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Old 03-22-2008, 05:48 AM   #1
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Unhappy Pancreatitus - advise please......

Hi
i am new to the boards and am glad that i stumbled across this forem. over the past few weeks i have looked at so many websites and just having no luck....
this is my story.....
6 weeks ago my dad was rushed to emergency and was diahnosed with pancreatitus. i had no idea what this was and have done so much research from the small amount available but would really like to talk to osmeone that has had it or knows someone that has or simply can give me advice.
My dad was in hospital for four weeks. in this time his weight dwindled by 15kg as he could not eat. they gave him a nose tube and he has been on morphine since he was omitted to hospital. now he is at home he still can't keep food down, still vomitting all day, can't even keep fluids down. took him again to the docs today who basically said he needs time. he doesn't seem to be getting any better, he has lost more weight since being out of hospital and he seems just so down its like he wants to give up.
i am so scared for him.
every where i turn is a dead end and after talking to so many docs no one seems to be able to help him. i feel like i need to do something because time doesn't seem to be on his side even though the docs are saying he has to ride it out.
if you made it this far thankyou so much for taking the time
Jodi

Last edited by ms_mod; 03-22-2008 at 06:58 AM. Reason: Removed banned word. If a word comes up like this *** in your post that word is banned on this website. Ms_Mod

 
Old 03-22-2008, 07:10 AM   #2
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Re: Pancreatitus - advise please......

sorry your dad is suffering with this. my son(then 12) suffered with this horrid condition a few years back while waiting for a new liver. don;t know exactly why he ended up with it but all i know is he was suffering with alot of pain. one BIG treatment they have to use here tho unfortuently is NOT EATING solid or any food at all. the pancreas IS inflammed(the name panrea-titis MEANS inflammed pancreas). this IS the best treatment, i am rather shocked that they actually released your dad knowing he cannot even keep food or 'fluids"? down? he wont get better til this passes. is there other docs or a different hospital that you can take him to?

my son had a feeding tube down his nose for quite a few weeks to give him plain nutrition in place of not eating any food,along with heavy duty IV antibiotics. honestly, i am as confused as you are about your dads treatment. are they at least giving him something for the pain?

while i do know that with pancreatitis,you do have to kind of just "ride it out',it does take time,what i DON"T understand is why his docs do not have him back in the hospital "riding it out" where he will at least have the NG tube back and be getting good nutrition. not to mention just good pain management. thats just not right at all. to send a patient who they KNOW is not able to actually keep anything down home is pretty sick actually.

if i were you,in this situation,i would just keep calling and calling the docs and bugging the living heck out of them til they just DO the right thing here for your dad. from what you have stated about his symptoms and current condition,he could really honestly starve to death while just 'riding this out" at home. he simply is not getting what the body needs everyday just to sustain life. either keep calling his docs til someone 'gets it' OR just take him back to the ER of the hospital he was at and have them check all his current labs and have him rehydrated and simply ask them,"do YOU honestly think it is okay for a man in his condition to actually be at home right now"? this just doesn't sound right at all to me either and you have every reason to be concerned if nothing has changed with your fathers condition and they sent him home like this.

i would really just take him back to the ER or even try a different hospital if this one will not do the right thing and just admit him asap. but he DOES need to be in a hospital right now for treatment. he just NEEDS to really be there if he cannot actually eat or drink fluids. geez,these docs are really unreal.

just keep in mind that you ARE in the right here and i would push anyone(docs,hospital)you have to just to get him readmitted. just don't take NO for an answer when you know you are trying to do the best possible thing for anyone and you know its the right thing to do. i have had to push docs and nurses and other 'medical professionals' during my sons illnesses and with my medical stuff too. sometimes you just HAVE TO speak loudly and push people into simply doing the right thing. sad but true.

i really do wish you lots of luck with this. one really big help to you and your father would be to really research the heck out of the proper way to treat pancreatitis,which you are doing right now. but being able to counter anything any doc says to you that you know is not true with actual facts will get your needs met much more quickly,believe me. this is what i had to do with my and my sons conditions. just understand fully what you are dealing with and the PROPER treatment options availiable,then hit them hard. the docs simply cannot argue the facts. once they know that you are aware,it will make a big difference in how your fathers treatment is. but he REALLY needs to be back in hospital sooner vs later.

please keep me posted as to how things go. i really do hope they will just re admit him and get him better soon. you DO have 'right' on your side. good luck, FB
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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Old 03-22-2008, 07:46 AM   #3
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Re: Pancreatitus - advise please......

thankyou so very much for your reply i really truly apreciate it. Its so nice to finally ask questions and have someone answer them.
firstly i am sorry to hear that about your son that would have been very hard to see your son go through. i hope he has no problems now.
i really think i willl have to push because to be honest i feel like my father will starve to death or it will be too late if you know what i mean. Today on his menu was "NOTHING" a half a cup of water which not much sooner than he drank it, it came back up.
My Mum took him back to his old GP today because she is so worried about him as well. this dod has been his doc for 25 odd years so knows him well. the first thing he said was "what the hell have you done to yourself" now if that isn't a sign that this man is incredibly ill then i don't know what is. this doc too said that as long as he is trying to eat then being at home in his own environment is best for him. okay i believe that to some degree but Dad is scared. he is scared of the inevitable. they have given him some medication oxi"something" that is morphine based. his doc today told him to drop all tablets. he usually suffers high blood pressure and takes medication for that as well and has been told to drop them as well as his BP is 98/52 which to me seems way too low?!?!?!?!?!?
whilst he was in hospital they were giving him a high protein drink through his tube and he slowly seemed to getting more colour again back in his face and perked up again but now he looks even worse than before except he says the pain is not as bad. on his ultrasound at the hospital they first noted his pancreas was etremely enlarged, then about 10 days later they came to him and said that about 1/3 of his pancreas had died. his blood sugar levels have been perfect so far we can rule out diabetes although th docs have said that the pancreas will probably just fall off and he will pass it. are you serious? is this really how they treat it? i just don't understand. i walked in to his room at the hospital and the nurse was getting angry at him because he couldn't walk and she was saying he needs to motivate himself, i just looked at her with tears in my eyes and pleaded to just let him rest for the day. he is so weak and i know he needs to keep his lungs sufficient and all that but he just has no energy.
at the hospital he was on IV antibioics and a drip right up until the hour they sent him home. he can hardly hold a conversation, his attention span seems to sway. he looks almost straight through you at stages as if he isn't even there
i am driving up to see him first thing in the morning and i will assess him again and may even pack his bags and get him back down the hospital.
i will keep you informed and thankyou yet again.

 
Old 03-22-2008, 04:23 PM   #4
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Re: Pancreatitus - advise please......

Jodestar, I have had pancreatitis twice. Both times my white blood count was extremely high. They admitted me to hospital both times. Stayed about a week on pain meds and the first few days nothing by mouth. Not even water. Then they introduced clear liguids, like broth, italian ices etc then gradually soft food as in pudding, jello etc, Did you know a person can become septic with a bout of pancreatitis? If he is still this sick, he must go back to ER. That is a low and scary blood pressure. I wonder if there is any underlying problems? Did they do any tests, I had a test done that showed my spincter wasn't working and I needed a stent placed in the pancreas. I will tell you that the pain is horrendous! Worse than child birth Tell them to check his blood again, especially his liver enzyes, and his digestive enzyes. When you have pancreatitis, your white blood count goes through the roof due to the infection and inflammation. I hope he has a very good internest or gastro doctor. Ask for the best doctor there. Good luck to you dad and please check out the ER again. By the way, how do you pass a bit of dead pancreas? That just doesn't make sense.

Last edited by Linda_in_NJ; 03-22-2008 at 04:32 PM. Reason: spelling

 
Old 03-23-2008, 03:54 AM   #5
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Lightbulb Re: Pancreatitus - advise please......

This is absolutely in the "for what it's worth" category as I have nothing to offer otherwise than "pressure the medical professionals to do their jobs and actually provide some help" but here goes:

In the early 90s, the actor Michael Landon was diagnosed with pancreatic cancer. Since the pancreas does the job of producing the enzymes used for digestion (along with the liver), when it's not doing its job well the digestion is minimal or nonexistent. Anyway, I digress. Michael Landon chose to appear on The Tonight Show to discuss his condition and prognosis. He looked good. He mentioned that he was drinking papaya juice. My guess is that he was doing that on the advice of some of the best in the business at that time, and that papaya juice is able to nourish you and/or stay down better when your pancreas is compromised.

I had a bad bout of something a few years back and I believe pancreatitis was a part of it ... I used an Epsom Salt/Olive Oil flush and it worked, but it could be too rough to try on him.

 
Old 03-23-2008, 08:50 AM   #6
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Re: Pancreatitus - advise please......

unbelieveable that his doc did not actually direct him straight back to the hospital. stupid really. if he cannot simply hold down food or fluids,THAT in and of itself is a very real immediate threat to his life,he WILL simply starve to death at home. he is not getting what he needs there and has to be admitted just to at least get him proper nutrition and prevent other possible complications from developing. you are very right about him possibly getting some level of lung issues too in his debilitated state. if he is not actually moving enough to fully expand and the deflate his lungs,he can very easily end up with some level of pneumonia. his body systems are very much being compromised right now. his kidneys very much if he is not able to take in and keep fliuds down. this is where the constantly running IV in the HOSPITAL really helps. it keeps the body hydrated and the kidneys running normally. he just needs sooo many things he simply cannot get at home right now.

if i were you,i would gather him up and present him to the local ER just like he is and you tell them everything he is NOT doing,like eating and keeping it down? his blood vessels will also start to collapse without proper hydration. he really just NEEDS to be in the flippin hospital right now til he can at least keep food and fluids down. they just never ever should have sent him home in that state. never.

i would really start demanding things be done at this point,you are done being nice and waiting. this just can become(if not already) a very major serious situation being he has been like this for so long already. i would not leave that ER til they agree to admit him. stand your ground,you ARE on the side of right here and i would push it as far as i could go at this point. sometimes we just have to advocate for the people we care about when we KNOW they are not being given proper care. this whole situation just never should have happened. i wish you tons of luck with this. keep pushing til you get your dads needs met. thats the best possible advice i can give you. this is what i have had to do many times for me and my son. you just ARE doing the right thing here. please keep us posted. now go kick some medical a**. FB
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 03-24-2008, 02:42 AM   #7
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Re: Pancreatitus - advise please......

wow thankyou all so much for your kind words and support. you will all be happy to know that i went over to my Dad's this morning, packed his bags and took him to the ER. there i sat for 4 hours until they took him in and gave him a bed. he is still in the ER and hopefully by the morning will have his own room. i hate our hospital system here!!!!! i know it is not the docs and nurses fault but seriously it is appalling. but he is in and hopefelly will get the strength and nutrients in to his body to fight this horrible disease. i had to leave him to come home to my 3 year old twins who i can honestly say are the only things giving him the will to live at the moment.
thankyou to each and every one of you and i will keep posted with his progress.

 
Old 03-24-2008, 07:16 AM   #8
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Re: Pancreatitus - advise please......

great job! really,you just simply HAD TO do what you did. he was not going to get any better at home,just worse til they really just couldn't 'do" for him anymore,you know what i mean? you definitely did the right thing in taking him back there. hopefully they will now do "their" right thing.

just a bit of advice here for ya, if all this has been going on and you really don't know a whole lot about just what his actual condition was or even is right now,just have him sign a release so you can obtain ALL of his ongoing medical records. this would be the very best way for you to see just how he is doing per what the docs wrote about him and the nursing notes too. these very important hospital records would also tell you just exactly what his overall condition was like when these idiots actually sent him home before. this info really needs to be gone thru by you. if you cannot understand something,either look it up in one of the medical info sites or post it here and i will or someone else will try and help you out with that. i would really like to know just what in gods name these people(alleged medical professionals??) were actually thinking when they sent him home despite the fact he was not yet even able to keep food down. it was just sooo incredibly stupid and could have resulted in some pretty dire consequences for your dad.

trust me,you did the best possible thing for him by taking him back there. hopefully they will help him this time around. if they screw up again or he seems to not be getting the proper care,speak up for him and demand better. OR you do have an option hopefully of pulling him out and having him transferred to a better hospital? don't know that situation,but it could be a last resort option if things go badly again.

what that hospital did really was appalling and you had every right to be angry and very concerned. it was just way too soon yet for him to be out. you ARE a really great son by the way. please keep us posted as to how things are going with your dad jode. now that he will be getting his real needs met, i am hoping this will all be over soon and he can be back with his grand babies soon. sounds like you have your hands full there too,lol. just keep a close eye on how things are going at that hospital and get those records too. you really need to know just what his real medical status was when these putzes sent him home knowing he could not keep things down, yikes. take care jode, FB

 
Old 04-02-2008, 06:12 PM   #9
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Re: Pancreatitus - advise please......

I have had pancreatitis twice in 5 years and I now have high enzymes again and probably have it again. My pancreatitis was due to being allergic to my high-blood presure meds. I can take them for about 1 year almost to the day before I start having syptoms (itchy red palms of hands, bottoms and tops of feet, top of the head usually starts two weeks prior to the pain in the gut). There is no cut and dry to pancreatitus. You need it to survive as I've been told. The first two times I had it they hospitalized me for several days. (IV's and nothing going into the mouth) So, I'm trying the no solids only clear liquids to see if my enzyme levels will go down. Bottomline: Your pancreas needs a rest. I hope this has helped. Or if any of you have suggestions for me, please post. Thanks ziggidrooper

 
Old 04-14-2008, 06:55 PM   #10
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Re: Pancreatitus - advise please......

just thought i would post an update to the kind people who gave me advice. my Dad is still in hospital. after he was readmitted to hospital he went down hill very very fast!!!!!!!! he couldn't eat or drink ANYTHING and he didn't have a nose feed in so was not receiving any nutrients. they did a few more scans on my Dad and it was late found there was a mass which they found although they could not locate the exact position of the mass except they could see it was near the bowel. After a colonoscopy the mass showed up it was cancer. two days later my Dad was in for surgery!!!!!!! when they opened him they were given alot of surprises!!!!! the cancer mass was alot larger then expected. we were praying he would not need a bag and he had a one in ten chance of not having to have one. 13 hours waiting in ICU and he was finally wheeled back to his room where we were told they had to give him two bags. he had a 11cm mass of cancer in his bowel through his large and small intestine, his secum has been removed and part of the colon. and to top it off he had a fluid mass of 200ml on his pancreas which burst during the surgery which just added to the madness as he then had acids going through his blood.
since the operation we have had many days when we thought we would be saying goodbye to Dad, he started vomiting black coffee granules which was a sure sign of internal bleeding. he became annorexic and aneamic (sp?). they gave him a blood transfusion and he had 6 units of blood (1500ml) so far. two units of plasma to thicken his blood and now has a pick line for protein. the last few days i have seen the biggest turn around with Dad. he is no longer grey and has managed to put weight on over noght. even though he is puffy because it is fluid retention at least he doesn't look gaunt anymore. we are still waiting on the biopsy results and we know he has to have chemo now which is meant to start this week but he is still too week because of his pancrreatitus. he also still has a bleed in his pancreas. they gave him an angiagram but could not locate the bleed/leak. his doctor wants to try again because they want to avoid surgery at all costs. he is losing between 200ml - 350ml of blood a day.
we are still staying positive and just taking every day as it comes. i have never felt so helpless and cried so many tears in my life. My Dad has been in hospital for 8 weeks now since his first admission and only now have i seen any improvement. he is black and blue with bruises from all of his needles, drains and drips but we have to keep moving forward. we still have a looooooong road to recovery and no doubt still a few hurdles to jump but fingers crossed they aren't as hard as the last three weeks.
i wish you all the best. who ever would have thought eight weeks ago when my Dad was taken to hospital with what we thought was food poisoning would end up being like this.
thanks for reading sometimes it helps just to get it out
Jodestar

 
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