Pancreatitis

[TrophyGal]

I will be 37 tomorrow and I was diagnosed with CF when I was 19. I'm married 15 years now with 3 sons. My husband is not a carrier. I can't remember my mutations right now; however, I will call this week to get that info. My lungs are very clear and I've never needed hospitalization for a "Tune Up". Being overweight is an issue for me! I have had 6 or 7 sinus surgeries...lost count! My worst nightmare is the pancreatitis.

I've had the pancreatitis now for about 11 years. For the first 8 years I was hospitalized for it about 3 times. Then it was about every six months, now every two months for this last year. Actually...I haven't been going to the hospital anymore for it...I just stay home, sleep and try not to eat or drink anything. After a few days, my husband drives me to the clinic to get IV's fluid and pain meds (IV)for a few hours. It usually lasts about 4-7 days. VERY painful!!! My husband and I think it is very odd of how I sleep so much when I have it. I can sleep for 22 of the 24 hours in a day. Mind you, I try not to take pain pills as to not put them in my stomach...so that is not causing drowsiness.

I've had great CF docs for my lungs; however, have never come accross a good GI doc. Pretty much all I ever hear is that there is nothing you can do for it. I'm told not to put anything in my stomach so it will give my pancrease a rest.

Just curious on other CF'ers how you handle the pancreatitis. I would appreciate any info you have to offer. Thanks in advance!

 

[TrophyGal]

I will be 37 tomorrow and I was diagnosed with CF when I was 19. I'm married 15 years now with 3 sons. My husband is not a carrier. I can't remember my mutations right now; however, I will call this week to get that info. My lungs are very clear and I've never needed hospitalization for a "Tune Up". Being overweight is an issue for me! I have had 6 or 7 sinus surgeries...lost count! My worst nightmare is the pancreatitis.

I've had the pancreatitis now for about 11 years. For the first 8 years I was hospitalized for it about 3 times. Then it was about every six months, now every two months for this last year. Actually...I haven't been going to the hospital anymore for it...I just stay home, sleep and try not to eat or drink anything. After a few days, my husband drives me to the clinic to get IV's fluid and pain meds (IV)for a few hours. It usually lasts about 4-7 days. VERY painful!!! My husband and I think it is very odd of how I sleep so much when I have it. I can sleep for 22 of the 24 hours in a day. Mind you, I try not to take pain pills as to not put them in my stomach...so that is not causing drowsiness.

I've had great CF docs for my lungs; however, have never come accross a good GI doc. Pretty much all I ever hear is that there is nothing you can do for it. I'm told not to put anything in my stomach so it will give my pancrease a rest.

Just curious on other CF'ers how you handle the pancreatitis. I would appreciate any info you have to offer. Thanks in advance!

 

[TrophyGal]

I will be 37 tomorrow and I was diagnosed with CF when I was 19. I'm married 15 years now with 3 sons. My husband is not a carrier. I can't remember my mutations right now; however, I will call this week to get that info. My lungs are very clear and I've never needed hospitalization for a "Tune Up". Being overweight is an issue for me! I have had 6 or 7 sinus surgeries...lost count! My worst nightmare is the pancreatitis.

I've had the pancreatitis now for about 11 years. For the first 8 years I was hospitalized for it about 3 times. Then it was about every six months, now every two months for this last year. Actually...I haven't been going to the hospital anymore for it...I just stay home, sleep and try not to eat or drink anything. After a few days, my husband drives me to the clinic to get IV's fluid and pain meds (IV)for a few hours. It usually lasts about 4-7 days. VERY painful!!! My husband and I think it is very odd of how I sleep so much when I have it. I can sleep for 22 of the 24 hours in a day. Mind you, I try not to take pain pills as to not put them in my stomach...so that is not causing drowsiness.

I've had great CF docs for my lungs; however, have never come accross a good GI doc. Pretty much all I ever hear is that there is nothing you can do for it. I'm told not to put anything in my stomach so it will give my pancrease a rest.

Just curious on other CF'ers how you handle the pancreatitis. I would appreciate any info you have to offer. Thanks in advance!

 

[TrophyGal]

I will be 37 tomorrow and I was diagnosed with CF when I was 19. I'm married 15 years now with 3 sons. My husband is not a carrier. I can't remember my mutations right now; however, I will call this week to get that info. My lungs are very clear and I've never needed hospitalization for a "Tune Up". Being overweight is an issue for me! I have had 6 or 7 sinus surgeries...lost count! My worst nightmare is the pancreatitis.

I've had the pancreatitis now for about 11 years. For the first 8 years I was hospitalized for it about 3 times. Then it was about every six months, now every two months for this last year. Actually...I haven't been going to the hospital anymore for it...I just stay home, sleep and try not to eat or drink anything. After a few days, my husband drives me to the clinic to get IV's fluid and pain meds (IV)for a few hours. It usually lasts about 4-7 days. VERY painful!!! My husband and I think it is very odd of how I sleep so much when I have it. I can sleep for 22 of the 24 hours in a day. Mind you, I try not to take pain pills as to not put them in my stomach...so that is not causing drowsiness.

I've had great CF docs for my lungs; however, have never come accross a good GI doc. Pretty much all I ever hear is that there is nothing you can do for it. I'm told not to put anything in my stomach so it will give my pancrease a rest.

Just curious on other CF'ers how you handle the pancreatitis. I would appreciate any info you have to offer. Thanks in advance!

 

[TrophyGal]

I will be 37 tomorrow and I was diagnosed with CF when I was 19. I'm married 15 years now with 3 sons. My husband is not a carrier. I can't remember my mutations right now; however, I will call this week to get that info. My lungs are very clear and I've never needed hospitalization for a "Tune Up". Being overweight is an issue for me! I have had 6 or 7 sinus surgeries...lost count! My worst nightmare is the pancreatitis.
<br />
<br />I've had the pancreatitis now for about 11 years. For the first 8 years I was hospitalized for it about 3 times. Then it was about every six months, now every two months for this last year. Actually...I haven't been going to the hospital anymore for it...I just stay home, sleep and try not to eat or drink anything. After a few days, my husband drives me to the clinic to get IV's fluid and pain meds (IV)for a few hours. It usually lasts about 4-7 days. VERY painful!!! My husband and I think it is very odd of how I sleep so much when I have it. I can sleep for 22 of the 24 hours in a day. Mind you, I try not to take pain pills as to not put them in my stomach...so that is not causing drowsiness.
<br />
<br />I've had great CF docs for my lungs; however, have never come accross a good GI doc. Pretty much all I ever hear is that there is nothing you can do for it. I'm told not to put anything in my stomach so it will give my pancrease a rest.
<br />
<br />Just curious on other CF'ers how you handle the pancreatitis. I would appreciate any info you have to offer. Thanks in advance!
<br />
<br />

 

[Fancymushroom]

Poor you! I have'nt had pancreatitis, but thought I should reply.
You didn't mention if you were pancreatic insufficient - I assume you are? If so what enzymes ect are you taking?

Do you lose weight when you have an attack from not eating, or more or less stay the same.
I'm guessing you avoid alcohol, but have you found any other food or drink brings an attack on?

Every two months seems an awful lot and perhaps they could try putting you on carbocystiene to prevent mucus building up and blocking the duct? Just a thought. XXX

 

[Fancymushroom]

Poor you! I have'nt had pancreatitis, but thought I should reply.
You didn't mention if you were pancreatic insufficient - I assume you are? If so what enzymes ect are you taking?

Do you lose weight when you have an attack from not eating, or more or less stay the same.
I'm guessing you avoid alcohol, but have you found any other food or drink brings an attack on?

Every two months seems an awful lot and perhaps they could try putting you on carbocystiene to prevent mucus building up and blocking the duct? Just a thought. XXX

 

[Fancymushroom]

Poor you! I have'nt had pancreatitis, but thought I should reply.
You didn't mention if you were pancreatic insufficient - I assume you are? If so what enzymes ect are you taking?

Do you lose weight when you have an attack from not eating, or more or less stay the same.
I'm guessing you avoid alcohol, but have you found any other food or drink brings an attack on?

Every two months seems an awful lot and perhaps they could try putting you on carbocystiene to prevent mucus building up and blocking the duct? Just a thought. XXX

 

[Fancymushroom]

Poor you! I have'nt had pancreatitis, but thought I should reply.
You didn't mention if you were pancreatic insufficient - I assume you are? If so what enzymes ect are you taking?

Do you lose weight when you have an attack from not eating, or more or less stay the same.
I'm guessing you avoid alcohol, but have you found any other food or drink brings an attack on?

Every two months seems an awful lot and perhaps they could try putting you on carbocystiene to prevent mucus building up and blocking the duct? Just a thought. XXX

 

[Fancymushroom]

Poor you! I have'nt had pancreatitis, but thought I should reply.
<br />You didn't mention if you were pancreatic insufficient - I assume you are? If so what enzymes ect are you taking?
<br />
<br />Do you lose weight when you have an attack from not eating, or more or less stay the same.
<br />I'm guessing you avoid alcohol, but have you found any other food or drink brings an attack on?
<br />
<br />Every two months seems an awful lot and perhaps they could try putting you on carbocystiene to prevent mucus building up and blocking the duct? Just a thought. XXX

 

[mamerth]

I had my gall bladder removed and things have been tons better.

 

[mamerth]

I had my gall bladder removed and things have been tons better.

 

[mamerth]

I had my gall bladder removed and things have been tons better.

 

[mamerth]

I had my gall bladder removed and things have been tons better.

 

[mamerth]

I had my gall bladder removed and things have been tons better.

 

[AnD]

I'm so sorry about your pancreatitis- been there, done that- owwwwww.

After years of having crappy/no GI, I finally have a good one, who is familiar with cf <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Yep, get your gallbladder checked <b>AND your common bile duct</b>(also for sludge, not just stones), get checked for H. pylori -I had that, just gave me stomach aches, etc., but no ulcers- treated it, and I think I have had 2 stomach aches in 2 years. You might want to ask about taking a few enzymes too. They are supposed to help, by taking some of the load off your pancreas, even if you are overweight- I take 1-2 Viokase16's with greasy meals. (I am also a member of the "unusually plump" cfers' club <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). My grandmother (no cf) had chronic bouts of pancreatitis, and took enzymes with meals to help keep it under control.

I haven't had an attack in almost 4 years now(thankfully!), though I do still get occasional pains from bile stones in my bile duct from my liver issues (which is why I say have them check the common bile duct- crap in there can back up both your pancreas and your liver). Good luck.

 

[AnD]

I'm so sorry about your pancreatitis- been there, done that- owwwwww.

After years of having crappy/no GI, I finally have a good one, who is familiar with cf <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Yep, get your gallbladder checked <b>AND your common bile duct</b>(also for sludge, not just stones), get checked for H. pylori -I had that, just gave me stomach aches, etc., but no ulcers- treated it, and I think I have had 2 stomach aches in 2 years. You might want to ask about taking a few enzymes too. They are supposed to help, by taking some of the load off your pancreas, even if you are overweight- I take 1-2 Viokase16's with greasy meals. (I am also a member of the "unusually plump" cfers' club <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). My grandmother (no cf) had chronic bouts of pancreatitis, and took enzymes with meals to help keep it under control.

I haven't had an attack in almost 4 years now(thankfully!), though I do still get occasional pains from bile stones in my bile duct from my liver issues (which is why I say have them check the common bile duct- crap in there can back up both your pancreas and your liver). Good luck.

 

[AnD]

I'm so sorry about your pancreatitis- been there, done that- owwwwww.

After years of having crappy/no GI, I finally have a good one, who is familiar with cf <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Yep, get your gallbladder checked <b>AND your common bile duct</b>(also for sludge, not just stones), get checked for H. pylori -I had that, just gave me stomach aches, etc., but no ulcers- treated it, and I think I have had 2 stomach aches in 2 years. You might want to ask about taking a few enzymes too. They are supposed to help, by taking some of the load off your pancreas, even if you are overweight- I take 1-2 Viokase16's with greasy meals. (I am also a member of the "unusually plump" cfers' club <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). My grandmother (no cf) had chronic bouts of pancreatitis, and took enzymes with meals to help keep it under control.

I haven't had an attack in almost 4 years now(thankfully!), though I do still get occasional pains from bile stones in my bile duct from my liver issues (which is why I say have them check the common bile duct- crap in there can back up both your pancreas and your liver). Good luck.

 

[AnD]

I'm so sorry about your pancreatitis- been there, done that- owwwwww.

After years of having crappy/no GI, I finally have a good one, who is familiar with cf <img src="i/expressions/face-icon-small-smile.gif" border="0"> .

Yep, get your gallbladder checked <b>AND your common bile duct</b>(also for sludge, not just stones), get checked for H. pylori -I had that, just gave me stomach aches, etc., but no ulcers- treated it, and I think I have had 2 stomach aches in 2 years. You might want to ask about taking a few enzymes too. They are supposed to help, by taking some of the load off your pancreas, even if you are overweight- I take 1-2 Viokase16's with greasy meals. (I am also a member of the "unusually plump" cfers' club <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). My grandmother (no cf) had chronic bouts of pancreatitis, and took enzymes with meals to help keep it under control.

I haven't had an attack in almost 4 years now(thankfully!), though I do still get occasional pains from bile stones in my bile duct from my liver issues (which is why I say have them check the common bile duct- crap in there can back up both your pancreas and your liver). Good luck.

 

[AnD]

I'm so sorry about your pancreatitis- been there, done that- owwwwww.
<br />
<br />After years of having crappy/no GI, I finally have a good one, who is familiar with cf <img src="i/expressions/face-icon-small-smile.gif" border="0"> .
<br />
<br />Yep, get your gallbladder checked <b>AND your common bile duct</b>(also for sludge, not just stones), get checked for H. pylori -I had that, just gave me stomach aches, etc., but no ulcers- treated it, and I think I have had 2 stomach aches in 2 years. You might want to ask about taking a few enzymes too. They are supposed to help, by taking some of the load off your pancreas, even if you are overweight- I take 1-2 Viokase16's with greasy meals. (I am also a member of the "unusually plump" cfers' club <img src="i/expressions/face-icon-small-wink.gif" border="0"> ). My grandmother (no cf) had chronic bouts of pancreatitis, and took enzymes with meals to help keep it under control.
<br />
<br />I haven't had an attack in almost 4 years now(thankfully!), though I do still get occasional pains from bile stones in my bile duct from my liver issues (which is why I say have them check the common bile duct- crap in there can back up both your pancreas and your liver). Good luck.