kyli has left a new comment on your post "Pancreatitis Supplements - Take for How Long?":

Thank you! I have been praying and praying.. even had a couple chaplains come in. I do think God is giving me the strength to get through this somehow, though I wish he'd make it go away already that's for sure! lol. :) Anyway, I somehow didn't get your email! I get a lot of spam so I sorted through to see if I could find it but its not there, maybe you could resend it? Here it is incase I mistyped it last time:

My chronic pain is different from the acute pain - the only reason I know this is because I've had 2 episodes that I can really call attacks and basically what happened is my pain escalated from being tolerable to feeling exactly how you've described before in your blogs - like I was going to die. During both of those times, I was begging for morphine which is not like me because morphine makes me feel awful but I just wanted to be knocked out. I'm still not sure what the factor was in making it escalate like that and now I live in fear that my chronic pain will turn "acute" at any moment. Right now its staying around a "5" on the pain scale but usually at night it hits about an 8 and thats when I feel like I have to take a tramadol (which I totally hate doing). Its that crampy, burning, right through the back kind of pain.

My doctors here have been trying their best, it seems. They're at least in no rush to send me home and they've sent in groups and groups of specialists, but as you know, conventional medicine only knows so much. I agree with you about the MCCP - it sounds like thats exactly it and I'm terrified about what the means for me. Regardless, as soon as I'm out of here, I'm doing things as naturally as I can, jtube or not. The doctor did tell me today that if my pain is at all down tomorrow that I could try some liquids just to see one last time if theres any chance we can avoid the jtube. With where my weights at though, that seems an unlikely option.

Response: Hey Kyli I hope by the time you see this you are discharged and feeling much better. I broke the rule I made for myself - that I would not email anyone and I did email you and you didn't get the email so maybe I need to stick with the rule - don't take that wrong I'll try to help any way I can as long as we do it here on this blog. As long as your comments/questions do not contain your email I can publish them and respond. I did write a post for you and you can read it here: Suffering with pancreatitis

Don't get to upset with your doctors especially if they are trying. I have found that sometimes I've needed to be blunt with them, blunt but kind and inform them they need to pay attention to what I tell them, that I'm not there just because I'm lonely, that there is a problem and that I want answers, correct answers. Anyway ...

I also believe that many of them really want to help but their hands are tied. They have to many "scoring" and "criteria" that comes with diagnosing now days and if things do not fall perfectly inline they can't give a diagnosis that is actually right. The people who come up with these "scoring" tools like the Apache score and other bullshit for acute pancreatitis don't seem to realize that different patients may present differently, that having all the classic symptoms is good enough and so they have to wait until more damage, sometimes severe damage is sustained until ...

"Whoops! look at that lipase level now and ... Oh crap! Is that a cyst or a watermelon? That wasn't there a couple hours ago!" Or "Holy God look at all that necrosis!" Or "Code Blue we have organ failure, shock and ... "

Well you get the idea. So ...

Be thankful that your medical team knows pancreatitis when they see it, the ones I had in the ER couldn't have diagnosed a wart on their own nose in the dark with a map and flashlight.

The same holds true for chronic pancreatitis. To many criteria to meet, I believe there are 5 criteria but "minimal change chronic pancreatitis" has become a known fact yet only those who keep up on such stuff seem to know about it.

The biggest problems I see is the time they take to arrive at a diagnosis and the way they treat pancreatitis for the most part. They totally ignore the problem - inflammation. They do nothing but withhold food orally from a patient to resolve the inflammation. To me that just doesn't make sense because for me once the inflammation is resolved good things happen. The PAIN goes away. That horrible, nasty pain and most of the nausea disappears once the inflammation has been addressed and resolved. 30 - 50 cents of Ibuprofen (800mgs) makes a world of difference within an hour, usually. You can get 200mg tabs over the counter (Advil) for what maybe 5 bucks? 4 equal 800mgs. Or your doc can write you a script for 800mg tabs of Ibuprofen. Demerol didn't work for me Kyli but Ibuprofen did, in fact it has never failed. I've had several occassions where I've had to redose cuz the acute attack was persistent and kept coming back but not often. Usually ONE 800mg dose did the trick. Oh, I do NOT use it daily, only for acute attacks and so I haven't taken it in like 6 years.

Diet - strict low fat
Supplements - grape seed extract, curcumin, vitamin C and panc enzymes
Ibuprofen - IF needed

Those three things are my secret weapons that work for me and you can find everything I did and/or still do right here on this blog.

Get well Kyli and stay well.