friend who works for a physician group–she wasn’t going to take no for an answer–so good to have an advocate like that when you are so weak and sick!

Sandostatin/Octreotide is a growth hormone but they discovered in their studies at Shand’s that it stops the pain of pancreatitis.

They have also discovered that Viokase stops the back pain if you still have it when you are taking Creon. They are doing a study right now for a one pill a day Viokase.

I hate to hear the problems you all are having with your doctors–I had one of my doctor’s partners (when my dr. was out of town) tell me that I wasn’t sick and didn’t need to be in the hospital. After my next CT, he came and apologized to me and said he’d never seen such a bad CT–that’s when they realized I had the large pseudocyst.

My doctor here in Tallahassee is wonderful–usually gives me a hug when I see him–he’s so thrilled I lived! He introduced me to his wife one of my visits and she said, “You don’t know how he worried about you. He’d come home from the hospital and do research trying to decide what was best to get you well.” The same goes for my doctors at Shand’s–always testing, studying–trying to do what is best for me.

Wanted to ask also–has anyone been on the Atkins diet? I was on that and under extreme stress–they seem to think at Shands that that may be what triggered my initial attack. Just met a woman last week who is a nutritionist and was told she had pancreatitis–she had been on the Atkins diet and under extreme stress.

You all take care. You are in my prayers.

#16

The Atkins Diet is dangerous as it can lead to ketosis which most clinicians view as a form of starvation. The preferred energy source for cells is glucose which comes from carbohydrates such as starches and sugars. During ketosis the liver starts to convert fatty acids for most of the body’s energy sources. In addition to ketosis, high protein diets tend to put a higher load on your kidneys in the form of larger amounts of nitrogenous wastes (read urea).

#17

I’m curious, do you remember the docs name at Hopkins that you saw? I saw
Dr. Kalloo, supposed to be a specialist in CP. I do have CP, but he told me
I didn’t. So I went to the University of MD and see a wonderful DR. Eric
Goldberg. I couldn’t ask for a better doc.

#18

Lisa,
I think you should ask your doctor about a low dose fentanyl patch. I HATE pain pills, shots, etc. They leave you feeling horrible, and your stomach gets crappy, you are wiped out, and then hung over. A patch has hardly any potential for abuse because it continuously goes through your skin, is even, and lasts for 3 days. You may feel a little tired at first, but your body will acclimate to it. I just recently was put on the patch, and it has been great! It keeps my pain at bay or at very tolerable levels, and I don’t get sick at my tummy (well, more than the usual nausea that is always there with me). If you are concerned, ask to try the really low dose. I’m on the 25mcg patch, and I don’t feel drugged. Give yourself a break. I greatly respect your sobriety, and I know it’s a tougher issue when you have these issues, but you know when you are being honest with yourself. Trust yourself, and KNOW you are only doing what you have to, in order to take care of yourself and your family. You won’t need to apologize here. We have to stay positive, because it will ultimately keep you the fighter you already are. Hope that helps a little.

#19

It is quite powerful reading all of these entries re. challenges with doctors. During my last hospitalization I realized that some doctors really don’t have a clue about pancreatitis. I had a doctor from my internist’s office who insisted I take pain meds orally even though I was having a documented pancreatitis episode. The GI was new and in our hospital the internist “rules” and I felt totally powerless. My husband and I explained that I should be taking nothing by mouth but we were ignored. The unfortunate thing is that when we are hospitalized and on pain meds we cannot advocate for ourselves very well. I think it is imperative that each one of us has some person ( friend, family member or spouse) who can speak for us when we are in pain and/or hospitalized. I am so glad that we have a site where we can share info and experiences. Sprout

#20

It was Dr. Kalloo whom I saw and it was he that made the CP diagnosis.

#21

Hi, again…

I had to write back to those of you who replied recently:

Lisastorm (AKA Lisa, too)-- The docs often don’t know what they’re doing with pain meds and accusations. Someone else wrote that they often feel blamed by the docs for just being themselves and going through this disease. I think that person nailed it-- it’s sadly too common. I know you’re having a tough time, but remember to take that “one day at a time,” and be proud of what you’ve accomplished so far-- with your CP, your sobriety, and please don’t ever think that taking needed pain meds for CP is a form of failure with your sobriety. It’s not the same thing, although I do understand why you’d feel that way-- Stay strong and be proud, and continue to hang in there. You have a lot of responsibilities in addition to getting well. Feeling depressed is normal with all this-- but it’s not the end… and might just be part of a great new beginning. Let me know anytime you want to talk-- Hugs!!! Lisa

SAH-- Thanks for the info, even in this forum, on the Sandostatin-- I’m looking into it because I seem to be allergic to all narcotics other than Fentanyl (see the other Forum Post I initiated on this) and this med looks like a longer-acting opiate that might be helpful in my pain management. I’ll be talking w/my doc about it soon-- and I’m so glad you’ve had some good results with it. I haven’t gone back on the Creon, but will also mention the Viokase if I get there. Sorry to hear you’ve also had the docs doubt you. It’s so insulting and energy-draining. I also feel, like your experience, that even if a doc misjudges you and blames you in some way or doubts your sincerity or your medical diagnoses, if they are a big enough person to be able to own up to it in the face of medical tests and documentation that refutes their incorrect assumptions-- they deserve another chance-- as well as the credit for being able to own when they’ve been wrong. For me, it’s the ones who can’t own the errors and say they’re sorry that lose my business. It’s a problem I’ve been having with docs since a rare condition I wasn’t properly diagnosed with and have had docs assuming incorrectly about me since I was a toddler. It’s an area I admit I’m very sensitive about, but I also think rightfully so. Anyone dealing with chronic illness at least deserves to be believed and trusted that they know their body-- and not frequently doubted about their integrity or accuracy in reporting what’s wrong or what they need.

Warbi-- Great info-- I know this helps many. Thanks!

Bimmerella-- (See my other Forum topic of Fentanyl doses)-- I had started on the 25mcg patch over a decade ago and it was a lifesaver (not for CP back then) but it’s been as high as 275mcg this year in addition to frequent use of the Fentanyl “lollipops.” They’ve been a lifesaver for breakthrough pain (actually a lollipop, not a Lifesaver:)) especially once I became allergic to all other known narcotics. I just hate that they don’t last for more than a few hours at best. I’ve never been a drinker and have never been drunk, so the CP was a real (bad) surprise-- and since I was already “disabled” and using a wheelchair, it’s turned my life upside down. I had already re-defined myself by a lot of high level wheelchair sports-- but spending years laying in hospitals and hooked up at home, I’ve missed all that terribly. I’m still hoping and planning that there WILL be a day I’ll get it back, but realize it will be different than it was. If I can share with you also, check out my website at www.lisabard.com-- it will tell a lot about who I really am (CP aside) and I started a blog at the end that is for all of us on this site. Thanks again! Lisa

Sprout-- Guess you’re realizing from the numbers on this post that way, way too many of us run into problems with docs… from PCPs to ER docs to the GI specialists. I understand that it’s a very hard disease to treat and cure, especially once it becomes chronic. This site has been amazing support for so many of us-- everyone is so willing to help each other-- or to just be “friends” or send “hugs” when you’re not even up to writing much. Everyone here understands what often the docs can’t or don’t and you don’t have to defend it here or explain how bad the pain is-- people with CP all just get it. Glad you’re on the site! Hugs, Lisa

Ponigirl-- Dr. Anthony Kalloo at Hopkins has done all of my ERCPs-- and it’s been a bunch, but I almost never get to see/consult with him except on the operating table. I understand that he’s one of the best, and given my rare condition of “Ehlers-Danlos Classical Type” he was the only one to go to. That being said, it seems all of the ERCPs just led to worse pancreatic flares and nothing has really worked long-term. He’s done several sphincterotomies of both the biliary and pancreatic ducts, used Botox, used balloons, and tried a stent early on, but it just occluded and became emergent to remove. It’s been a bad go at Hopkins, to be honest. I was injured by two interns who apparently violated their own protocol, and the last admission there in early April led to this whole mess w/my PCP/internist “getting in over his head.” It seemed like he just hadn’t been thinking clearly or making his usual level of good judgments for a few months. Not sure what it was all about, and I’m still trying to talk it out with him. I need to feel safe if someone’s treating me. While I understand that all docs are human and can make errors-- as long as the errors aren’t too damaging… or like I said before, the doc can own the mistake and apologize, I think it can still be okay in most cases. I might look into the doc you mentioned since I’m close to there-- If you might be able to pass on any contact info for Dr. Goldberg I’d sure appreciate it. I won’t go back to Hopkins hospital at this point, although I do have specialists up there I would still see. Thanks for all the info-- It might be a great new start. Lisa

Bfrogal–Again, Dr. Kalloo is touted as being one of the best. The Botox ERCP was something he said that only he and another doc in Germany were doing. It’s still experimental, but could help hold ducts open without any real complications. It was my easiest of many ERCPs.

You’re all SO awesome for continuing this post. It’s such a pervasive problem. Does anyone have suggestions that we, as the CP patients, could do to help change this? If anyone’s had great success in addressing it with a doc they really wanted to keep, let me know, too, please.

Many hugs and pain-free time to all!

Lisa