1) jc cool nottingham has left a new comment on your post "Pancreatitis Diet - Diet for Chronic Pancreatitis":
hi my names jason the last 2 month i have beeen at an e every damn day :( i havent ate in 2 month just water n fortisip juice which is costing a bomb! 14 year bck they found out i had sudasis drained n yes they left scar tissue n now they just give hydrocodeine im on creon also but i just read it has pork! in it i really neeed your help real bad im scared to eat anything i have been takin bluueberry juice i have a mri scan on 31st december plz plz plz i am begging u will u email i dont want to die i will do watever it takes i have a 2 year old boi jaydon he lives with me full time i have not been toilet for poo in 2 month also but it seems the hospital r not even botherd n thats mean n evil in my eyes plz help
Response: Hi JC, don't worry about the creon. Yes I know I mentioned that I wouldn't take it cuz it is made using pig products but I'm ANAL! Pork makes me sicker than a dog and I just can't get my head wrapped around the idea that pig digestive enzymes are ok even though pig organs etc have been shown to be a close match to human and is most likely why pig enzymes are used in creon.
There are many people on creon and they are helped by it. I know of several who are on it and are benefiting nicely! Most people who are prescribed creon do well, some seem to gain weight but that doesn't mean there is something wrong with it. Some gain weight, others don't but most who use it see benefit so don't stop taking it, especially without consulting you doctor!
I also know one lady who is using digestive enzymes called Now Foods Pancreatin. I use a similar product from Now Foods too but the Pancreatin is made from porcine (pigs) and the Now Super Enzymes I use is not, I think mine comes from bovine (cow) enzymes and it contains ox bile and other stuff but she is very happy with her formula and it is a tad stronger than the super enzymes I use so do NOT take EVERYTHING I say as the gold standard. I'm just a guy man, just a guy and sometimes I am WRONG.
The rest of your questions need to be addressed by your doctor as well. I can NOT diagnose or give blatant medical advice and I walk a fine really gray line just telling people what I have done to resolve certain problems and what I still currently do.
I know you don't want to die. Hell I don't want to die, nobody when it gets right down to the time wants to die and I wish I could be more help, seriously, I do but, I am not a doctor. Hell, I barley graduated from high school.
All I can say is creon seems to work for others, see what your mri shows on the 31st, spend some time reading this blog (diet and supplement info are all there) and I hope you get some good answers and get well. Get well JC and stay well.
Hi there,
This is Kyli - Ive been browsing your site again all day. You replied to me last month and I appreciated it so much. Sorry for not getting back to you! I have been so sick and I ended up back in the hospital. I'm now on a picc line which gave me blood clots - what a mess and of course they have no idea what to do with me. They want to send me off to another hospital. My lipase is coming down but they believe the amount of pain I'm in and haven't given up on me. That being said, nothing they're doing / suggesting is of any value to me. You obviously know all about that! Its so frustrating.
Anyway, I know this is a lot to ask but I was wondering if there's any way you could talk with myself or my fiancé over the phone briefly about a couple of things? I am so so sick and of course they're talking about an ERCP now and I just don't know what to do. I thought maybe if I could talk with you (you are by far the most knowledgeable person I have found online when it comes to the pancreas!) briefly about my situation, you might be able to offer some insight. I have been in constant pain - like one long acute bout basically, but its not considered chronic because I have no visible damage on any scans including EUS. I'm at a loss. I keep trying to eat and its unbearable.
Anyway, if that would be at all possible my email is ... thank you so much and hope you're doing well!!
Kyli
Response: See below after next comment from Kyli
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.
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.
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