Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 Thanks so much for your reply Fliss (I love the name BTW!!) Yes, I'm gradually getting the feeling that this may be the way life just is for awhile at least or forever who knows? The docs actually DID say diagnosis was pancreatitis, but didn't necessarily DEFINE it in any way other than that. But, I s'pose that at this point no-one could really diagnose it COMPLETELY until more tests are done, symptoms continue or NOT. I can see how that would be the logical approach by a doc to this....I got on the scale today and all of sudden had lost 8 lbs (in less than 2 weeks). On the diet I'd been on, I had basically leveled off and was maintaining about a 10 lb weight loss since last August. So, that's kind of worrisome.....should I tell GI doc about it? Or just wait until scheduled MRCP next Wednesday? Is it significant enough to be of note? I suppose it is.....but can probably wait. Today (and this is seemingly developing a pattern of one day on (feeling ok) and then one day off) I'm having that burning, nagging pain and nausea. Thanks so much for your reply....and I am so glad I found this site w/links, etc. > Hello , > You asked about CP sufferers and work. (I realise that you may not > have CP although you have your suspicions?) My relatively short > experience (9 months) of being in touch with people who have > pancreatitis is that there is no consistent pattern. Some people > simply have too much pain and other unpleasant symptoms to be able > to work. Others seem to get by with much less disruption to their > lives. The disease goes through different stages too. Mine is > hereditary pancreatitis. I had my first attack at the age of five > and am now 58 (next Tuesday!) As a child I appeared totally healthy > apart from one or two vicious attacks each year, each one lasting > 6/7 days. Nobody made any connection with pancreatitis even when my > mother became ill with the disease in her 30's. My pattern continued > with little change until I was about forty. I lived a totally normal > life, eating and drinking just what I wanted, had two children and a > demanding job as a teacher and head of department in a large > secondary school. Then I began to get different symptoms with my > attacks....awful steatorrhoea and prolonged attacks of upper AND > lower abdominal pain as well as weight loss. In the end I nearly > resigned. In 1988 an ERCP and CT scan were inconclusive and finally > a diagnosis of coeliac disease was made, probably incorrectly. It > looks now as though the improvement which followed that diagnosis > may well have been less the elimination of gluten in my diet > (coeliac diet) than the fact that pastry, bread, cakes, sauces etc. > which contain gluten also tended to have a high fat content. I also > eliminated lactose as some coeliacs have difficulty in digesting it. > Of course that automatically eliminated cheese, my favourite food, > which cut down fat as well. Throughout the 1990's I was much better, > although never completely free of problems. I went on even to get a > promotion to deputy head. I could not have dreamt of that in the > 1980's. Then in 2000 my attacks of upper abdominal pain returned, > coming very frequently and without any particular pattern. My > diagnosis finally came last May following another CT scan, this time > showing very extensive damage to the pancreas. Last October I again > thought of resignation and had to leave school one day as the pain > was unbearable. Since then I have had a pretty good spell with a lot > of pain-free days and fewer painful ones and the pain seems less > severe. I have been putting this down to Creon (enzymes). However, > this could just be a fluke as I have had good spells in the past. > This week has not been good, in fact. At my age now, I could easily > retire if I wished but I would prefer to do one more year as I had > always planned. I love my job. However, if I do retire there will be > obvious advantages. I know I am going to be diabetic very soon, for > one thing. For another, I would not have to worry, if retired, about > those bad days when I find it hard to concentrate on my work. We are > fortunate as teachers in that we are allowed up to six months on > full pay if we are ill and then another six on half pay. Schools > have insurance to cover the cost of supply teachers although you > wouldn't be able to get a supply deputy head! I am particularly > lucky in having a superb head who would put me under no pressure > either to resign on grounds of ill health (in which case I would not > be allowed to work in schools again) or to come into school if ill. > On the other hand, I would not leave him in a position where he was > unable to advertise my post for months and months so I would not > take my full entitlement of sick leave. I would simply take early > retirement. Then, if I wished and was well enough, I could do a > whole range of jobs afterwards in education, whether in schools or > consultancy work etc. > > So, all in all, I can say that, despite the horrors of 1986-88 and > the very bad year 2002-2003, I have been very lucky in being able to > lead a " normal " life. Others find that things work out very > differently. I'm afraid a lot of people are " robbed " of their normal > routines, jobs they love and/or need and are very restricted indeed > in their daily lives. Some people I know have less pain than I do. > I'm only saying all this to show that patterns do vary. > > I hope, , that you will be one of those able to return to work. > Hopefully, you will recover from this attack and have long pain- free > times ahead. It certainly seemed from your blood tests that they > were exploring the possibility of acute pancreatitis. > With very good wishes, > Fliss Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 13, 2004 Report Share Posted February 13, 2004 I couldn't help but over hear you and Fliss,,*S* and I just love her name too, wouldn't you think her to be just adorable! She is a wonderful person, and I hope London can recover from a week of her and Jim covorting to all hours...LOL My weight has been like you in that 10 lb, up or down range. But a loss of 8 pound 2 weeks is a bit much. I dont think it is something you should alert the doc of right away, but definetly worth noting. Alot of people on here keep journals; writing what they eat, activities, weight, nausea, ect to look for different triggers. I did that for a while few years ago and it did help me to eliminate certain triggers ie: the after school line to pick up my kids, hate that line. So sometimes finding out what can be stressful to the panc can help a lot. I swing by the store, or get gas before I pick up the kids, since I know the line irritates me so much. Also I found that when I start running a low temp I am heading for a bad spell, so I would pay closer attention to what I ate or did. Do you stil have your gallbladder? Has anyone in your family ever had pancreatitis? You may have already told all of that and I apoligize for asking again. Think about the journal, it wont take long for you to see correlations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Hi , I see you've been asking about CP and work. As Fliss said, it is very individual, and depends on the frequency and severity of your symptoms, and how you're able to manage these. I'm a qualified nurse, and i work with sick children. I have CP and have had a total pancreatectomy. I work 30 hours / week, which is shifts, including nights. I have had quite a bit of time of sick over the years. When i applied for promotion i was turned down on two occasions, despite having more qualifications and experience than the other applicants. In the third occasion i involved the nursing union, and they said i would have a case for unfair treatment if i was unsuccessful again. Fortunately, i was successful. I do still have occasions wheh i have time off sick, although things are much better than they were before i had my surgery. I think it is a good idea to keep a record of any work related issues which you feel could affect the future of your job. Best wishes, Sue (UK). > Message date : Feb 13 2004, 08:50 PM > From : " she_remembers " > To : pancreatitis > Copy to : > Subject : Re: Working () > Thanks so much for your reply Fliss (I love the name BTW!!) Yes, I'm > gradually getting the feeling that this may be the way life just is > for awhile at least or forever who knows? The docs actually DID say > diagnosis was pancreatitis, but didn't necessarily DEFINE it in any > way other than that. But, I s'pose that at this point no-one could > really diagnose it COMPLETELY until more tests are done, symptoms > continue or NOT. I can see how that would be the logical approach by > a doc to this....I got on the scale today and all of sudden had lost > 8 lbs (in less than 2 weeks). On the diet I'd been on, I had > basically leveled off and was maintaining about a 10 lb weight loss > since last August. So, that's kind of worrisome.....should I tell GI > doc about it? Or just wait until scheduled MRCP next Wednesday? Is > it significant enough to be of note? I suppose it is.....but can > probably wait. Today (and this is seemingly developing a pattern of > one day on (feeling ok) and then one day off) I'm having that > burning, nagging pain and nausea. > > Thanks so much for your reply....and I am so glad I found this site > w/links, etc. > > > > > > Hello , > > You asked about CP sufferers and work. (I realise that you may not > > have CP although you have your suspicions?) My relatively short > > experience (9 months) of being in touch with people who have > > pancreatitis is that there is no consistent pattern. Some people > > simply have too much pain and other unpleasant symptoms to be able > > to work. Others seem to get by with much less disruption to their > > lives. The disease goes through different stages too. Mine is > > hereditary pancreatitis. I had my first attack at the age of five > > and am now 58 (next Tuesday!) As a child I appeared totally healthy > > apart from one or two vicious attacks each year, each one lasting > > 6/7 days. Nobody made any connection with pancreatitis even when my > > mother became ill with the disease in her 30's. My pattern > continued > > with little change until I was about forty. I lived a totally > normal > > life, eating and drinking just what I wanted, had two children and > a > > demanding job as a teacher and head of department in a large > > secondary school. Then I began to get different symptoms with my > > attacks....awful steatorrhoea and prolonged attacks of upper AND > > lower abdominal pain as well as weight loss. In the end I nearly > > resigned. In 1988 an ERCP and CT scan were inconclusive and finally > > a diagnosis of coeliac disease was made, probably incorrectly. It > > looks now as though the improvement which followed that diagnosis > > may well have been less the elimination of gluten in my diet > > (coeliac diet) than the fact that pastry, bread, cakes, sauces etc. > > which contain gluten also tended to have a high fat content. I also > > eliminated lactose as some coeliacs have difficulty in digesting > it. > > Of course that automatically eliminated cheese, my favourite food, > > which cut down fat as well. Throughout the 1990's I was much > better, > > although never completely free of problems. I went on even to get a > > promotion to deputy head. I could not have dreamt of that in the > > 1980's. Then in 2000 my attacks of upper abdominal pain returned, > > coming very frequently and without any particular pattern. My > > diagnosis finally came last May following another CT scan, this > time > > showing very extensive damage to the pancreas. Last October I again > > thought of resignation and had to leave school one day as the pain > > was unbearable. Since then I have had a pretty good spell with a > lot > > of pain-free days and fewer painful ones and the pain seems less > > severe. I have been putting this down to Creon (enzymes). However, > > this could just be a fluke as I have had good spells in the past. > > This week has not been good, in fact. At my age now, I could easily > > retire if I wished but I would prefer to do one more year as I had > > always planned. I love my job. However, if I do retire there will > be > > obvious advantages. I know I am going to be diabetic very soon, for > > one thing. For another, I would not have to worry, if retired, > about > > those bad days when I find it hard to concentrate on my work. We > are > > fortunate as teachers in that we are allowed up to six months on > > full pay if we are ill and then another six on half pay. Schools > > have insurance to cover the cost of supply teachers although you > > wouldn't be able to get a supply deputy head! I am particularly > > lucky in having a superb head who would put me under no pressure > > either to resign on grounds of ill health (in which case I would > not > > be allowed to work in schools again) or to come into school if ill. > > On the other hand, I would not leave him in a position where he was > > unable to advertise my post for months and months so I would not > > take my full entitlement of sick leave. I would simply take early > > retirement. Then, if I wished and was well enough, I could do a > > whole range of jobs afterwards in education, whether in schools or > > consultancy work etc. > > > > So, all in all, I can say that, despite the horrors of 1986-88 and > > the very bad year 2002-2003, I have been very lucky in being able > to > > lead a " normal " life. Others find that things work out very > > differently. I'm afraid a lot of people are " robbed " of their > normal > > routines, jobs they love and/or need and are very restricted indeed > > in their daily lives. Some people I know have less pain than I do. > > I'm only saying all this to show that patterns do vary. > > > > I hope, , that you will be one of those able to return to > work. > > Hopefully, you will recover from this attack and have long pain- > free > > times ahead. It certainly seemed from your blood tests that they > > were exploring the possibility of acute pancreatitis. > > With very good wishes, > > Fliss > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 Thanks for the reply, as always, I appreciate it!! It's encouraging to see that since the TP you are basically back to a normal life!! Hope it won't be that drastic for me; I just get nervous because when I'm feeling really bad (like yesterday) I said to my husband that it would be impossible to work feeling like this and yet I may have to at some point when my leave has run out. I don't know how soon I can even return to work. I was hoping that I could go back this next Tuesday as Monday is the President's Day holiday, but again, will have to play by ear. Wednesday is my MRCP, so maybe I'll just stay home thru Wednesday and " attempt " to go back on a Thursday and see how I fare for 2 days. Yes, I also agree, that I need to document EVERYTHING in case there is ever a problem but I work for the government and they would have to do alot of jumping thru hoops to actually get me fired.....however, as I've seen just by being out so much in the past 3 months or so, you DEFINITELY get the sort of " cold shoulder " attitude. At least now though there is something to attribute this to instead of calling in to work, talking to the secretary and saying that I'm out AGAIN with the flu...... Thanks for your response > > > Hello , > > > You asked about CP sufferers and work. (I realise that you may not > > > have CP although you have your suspicions?) My relatively short > > > experience (9 months) of being in touch with people who have > > > pancreatitis is that there is no consistent pattern. Some people > > > simply have too much pain and other unpleasant symptoms to be able > > > to work. Others seem to get by with much less disruption to their > > > lives. The disease goes through different stages too. Mine is > > > hereditary pancreatitis. I had my first attack at the age of five > > > and am now 58 (next Tuesday!) As a child I appeared totally healthy > > > apart from one or two vicious attacks each year, each one lasting > > > 6/7 days. Nobody made any connection with pancreatitis even when my > > > mother became ill with the disease in her 30's. My pattern > > continued > > > with little change until I was about forty. I lived a totally > > normal > > > life, eating and drinking just what I wanted, had two children and > > a > > > demanding job as a teacher and head of department in a large > > > secondary school. Then I began to get different symptoms with my > > > attacks....awful steatorrhoea and prolonged attacks of upper AND > > > lower abdominal pain as well as weight loss. In the end I nearly > > > resigned. In 1988 an ERCP and CT scan were inconclusive and finally > > > a diagnosis of coeliac disease was made, probably incorrectly. It > > > looks now as though the improvement which followed that diagnosis > > > may well have been less the elimination of gluten in my diet > > > (coeliac diet) than the fact that pastry, bread, cakes, sauces etc. > > > which contain gluten also tended to have a high fat content. I also > > > eliminated lactose as some coeliacs have difficulty in digesting > > it. > > > Of course that automatically eliminated cheese, my favourite food, > > > which cut down fat as well. Throughout the 1990's I was much > > better, > > > although never completely free of problems. I went on even to get a > > > promotion to deputy head. I could not have dreamt of that in the > > > 1980's. Then in 2000 my attacks of upper abdominal pain returned, > > > coming very frequently and without any particular pattern. My > > > diagnosis finally came last May following another CT scan, this > > time > > > showing very extensive damage to the pancreas. Last October I again > > > thought of resignation and had to leave school one day as the pain > > > was unbearable. Since then I have had a pretty good spell with a > > lot > > > of pain-free days and fewer painful ones and the pain seems less > > > severe. I have been putting this down to Creon (enzymes). However, > > > this could just be a fluke as I have had good spells in the past. > > > This week has not been good, in fact. At my age now, I could easily > > > retire if I wished but I would prefer to do one more year as I had > > > always planned. I love my job. However, if I do retire there will > > be > > > obvious advantages. I know I am going to be diabetic very soon, for > > > one thing. For another, I would not have to worry, if retired, > > about > > > those bad days when I find it hard to concentrate on my work. We > > are > > > fortunate as teachers in that we are allowed up to six months on > > > full pay if we are ill and then another six on half pay. Schools > > > have insurance to cover the cost of supply teachers although you > > > wouldn't be able to get a supply deputy head! I am particularly > > > lucky in having a superb head who would put me under no pressure > > > either to resign on grounds of ill health (in which case I would > > not > > > be allowed to work in schools again) or to come into school if ill. > > > On the other hand, I would not leave him in a position where he was > > > unable to advertise my post for months and months so I would not > > > take my full entitlement of sick leave. I would simply take early > > > retirement. Then, if I wished and was well enough, I could do a > > > whole range of jobs afterwards in education, whether in schools or > > > consultancy work etc. > > > > > > So, all in all, I can say that, despite the horrors of 1986-88 and > > > the very bad year 2002-2003, I have been very lucky in being able > > to > > > lead a " normal " life. Others find that things work out very > > > differently. I'm afraid a lot of people are " robbed " of their > > normal > > > routines, jobs they love and/or need and are very restricted indeed > > > in their daily lives. Some people I know have less pain than I do. > > > I'm only saying all this to show that patterns do vary. > > > > > > I hope, , that you will be one of those able to return to > > work. > > > Hopefully, you will recover from this attack and have long pain- > > free > > > times ahead. It certainly seemed from your blood tests that they > > > were exploring the possibility of acute pancreatitis. > > > With very good wishes, > > > Fliss > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2004 Report Share Posted February 14, 2004 P.S. I ALSO wanted to add though that even though I sort of have a diagnosis.......I know the way people are at my work and as soon as they see I'm back, they'll think everything is just hunky dory again and put me back to a full " case load. " I'm going to have to explain to people that this is the kind of thing where one day you feel sort of normal and the next you're awful I guess......this is AWFUL!!!! > > > Hello , > > > You asked about CP sufferers and work. (I realise that you may not > > > have CP although you have your suspicions?) My relatively short > > > experience (9 months) of being in touch with people who have > > > pancreatitis is that there is no consistent pattern. Some people > > > simply have too much pain and other unpleasant symptoms to be able > > > to work. Others seem to get by with much less disruption to their > > > lives. The disease goes through different stages too. Mine is > > > hereditary pancreatitis. I had my first attack at the age of five > > > and am now 58 (next Tuesday!) As a child I appeared totally healthy > > > apart from one or two vicious attacks each year, each one lasting > > > 6/7 days. Nobody made any connection with pancreatitis even when my > > > mother became ill with the disease in her 30's. My pattern > > continued > > > with little change until I was about forty. I lived a totally > > normal > > > life, eating and drinking just what I wanted, had two children and > > a > > > demanding job as a teacher and head of department in a large > > > secondary school. Then I began to get different symptoms with my > > > attacks....awful steatorrhoea and prolonged attacks of upper AND > > > lower abdominal pain as well as weight loss. In the end I nearly > > > resigned. In 1988 an ERCP and CT scan were inconclusive and finally > > > a diagnosis of coeliac disease was made, probably incorrectly. It > > > looks now as though the improvement which followed that diagnosis > > > may well have been less the elimination of gluten in my diet > > > (coeliac diet) than the fact that pastry, bread, cakes, sauces etc. > > > which contain gluten also tended to have a high fat content. I also > > > eliminated lactose as some coeliacs have difficulty in digesting > > it. > > > Of course that automatically eliminated cheese, my favourite food, > > > which cut down fat as well. Throughout the 1990's I was much > > better, > > > although never completely free of problems. I went on even to get a > > > promotion to deputy head. I could not have dreamt of that in the > > > 1980's. Then in 2000 my attacks of upper abdominal pain returned, > > > coming very frequently and without any particular pattern. My > > > diagnosis finally came last May following another CT scan, this > > time > > > showing very extensive damage to the pancreas. Last October I again > > > thought of resignation and had to leave school one day as the pain > > > was unbearable. Since then I have had a pretty good spell with a > > lot > > > of pain-free days and fewer painful ones and the pain seems less > > > severe. I have been putting this down to Creon (enzymes). However, > > > this could just be a fluke as I have had good spells in the past. > > > This week has not been good, in fact. At my age now, I could easily > > > retire if I wished but I would prefer to do one more year as I had > > > always planned. I love my job. However, if I do retire there will > > be > > > obvious advantages. I know I am going to be diabetic very soon, for > > > one thing. For another, I would not have to worry, if retired, > > about > > > those bad days when I find it hard to concentrate on my work. We > > are > > > fortunate as teachers in that we are allowed up to six months on > > > full pay if we are ill and then another six on half pay. Schools > > > have insurance to cover the cost of supply teachers although you > > > wouldn't be able to get a supply deputy head! I am particularly > > > lucky in having a superb head who would put me under no pressure > > > either to resign on grounds of ill health (in which case I would > > not > > > be allowed to work in schools again) or to come into school if ill. > > > On the other hand, I would not leave him in a position where he was > > > unable to advertise my post for months and months so I would not > > > take my full entitlement of sick leave. I would simply take early > > > retirement. Then, if I wished and was well enough, I could do a > > > whole range of jobs afterwards in education, whether in schools or > > > consultancy work etc. > > > > > > So, all in all, I can say that, despite the horrors of 1986-88 and > > > the very bad year 2002-2003, I have been very lucky in being able > > to > > > lead a " normal " life. Others find that things work out very > > > differently. I'm afraid a lot of people are " robbed " of their > > normal > > > routines, jobs they love and/or need and are very restricted indeed > > > in their daily lives. Some people I know have less pain than I do. > > > I'm only saying all this to show that patterns do vary. > > > > > > I hope, , that you will be one of those able to return to > > work. > > > Hopefully, you will recover from this attack and have long pain- > > free > > > times ahead. It certainly seemed from your blood tests that they > > > were exploring the possibility of acute pancreatitis. > > > With very good wishes, > > > Fliss > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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