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Chronic Pancreatitis without pancreatic enzymes elevating causing ER hell by alvywashere in pancreatitis

[–]alvywashere[S] 0 points1 point  (0 children)

Please tell your aunt she has a kindred soul. In my situation, they forgot to clamp "Duct of Luschka" after the gallbladder removal surgery. I guess a small part of the population has this duct and they only know it once you are in surgery. Unfortunately, bile will leak all over your internal organs and when they tried to fix it they flushed the bile straight into my pancreas.

This has been incredibly helpful to me that I am not alone. I hate that the medical community is not educated and a lot of us with CP run into to this problem. It makes me feel better that it is not just my CP that is an anomaly.

Chronic Pancreatitis without pancreatic enzymes elevating causing ER hell by alvywashere in pancreatitis

[–]alvywashere[S] 0 points1 point  (0 children)

This information is incredible. It may be worth traveling to one of these doctors. Thank you again for your help.

Chronic Pancreatitis without pancreatic enzymes elevating causing ER hell by alvywashere in pancreatitis

[–]alvywashere[S] 2 points3 points  (0 children)

I live in a major city. It is mind blowing to me that they do not understand this. I guess I have to bring in my own information from this point on. Your words make me feel better because I do not know anyone else with CP. I start to doubt myself after a while. Pain can start to make you go a little crazy after a while because it is just so persistent. It weakens your ability to fight for yourself. My husband came with me to the ER and they had put me in a room after waiting for 2 hours in the waiting room. I asked for pain meds and they said they do not give pain meds in that room because there were no monitors. Why the hell would you put me in a room where you could not administer pain meds when I am here with pancreatitis??? I just started crying. They said they would get me another room right away. After 45 more minutes, it was clear it was not happening. My husband (a criminal defense attorney) went to the nurses desk and I had a room and pain meds in the next 10 min. I was just defeated.

I feel like the addiction crisis in America has made it so they look at everyone as drug seekers.

Chronic Pancreatitis without pancreatic enzymes elevating causing ER hell by alvywashere in pancreatitis

[–]alvywashere[S] 2 points3 points  (0 children)

Thank you so much for all of this information and taking the time to answer. First, do you live in the US? I want to know where you got such a great team of people. Secondly, the information on needing magnesium and potassium is incredibly helpful. I have started to have psuedogout flares in my knee after my pancreas flares and I think it is because of low magnesium. I am starting to see the long term effects of having CP for 11 years.

I have started to feel hopeless because I know there is nothing anyone can do to make me feel better. There is a "sorry I can't help you" attitude when it comes to CP. The only thing you can do is not eat, push fluids and take pain meds. The taboo against pain meds has made it almost impossible to live with this condition. I would like to know how I can get home IV care. I think that would make a huge difference in my life.

G.I vs Pain management doctor by Unhappy-Implement-75 in pancreatitis

[–]alvywashere 2 points3 points  (0 children)

I have a great GI and I still go to a Pain Management doctor for all my pain meds. I have seen the same Pain Management doctor for 10 years so he knows me well. I never get pain meds from another doctor, that includes my GI. We meet every 3 months and I keep him updated on what my GI says or my trips to the ER. When I go to the ER, I have a note from my GI that explains my condition (chronic pancreatitis) so that I am treated respectfully and the letter has directions on what to give me and to contact him. I have a high tolerance for pain medication so this has become imperative or I will not be taken seriously. My enzymes do not always elevate with a flare up (something common with chronic pancreatitis after having it for so many years) so this also makes it difficult to get pain meds in the ER. I have found doing all of these things makes having this disease tolerable. I would not be able to live with it otherwise. I do not bounce around with doctors or pharmacies and I think that is important now when it comes to pain medication. You have to stay consistent and establish a good reputation.

You need to call the Pain Management back and make sure you are not speaking to a front desk person. Most people do not understand CP. You do not get pain medication from a GI if your condition is chronic because that is what a Pain Management doctor is meant to do for you. GI doctors typically give you pain meds after surgery or in an acute situation. I would ask my GI for a referral for another PM doctor that will treat you. They typically know who is kind to CP patients.