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getahobby
10-20-2010, 05:02 PM
Hi everybody.

Back in January of this year I had a case of acute pancreatitis that landed me in the hospital for a week. I was told to watch how much fat I consume as well as to stop drinking alcohol. We were all under the assumption that the pain would go away eventually and I would be able to begin eating normally - forgetting about alcohol for the time being.

However, after 9 months the pain is still there and I am not able to eat anything but a low fat diet. This seems like an awfully long time and both GI doctors and my CF doctor just acts like this is normal. Does anybody else have experience with pancreatitis lasting this long? Any pointers from anybody?

Thanks!

getahobby
10-20-2010, 05:02 PM
Hi everybody.

Back in January of this year I had a case of acute pancreatitis that landed me in the hospital for a week. I was told to watch how much fat I consume as well as to stop drinking alcohol. We were all under the assumption that the pain would go away eventually and I would be able to begin eating normally - forgetting about alcohol for the time being.

However, after 9 months the pain is still there and I am not able to eat anything but a low fat diet. This seems like an awfully long time and both GI doctors and my CF doctor just acts like this is normal. Does anybody else have experience with pancreatitis lasting this long? Any pointers from anybody?

Thanks!

getahobby
10-20-2010, 05:02 PM
Hi everybody.
<br />
<br />Back in January of this year I had a case of acute pancreatitis that landed me in the hospital for a week. I was told to watch how much fat I consume as well as to stop drinking alcohol. We were all under the assumption that the pain would go away eventually and I would be able to begin eating normally - forgetting about alcohol for the time being.
<br />
<br />However, after 9 months the pain is still there and I am not able to eat anything but a low fat diet. This seems like an awfully long time and both GI doctors and my CF doctor just acts like this is normal. Does anybody else have experience with pancreatitis lasting this long? Any pointers from anybody?
<br />
<br />Thanks!

Ratatosk
10-20-2010, 11:04 PM
Have they ever done an ultrasound on your gallbladder? Sometimes there are issues of gall stones, sludge, etc. that can cause similar issues with pain.

Ratatosk
10-20-2010, 11:04 PM
Have they ever done an ultrasound on your gallbladder? Sometimes there are issues of gall stones, sludge, etc. that can cause similar issues with pain.

Ratatosk
10-20-2010, 11:04 PM
Have they ever done an ultrasound on your gallbladder? Sometimes there are issues of gall stones, sludge, etc. that can cause similar issues with pain.

Shelbyville
10-21-2010, 12:44 AM
You are going through a nasty place some of us have experienced. In short the end game is your pank will zot itself out meaning the enzyme producing cells will absorbe themselves leaving no or little enzyme production so the blockages that create PANKTUS will be of no concern. Been there going through it and it's not fun. The problem you really have to watch a bad attack where the ER is the only option or you may not make it no kidding!!! As the attacks continue I've found they really hurt but not the "IM GONA DIE" those are ER only!!! So if you can make it with some home meds not OTC's real OXY's and sometime lots of them following the script!! DO NOT TAKE ANY MORE THAN DIRECTED OR GO TO THE ER!!! Call the Center most of them are used to some of us who are lucky enough to have a PANK this long.

LOW FAT ONLY!!

GOOD LUCK, Steve

Shelbyville
10-21-2010, 12:44 AM
You are going through a nasty place some of us have experienced. In short the end game is your pank will zot itself out meaning the enzyme producing cells will absorbe themselves leaving no or little enzyme production so the blockages that create PANKTUS will be of no concern. Been there going through it and it's not fun. The problem you really have to watch a bad attack where the ER is the only option or you may not make it no kidding!!! As the attacks continue I've found they really hurt but not the "IM GONA DIE" those are ER only!!! So if you can make it with some home meds not OTC's real OXY's and sometime lots of them following the script!! DO NOT TAKE ANY MORE THAN DIRECTED OR GO TO THE ER!!! Call the Center most of them are used to some of us who are lucky enough to have a PANK this long.

LOW FAT ONLY!!

GOOD LUCK, Steve

Shelbyville
10-21-2010, 12:44 AM
You are going through a nasty place some of us have experienced. In short the end game is your pank will zot itself out meaning the enzyme producing cells will absorbe themselves leaving no or little enzyme production so the blockages that create PANKTUS will be of no concern. Been there going through it and it's not fun. The problem you really have to watch a bad attack where the ER is the only option or you may not make it no kidding!!! As the attacks continue I've found they really hurt but not the "IM GONA DIE" those are ER only!!! So if you can make it with some home meds not OTC's real OXY's and sometime lots of them following the script!! DO NOT TAKE ANY MORE THAN DIRECTED OR GO TO THE ER!!! Call the Center most of them are used to some of us who are lucky enough to have a PANK this long.
<br />
<br />LOW FAT ONLY!!
<br />
<br />GOOD LUCK, Steve

getahobby
10-21-2010, 11:54 AM
I have had an MRI, Cat Scan, Ultrasound and EGD. All of them showing a somewhat 'normal' pancrease and no sign of problems with Gall Stones, Ulcers, etc. I hope Steve is right and the pancrease burns itself out; sooner rather than later.

getahobby
10-21-2010, 11:54 AM
I have had an MRI, Cat Scan, Ultrasound and EGD. All of them showing a somewhat 'normal' pancrease and no sign of problems with Gall Stones, Ulcers, etc. I hope Steve is right and the pancrease burns itself out; sooner rather than later.

getahobby
10-21-2010, 11:54 AM
I have had an MRI, Cat Scan, Ultrasound and EGD. All of them showing a somewhat 'normal' pancrease and no sign of problems with Gall Stones, Ulcers, etc. I hope Steve is right and the pancrease burns itself out; sooner rather than later.

CFkitty
10-22-2010, 09:16 PM
I've been suffering with chronic pancreatitis for 3 1/2 years. It has not eased. I have pain and nausea. Eating food makes it worse. Eating protein makes it even more worse (pardon the grammar).

I have been told that the pancreas will burn out at some point (5 years?). I pray for that, because the pain is daily and sometimes constant, like a brick is stuck inside. My gallbladder is out, I've had the Sphincter of Oddi procedure, I've had my appendix and part of my colon out. Specialists in Boston said a pain block will not help (they say it only helps cancer patients). I do have pancreatic pseudocysts but so far, they are benign.

Even though I've had 3 lung tuneups in the past 18 months, my pancreatitis pain, nausea and medication side effects are the most debilitating part of my CF right now. It's made my quality of life plummet. All I can say is that you're not alone.

CFkitty
10-22-2010, 09:16 PM
I've been suffering with chronic pancreatitis for 3 1/2 years. It has not eased. I have pain and nausea. Eating food makes it worse. Eating protein makes it even more worse (pardon the grammar).

I have been told that the pancreas will burn out at some point (5 years?). I pray for that, because the pain is daily and sometimes constant, like a brick is stuck inside. My gallbladder is out, I've had the Sphincter of Oddi procedure, I've had my appendix and part of my colon out. Specialists in Boston said a pain block will not help (they say it only helps cancer patients). I do have pancreatic pseudocysts but so far, they are benign.

Even though I've had 3 lung tuneups in the past 18 months, my pancreatitis pain, nausea and medication side effects are the most debilitating part of my CF right now. It's made my quality of life plummet. All I can say is that you're not alone.

CFkitty
10-22-2010, 09:16 PM
I've been suffering with chronic pancreatitis for 3 1/2 years. It has not eased. I have pain and nausea. Eating food makes it worse. Eating protein makes it even more worse (pardon the grammar).
<br />
<br />I have been told that the pancreas will burn out at some point (5 years?). I pray for that, because the pain is daily and sometimes constant, like a brick is stuck inside. My gallbladder is out, I've had the Sphincter of Oddi procedure, I've had my appendix and part of my colon out. Specialists in Boston said a pain block will not help (they say it only helps cancer patients). I do have pancreatic pseudocysts but so far, they are benign.
<br />
<br />Even though I've had 3 lung tuneups in the past 18 months, my pancreatitis pain, nausea and medication side effects are the most debilitating part of my CF right now. It's made my quality of life plummet. All I can say is that you're not alone.

Momtana
10-23-2010, 11:48 AM
My doctor explained it this way. CFers who are pancreatic sufficient who develop pancreatitis may experience 3-4 episodes of pancreatitis a year for about 3-4 years before the pancreas burns out, as Steve explained. My understanding is that a clear liquid diet during an episode can bring you through easier. Some of us can benefit from taking nothing by mouth and getting IV fluids during an episode.

Momtana
10-23-2010, 11:48 AM
My doctor explained it this way. CFers who are pancreatic sufficient who develop pancreatitis may experience 3-4 episodes of pancreatitis a year for about 3-4 years before the pancreas burns out, as Steve explained. My understanding is that a clear liquid diet during an episode can bring you through easier. Some of us can benefit from taking nothing by mouth and getting IV fluids during an episode.

Momtana
10-23-2010, 11:48 AM
My doctor explained it this way. CFers who are pancreatic sufficient who develop pancreatitis may experience 3-4 episodes of pancreatitis a year for about 3-4 years before the pancreas burns out, as Steve explained. My understanding is that a clear liquid diet during an episode can bring you through easier. Some of us can benefit from taking nothing by mouth and getting IV fluids during an episode.

lhkraus
10-26-2010, 12:55 AM
wow, i've never heard of this. I'm so sorry for your suffering. Does this situation only happen to CFers who are pancreatic sufficient? I'm under the impression that people who've been insufficient their whole lives will have "burned out" their pancreas over time.

lhkraus
10-26-2010, 12:55 AM
wow, i've never heard of this. I'm so sorry for your suffering. Does this situation only happen to CFers who are pancreatic sufficient? I'm under the impression that people who've been insufficient their whole lives will have "burned out" their pancreas over time.

lhkraus
10-26-2010, 12:55 AM
wow, i've never heard of this. I'm so sorry for your suffering. Does this situation only happen to CFers who are pancreatic sufficient? I'm under the impression that people who've been insufficient their whole lives will have "burned out" their pancreas over time.

MaksNana
11-13-2010, 06:25 AM
Hi, I can only tell you about the experience my loved one has had. She is PI, on enzymes, and since last Xmas has been admitted into the hospital about 8 times for Pancreatitis!

When a CF child begs you to take her to the hospital 'now', you know it's bad. She could be absolutly fine one min. and suddenly turn pale, lethargic to the point of not able to stand up, and start vomiting 'bile'.

Many of the doctors are shocked and very concerned. She is put on Morphine, antibiotics, other pain meds also, and fluids, and nothing by mouth. Now, I don't know about someone saying you can stay home and treat pancreatitis. We were told, she must be admitted or she would be of great risk of dying. Which of course when this happens to her, common sense alone would tell me , get her to the hospital.

We were told it's the most horrible pain a person can experience. I believe it, it has been horrible to see her in such terrible pain, and shocked at how suddenly it can hit her.
God Bless any of you that have experienced Pancreatitis.<img src="i/expressions/brokenheart.gif" border="0">

MaksNana
11-13-2010, 06:25 AM
Hi, I can only tell you about the experience my loved one has had. She is PI, on enzymes, and since last Xmas has been admitted into the hospital about 8 times for Pancreatitis!

When a CF child begs you to take her to the hospital 'now', you know it's bad. She could be absolutly fine one min. and suddenly turn pale, lethargic to the point of not able to stand up, and start vomiting 'bile'.

Many of the doctors are shocked and very concerned. She is put on Morphine, antibiotics, other pain meds also, and fluids, and nothing by mouth. Now, I don't know about someone saying you can stay home and treat pancreatitis. We were told, she must be admitted or she would be of great risk of dying. Which of course when this happens to her, common sense alone would tell me , get her to the hospital.

We were told it's the most horrible pain a person can experience. I believe it, it has been horrible to see her in such terrible pain, and shocked at how suddenly it can hit her.
God Bless any of you that have experienced Pancreatitis.<img src="i/expressions/brokenheart.gif" border="0">

MaksNana
11-13-2010, 06:25 AM
Hi, I can only tell you about the experience my loved one has had. She is PI, on enzymes, and since last Xmas has been admitted into the hospital about 8 times for Pancreatitis!
<br />
<br />When a CF child begs you to take her to the hospital 'now', you know it's bad. She could be absolutly fine one min. and suddenly turn pale, lethargic to the point of not able to stand up, and start vomiting 'bile'.
<br />
<br />Many of the doctors are shocked and very concerned. She is put on Morphine, antibiotics, other pain meds also, and fluids, and nothing by mouth. Now, I don't know about someone saying you can stay home and treat pancreatitis. We were told, she must be admitted or she would be of great risk of dying. Which of course when this happens to her, common sense alone would tell me , get her to the hospital.
<br />
<br />We were told it's the most horrible pain a person can experience. I believe it, it has been horrible to see her in such terrible pain, and shocked at how suddenly it can hit her.
<br />God Bless any of you that have experienced Pancreatitis.<img src="i/expressions/brokenheart.gif" border="0">

mamerth
11-13-2010, 01:38 PM
I had pancreatitis for years off and on... finally one year my gall bladder developed stones and they yanked my gall bladder out. I was on a low fat diet for a short period of time after my gall bladder removal. Low fat was all that my body was able to process-- everything else was painful or would case "bathroom issues". After a year or so things evened out and I could add fatty foods back to my diet.... the right dose of enzymes also helped greatly.

Yes, it is one of the worst pains... ever.

mamerth
11-13-2010, 01:38 PM
I had pancreatitis for years off and on... finally one year my gall bladder developed stones and they yanked my gall bladder out. I was on a low fat diet for a short period of time after my gall bladder removal. Low fat was all that my body was able to process-- everything else was painful or would case "bathroom issues". After a year or so things evened out and I could add fatty foods back to my diet.... the right dose of enzymes also helped greatly.

Yes, it is one of the worst pains... ever.

mamerth
11-13-2010, 01:38 PM
I had pancreatitis for years off and on... finally one year my gall bladder developed stones and they yanked my gall bladder out. I was on a low fat diet for a short period of time after my gall bladder removal. Low fat was all that my body was able to process-- everything else was painful or would case "bathroom issues". After a year or so things evened out and I could add fatty foods back to my diet.... the right dose of enzymes also helped greatly.
<br />
<br />Yes, it is one of the worst pains... ever.