Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 > Fred, > > You wrote, " We live outside Phoenix, AZ. In 2001, she had major surgery to > open up the pancreatic ducts.... I keep a journal of her flare-ups and lately > they are becoming more and more frequent ... she takes Vicodan ... feels > bloated, uncomfortable, and gassy. ... She will not go to hospital as all's they > do is give her pain meds and IV fluids. " > > 1. Again, welcome, glad to see you post an intro note to let us know > what's going on. I was curious what the name of the pancreatic surgery she had and > where she had it? > > 2. That is great that you have been keeping a journal. The PAI encourages > people to do this for numerous reasons. First, time can slip away and before > you know it you can't remember what happened or when. My journal even records > my appetite, nausea, and bowel and bladder elimination. People may laugh, but I > look before I flush. What you see can be significant information to know > what's going on. If there is an Exxon Oil Spill, I know I need more enzymes. It > also allows me to have an intelligent discussion with my healthcare providers. > When they ask a question, I can answer succinctly, instead of Well? Uh? Hmm? > For women, most of us who are still menstruating are extremely irregular, and > that is the first question the nurse asks, beats me, if I don't record it. > Trends are important. It is often the patient and family that will identify when > early onset of a problem. When these logs are looked at carefully, often the > thing that caused a change usually happened a day or two earlier than the > symptoms. > > 3. Most people who takes narcotic have the expected side effect of > uncomfortable bloating. It is caused when the bowel takes a rest along with the pain. > They all shut down. The PAI makes no medication recommendations. What works > for me is a medication my doctor orders called Miralax, a clear, tasteless > powder that I take at bedtime when I see things slowing down. It isn't like any > over the counter stuff, like Maalox, or MOM. It doesn't get hard. It dissolves > in any fluid. And it works with no known side effects. No cramping. It will > help postpone long term problems from narcotic usage called Mega Bowel, but > keeping them regular. > > 4. The gassy feeling you commented on, may be like other people with > Pancreatitis. It isn't caused from the narcotic, per say, but coincides with it, > since she is taking Vicodan because of an attack causing pain, necessitating the > increased narcotic. It is the malabsorption that is occurring during this > attack that is not allowing for proper fat metabolism, and it therefore builds up > in the bowel. Additionally, because there may be low enzymes contacting her > food, the food she eats is not going through normal digestion. Combined with > the slow down in bowel motility, the food often becomes somewhat of a " human " > compost, producing it's on aerobic bacteria, which produces gas and bloating. > (Oh, the miseries of this disease.) My doctor prescribes enzymes for me to take > on a regular basis. There are two main brand name and several generics. It is > 6 of one a half a dozen of another of which would work for one vs another. I > take Creon Brand name capsules. > > 5. There are many, many, many over the counter enzyme preparations > available in health food stores. Though I also am on a comprehensive complimentary > vitamin / mineral / herbal / amino acid program, I never take anything that my > healthcare team is not aware of. There are known side effects even with > " natural " products. For myself, the Creon enzyme preparation has the balance of > lactase, amylase, and protease that I need. > > 6. Most of us have the same opinion about hospital care we expect when we > go, IVF and pain med. The key ingredient for most is the IVF. Dehydration can > exacerbate an acute attack of Pancreatitis or prolonged the attack. > Maintaining adequate hydration is very important. I often have a lot of nausea, though > it cycles. My doctor prescribes Zofran Liquid which works like magic in > minutes. The Zofran tablets do not work. I don't absorb tablets well. Phenergan does > nothing. Everybody responds differently to every medication. That is why we > can't give advice or direction re: specific medication or treatment. > > 7. I hope through your association with the PAI you can get the support, > education, advocacy, and with your health care provider develop a Pancreatitis > Management Program. Crisis management does not work. I have a 'good day' care > plan and a 'down day' care plan, and the tools and therapeutics to deal with > whatever I wake up with. This takes time to develop. And, when you think you > finally have it down, this disease throws you a loop hole. > > 8. Our goal is to empower you to make informed healthcare decisions. For > more information, please visit the PAI Top5Plus5 Incredible Library of > Information. Our Northwest Regional Representative is the webmaster for this. We > applaud his efforts to keep plowing through cyber space finding answers to any > questions we have. > > > Karyn E. , RN > Executive Director, PAI > http://www.pancassociation.org > Pancreatitis Association International > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Dear Fred, I hope I'm remembering this right (anyone reading this, please correct me if I'm wrong)..I'm reffering to the stones that they don't know where they're coming from. A l-o-n-g time ago, my doc did a test on the composition of the bile. If I remember right, he did an ERCP to get a sample. Karyn or Mark Armstrong would be someone to ask about that. It's been so long, & I was so sick, that I don't recall everything about that time in my life. I'm just beating my brain trying to think of what can help. Again, ask Karyn or Mark. (I hope this post made sense.) Hugs, Deanna > > Fred, > > > > You wrote, " We live outside Phoenix, AZ. In 2001, she had major > surgery to > > open up the pancreatic ducts.... I keep a journal of her flare- ups > and lately > > they are becoming more and more frequent ... she takes > Vicodan ... feels > > bloated, uncomfortable, and gassy. ... She will not go to hospital > as all's they > > do is give her pain meds and IV fluids. " > > > > 1. Again, welcome, glad to see you post an intro note to let us > know > > what's going on. I was curious what the name of the pancreatic > surgery she had and > > where she had it? > > > > 2. That is great that you have been keeping a journal. The PAI > encourages > > people to do this for numerous reasons. First, time can slip away > and before > > you know it you can't remember what happened or when. My journal > even records > > my appetite, nausea, and bowel and bladder elimination. People may > laugh, but I > > look before I flush. What you see can be significant information > to know > > what's going on. If there is an Exxon Oil Spill, I know I need > more enzymes. It > > also allows me to have an intelligent discussion with my > healthcare providers. > > When they ask a question, I can answer succinctly, instead of > Well? Uh? Hmm? > > For women, most of us who are still menstruating are extremely > irregular, and > > that is the first question the nurse asks, beats me, if I don't > record it. > > Trends are important. It is often the patient and family that will > identify when > > early onset of a problem. When these logs are looked at carefully, > often the > > thing that caused a change usually happened a day or two earlier > than the > > symptoms. > > > > 3. Most people who takes narcotic have the expected side effect > of > > uncomfortable bloating. It is caused when the bowel takes a rest > along with the pain. > > They all shut down. The PAI makes no medication recommendations. > What works > > for me is a medication my doctor orders called Miralax, a clear, > tasteless > > powder that I take at bedtime when I see things slowing down. It > isn't like any > > over the counter stuff, like Maalox, or MOM. It doesn't get hard. > It dissolves > > in any fluid. And it works with no known side effects. No > cramping. It will > > help postpone long term problems from narcotic usage called Mega > Bowel, but > > keeping them regular. > > > > 4. The gassy feeling you commented on, may be like other people > with > > Pancreatitis. It isn't caused from the narcotic, per say, but > coincides with it, > > since she is taking Vicodan because of an attack causing pain, > necessitating the > > increased narcotic. It is the malabsorption that is occurring > during this > > attack that is not allowing for proper fat metabolism, and it > therefore builds up > > in the bowel. Additionally, because there may be low enzymes > contacting her > > food, the food she eats is not going through normal digestion. > Combined with > > the slow down in bowel motility, the food often becomes somewhat > of a " human " > > compost, producing it's on aerobic bacteria, which produces gas > and bloating. > > (Oh, the miseries of this disease.) My doctor prescribes enzymes > for me to take > > on a regular basis. There are two main brand name and several > generics. It is > > 6 of one a half a dozen of another of which would work for one vs > another. I > > take Creon Brand name capsules. > > > > 5. There are many, many, many over the counter enzyme > preparations > > available in health food stores. Though I also am on a > comprehensive complimentary > > vitamin / mineral / herbal / amino acid program, I never take > anything that my > > healthcare team is not aware of. There are known side effects even > with > > " natural " products. For myself, the Creon enzyme preparation has > the balance of > > lactase, amylase, and protease that I need. > > > > 6. Most of us have the same opinion about hospital care we > expect when we > > go, IVF and pain med. The key ingredient for most is the IVF. > Dehydration can > > exacerbate an acute attack of Pancreatitis or prolonged the > attack. > > Maintaining adequate hydration is very important. I often have a > lot of nausea, though > > it cycles. My doctor prescribes Zofran Liquid which works like > magic in > > minutes. The Zofran tablets do not work. I don't absorb tablets > well. Phenergan does > > nothing. Everybody responds differently to every medication. That > is why we > > can't give advice or direction re: specific medication or > treatment. > > > > 7. I hope through your association with the PAI you can get the > support, > > education, advocacy, and with your health care provider develop a > Pancreatitis > > Management Program. Crisis management does not work. I have > a 'good day' care > > plan and a 'down day' care plan, and the tools and therapeutics to > deal with > > whatever I wake up with. This takes time to develop. And, when you > think you > > finally have it down, this disease throws you a loop hole. > > > > 8. Our goal is to empower you to make informed healthcare > decisions. For > > more information, please visit the PAI Top5Plus5 Incredible > Library of > > Information. Our Northwest Regional Representative is the > webmaster for this. We > > applaud his efforts to keep plowing through cyber space finding > answers to any > > questions we have. > > > > > > Karyn E. , RN > > Executive Director, PAI > > http://www.pancassociation.org > > Pancreatitis Association International > > > > > > Quote Link to comment Share on other sites More sharing options...
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