Today is August 15, 2007
I celebrated my 41st birthday on August 3, and it was great. Micheal took me out to eat ( first time for my birthday, EVER) we went to Texas Roadhouse. I love their grilled Salmon, rice, salad and dinner roll. Food is such a good thing now.
I still have some issues with my liver enzymes being real high. There are times it is pretty painful. It hurts more after eatting than any other time. All in all I feel so much better. I wished that I felt like I did before pancreatitis happened but there isn't a whole lot I can do about that.
In about 6 weeks it will be my first anniversary since my surgery. My family Dr. told me it would take a year to get over my tp/ict. At the time, I didn't want to hear it, but it is true. I had a few set backs along the way, and they were quite painful, but it is becoming more and more clear with each passing month, how much better I am.
I recently came off the duragesic patch. Oh, I almost forgot I went and signed up for school last Friday. College begins next Monday, and the college purged my transcripts 8-01-07, so now I can't get into school in time. I am still going to pay for my transcripts again, the class I want to take starts again in October, which is fine with me. I would much rather enjoy my first summer ever and go back to school, with cold weather coming ( much better for me, I get to enjoy more of my summer) I planted some flowers this spring, and I will post a picture of one really pretty one. I have been doing some sewing this spring and summer. Not as much as I would like.
I have lost a few more pounds nothing drastic, my size is stable at a 4-6 alot smaller than before.
I almost forgot to tell everyone. Michael and I are going to be grandparents, in late January early February. I will post pics soon, I need to switch computers to do so.
Thanks to everyone for there support over the past year and months.
Lisa
Wednesday, August 15, 2007
Saturday, April 28, 2007
I have not posted on either board about my extreme weight loss. I have not spoken with any tp/ict patient that has had the extreme weight loss I have had. Since returning from MN, I have lost 35 lbs. Since the spring of 2005 I have lost a total of 60lbs. I know since I have returned from MN I have went from wearing a size 14 down to a size 4-6. In the spring of 2005 I wore a size 16-18 or XL occasionally a 1X in a womans shirt. Now I wear a x-small to a small. I have not tried to loose one pound. I eat what I want when I want it, and if my blood sugar goes up then I will cover it with sliding scale insulin administration. I have not wanted to loose this much weight, there are times I buy clothes hang them up and when I go back to get them they are too big. There are not huge time frames between the purchases and the attempting to wear usually no more than a week.
I have been placed on a vitamine supplement called ADEK's these are fat soluable vitamins. For some reason my vitamin D levels was low and for me to take a D supplement with calcium like oscal, these pills are huge, so I am taking a chewable childrens multivitamin. I am going to start buying my summer stuff in the boys section.
I still feel pretty bad, and the pain is still there and the fatique is making me so very tired. I believe I am starting to get depressed, it has been 7 months since my surgery, I am still waiting to be better.
I have been placed on a vitamine supplement called ADEK's these are fat soluable vitamins. For some reason my vitamin D levels was low and for me to take a D supplement with calcium like oscal, these pills are huge, so I am taking a chewable childrens multivitamin. I am going to start buying my summer stuff in the boys section.
I still feel pretty bad, and the pain is still there and the fatique is making me so very tired. I believe I am starting to get depressed, it has been 7 months since my surgery, I am still waiting to be better.
Friday, April 27, 2007
Friday April 27,2007
I haven't posted lately because I was in the hospital. I haven't been feeling well. I actually have never really gotten over having my surgery. I was hospitalized in November with an ileus. I am not sure if the ileus was diagnosed by history or if it was seen on xray. This time I was hospitalized with ..... Hepatitis. The actual medical term hepatitis, means inflammation of the liver. I had been referred to a local G.I Dr. a few weeks ago, as I said this is not the first time I have had problem with this. The pain is the same each time and this has happened at least 5 times. When I saw the local G.I he basically blew me off, told me that he would follow my elevated liver enzymes and "chronic constipation". Seems when ever I have my problem I can't go to the bathroom. It would be easy to make fun of my honesty about all of this. But I blog for others not for myself, for those with pancreatitis to have available to them a resource of information to make their own decision(s). Not some medical article that makes no sense to the layperson. To follow someone else's life and see what positive or negative results have occurred. So I have opened myself up to the mundane things of life that most people would not even discuss with their spouse. If this helps one person with pancreatitis, to find a life that they thought they would never have, then this willing invasion of private things will have been worth every word written.
I have made myself perfectly clear to my pcp, that this has occurred before and that it will happen again. For some reason this is a cyclic event. My liver enzymes have been elevated since I returned from MN. According to Dr.Sutherland they were also elevated prior to coming home, and after surgery. I have been told there are others with elevated liver enzymes but it doesn't seem to be a problem for them. I kept thinking that I was getting another ileus each time the symptoms would start. I guess I should tell what my symptoms are.... abdominal pain.. sharp and rt sided seems to me it hurts more after I eat. Extreme fatigue, I slept the whole time I was in the hospital. I could not stay awake more than 3 hours and I needed a nap. I have been feeling very tired lately. So tired that I have fallen asleep at the computer within the last 2-3 weeks. Back pain straight through where abdominal pain is felt and shoulder rt sided. Constipation.
The G.I Dr. feels that this is viral hepatitis, again this has been happening since I had surgery. Some reason he just doesn't want to listen to what I have to say. The only positive thing is my pcp listens to me, he really does. I never bother him for stupid stuff, I know when something is wrong.This he knows. I do feel better than I did, and hope that I never feel this again and it would be nice if it went away and it were just another bump in a road that is less than charted territory. Time will tell how this all turns out. I have had blood work done for blood borne diseases. The results of which are still out. For a few weeks I will be resting more, taking it easy and plainly vegging more.
I recieved a letter from MN asking me to participate in a study to basically look at insulin production in those with total pancreatectomy with auto islet. It appears that those on insulin will be hospitalized and given a sugary drink and an insulin drip will be initated. Frequent blood samples will be taken and the amount of insulin the person manufactures measured. I wou ld like to help them, but with my luck I would get to MN and have a problem. For our help they will pay $200.00 plus reimburse airfare. I hope there are some that are in better shape than I that can assist them.
I have made myself perfectly clear to my pcp, that this has occurred before and that it will happen again. For some reason this is a cyclic event. My liver enzymes have been elevated since I returned from MN. According to Dr.Sutherland they were also elevated prior to coming home, and after surgery. I have been told there are others with elevated liver enzymes but it doesn't seem to be a problem for them. I kept thinking that I was getting another ileus each time the symptoms would start. I guess I should tell what my symptoms are.... abdominal pain.. sharp and rt sided seems to me it hurts more after I eat. Extreme fatigue, I slept the whole time I was in the hospital. I could not stay awake more than 3 hours and I needed a nap. I have been feeling very tired lately. So tired that I have fallen asleep at the computer within the last 2-3 weeks. Back pain straight through where abdominal pain is felt and shoulder rt sided. Constipation.
The G.I Dr. feels that this is viral hepatitis, again this has been happening since I had surgery. Some reason he just doesn't want to listen to what I have to say. The only positive thing is my pcp listens to me, he really does. I never bother him for stupid stuff, I know when something is wrong.This he knows. I do feel better than I did, and hope that I never feel this again and it would be nice if it went away and it were just another bump in a road that is less than charted territory. Time will tell how this all turns out. I have had blood work done for blood borne diseases. The results of which are still out. For a few weeks I will be resting more, taking it easy and plainly vegging more.
I recieved a letter from MN asking me to participate in a study to basically look at insulin production in those with total pancreatectomy with auto islet. It appears that those on insulin will be hospitalized and given a sugary drink and an insulin drip will be initated. Frequent blood samples will be taken and the amount of insulin the person manufactures measured. I wou ld like to help them, but with my luck I would get to MN and have a problem. For our help they will pay $200.00 plus reimburse airfare. I hope there are some that are in better shape than I that can assist them.
Monday, April 16, 2007
April 16,2007
I attempted to post yesterday, but after 2 power failures I finally gave up. It was probably more than what anyone really wanted to hear anyway. The easy was to say what I was going to say was this. I had surgery when I was 18 to removed a bad gallbladder. When the surgery was performed I was found to have an annular pancreas. My annular pancreas was caused from the pancreas and duodenum not separating during fetal developement. My surgeon at the time was quite displeased with his findings and told my mother and grandmother " pray I have seen it once before and he is dead, some day this will have to be delt with". It was a terribly difficult open gallbladder surgery to wake up to. I woke up with acute pancreatitis from his attempts to
"fix" what he had found, but was unable to and put things back the way he " found" them. I managed to do pretty well after that surgery, about 2 monts after, my life was "normal". I went on to marry, go to nursing school, graduate from nursing school, divorce, remarry and then. One day I woke to my back aching terribly, I was working as a nurse and was used to the I lifted one to many patients back ache, this was nothing like that. I went to the Dr. and the Dr. thought it was muscle spasms and way it went like it came. I started dreaming of nausea, and would wake up in the morning to see that someone had been sick in the middle of the night.... yea me. I went and saw that surgeon who did my gallbladder surgery as he had instructed me " if you have difficulties with this, call me." Immediately he said " I can't help you"... " Can't you refer me to a gastroenterologist"? " There is no one around here that is prepared to deal with your situation". Which eventually led me to Indiana University Medical Centers G.I. Department. IU is thought to be one of the U.S foremost places for G.I. stuff. I had a ERCP and woke up to the terrible pain of acute pancreatitis again. I was kept on IV Demerol and Phenergan for a couple of days. I would wake up complain of pain, and be given more pain meds to sleep. After 4 days in the hospital it was then that I learned a stent had been placed into my common bile duct. I would be sent home within the next day as soon as I could tolerate clear liquids. IU Med Center is about 80 miles from my home. After coming home, I still had horrible pain, especially when I attempted to eat something. I went back to work the following week and tried to work my job, but the pain would get worse with activity. I evtually ended up in our local ER, my first ER visit with elevated pancreatic enzymes. I was given an injection of Demerol and sent home. I was given instructions to notify IU in the morning which I did and an appointment was made for me to return. My return visit, was another ERCP to remove the stent, I was made to believe that everything was fine. There was absolutely no reason why the stent should have caused such horrid pain, NONE. When I read the report of the procedure the stent had retrograded into the pancreas, funny I wasn't told of this. By now I had more diagnosis' to add to the annular pancreas; pancreas divisum, sphinter of oddi dysfunction. The no minor papilla diagnosis didn't come until Nov. 2005. I did well for about 2 months ... the date I remember all to well 1-27-1997 I woke up to the worst pain in the world, it was the first time I ever woke up screaming from pain.... it never went away until I woke up in MN after my pancreatectomy.
I spent over 9.5 years in the torment. I have had people ask me why didn't you have surgery before last year? I guess I thought that for some reason it would just go away the way it came.
Or I guess I hoped that it would. I had seen surgeons before they would say " lady I can take your pancreas out, but it won't stop the pain" I guess I thought, why go through such a huge surgery and still have pain". I had to do something last year, had to... We all know that feeling.. something has to be done. although I had searched for help before I had never sought Dr.Sutherland.
People ask me from time to time.... have you returned to work yet? The answer is no... everytime I feel like it might be a possiblity something happens. I do still have some pain.... it usually occurs in the evening when I am tired. I was so sick after almost 10 years of this disease, it may take me a while to get back what I have lost. I didn't get this sick over night and it will take more than a few months for me to get 100% if 100% is possible. I will try as hard as I can.
My life is better than it was. I no longer wake up to the sound of my own voice screaming every night. I know longer need the amount of pain medication that I once did to keep me comfortable. Today I was able to get up, eat and then shower. I haven't done this in almost 10 years. I would wake up screaming and crying take pain meds and sit and wait for them to take effect. Some days it would take up to 3 hours before I could even manage to get up and move around. I walked funny, my shoulders were humped forward and I was slouched over. My family knew not to speak to me for the first few hours I was up, not that I would be mad, but that the pain was all consuming. That type and intensity of pain is gone, that start out as a 10 and move up the scale kind of pain.
Well I am tired it has been a terribly busy day.
"fix" what he had found, but was unable to and put things back the way he " found" them. I managed to do pretty well after that surgery, about 2 monts after, my life was "normal". I went on to marry, go to nursing school, graduate from nursing school, divorce, remarry and then. One day I woke to my back aching terribly, I was working as a nurse and was used to the I lifted one to many patients back ache, this was nothing like that. I went to the Dr. and the Dr. thought it was muscle spasms and way it went like it came. I started dreaming of nausea, and would wake up in the morning to see that someone had been sick in the middle of the night.... yea me. I went and saw that surgeon who did my gallbladder surgery as he had instructed me " if you have difficulties with this, call me." Immediately he said " I can't help you"... " Can't you refer me to a gastroenterologist"? " There is no one around here that is prepared to deal with your situation". Which eventually led me to Indiana University Medical Centers G.I. Department. IU is thought to be one of the U.S foremost places for G.I. stuff. I had a ERCP and woke up to the terrible pain of acute pancreatitis again. I was kept on IV Demerol and Phenergan for a couple of days. I would wake up complain of pain, and be given more pain meds to sleep. After 4 days in the hospital it was then that I learned a stent had been placed into my common bile duct. I would be sent home within the next day as soon as I could tolerate clear liquids. IU Med Center is about 80 miles from my home. After coming home, I still had horrible pain, especially when I attempted to eat something. I went back to work the following week and tried to work my job, but the pain would get worse with activity. I evtually ended up in our local ER, my first ER visit with elevated pancreatic enzymes. I was given an injection of Demerol and sent home. I was given instructions to notify IU in the morning which I did and an appointment was made for me to return. My return visit, was another ERCP to remove the stent, I was made to believe that everything was fine. There was absolutely no reason why the stent should have caused such horrid pain, NONE. When I read the report of the procedure the stent had retrograded into the pancreas, funny I wasn't told of this. By now I had more diagnosis' to add to the annular pancreas; pancreas divisum, sphinter of oddi dysfunction. The no minor papilla diagnosis didn't come until Nov. 2005. I did well for about 2 months ... the date I remember all to well 1-27-1997 I woke up to the worst pain in the world, it was the first time I ever woke up screaming from pain.... it never went away until I woke up in MN after my pancreatectomy.
I spent over 9.5 years in the torment. I have had people ask me why didn't you have surgery before last year? I guess I thought that for some reason it would just go away the way it came.
Or I guess I hoped that it would. I had seen surgeons before they would say " lady I can take your pancreas out, but it won't stop the pain" I guess I thought, why go through such a huge surgery and still have pain". I had to do something last year, had to... We all know that feeling.. something has to be done. although I had searched for help before I had never sought Dr.Sutherland.
People ask me from time to time.... have you returned to work yet? The answer is no... everytime I feel like it might be a possiblity something happens. I do still have some pain.... it usually occurs in the evening when I am tired. I was so sick after almost 10 years of this disease, it may take me a while to get back what I have lost. I didn't get this sick over night and it will take more than a few months for me to get 100% if 100% is possible. I will try as hard as I can.
My life is better than it was. I no longer wake up to the sound of my own voice screaming every night. I know longer need the amount of pain medication that I once did to keep me comfortable. Today I was able to get up, eat and then shower. I haven't done this in almost 10 years. I would wake up screaming and crying take pain meds and sit and wait for them to take effect. Some days it would take up to 3 hours before I could even manage to get up and move around. I walked funny, my shoulders were humped forward and I was slouched over. My family knew not to speak to me for the first few hours I was up, not that I would be mad, but that the pain was all consuming. That type and intensity of pain is gone, that start out as a 10 and move up the scale kind of pain.
Well I am tired it has been a terribly busy day.
Thursday, April 12, 2007
Today is April 12,2007
Hello world, it is me again. Couldn't stop the Blogging. It was a necessary thing to stop mypancreatitisjourney as my pancreatitis journey was over. Now onto life without a pancreas, although I have actually been living a life without pancreatitis for over 6 months now.
It is amazing how many people find the blog. When I see a person is about to embark on that less than traveled road I send them an email with the link and say " read it and email me any questions that you have". I have met some awesome people in their search for a less painful life.
It is my intention to journal my life now without a pancreas ( duodenum, and spleen) To write about insulin dependant diabetes from a total pancreatectomy patients perspective. I once had a dietary tech ask me what type of diabetes I had my response to her was " you tell me, I had my pancreas removed in September, what am I type 1 or type 2" her response with a ghastly look was " what you can't live without a pancreas" " well lady it was removed, I can assure you that one". She then went to tell me that you can't live without a pancreas and didn't have any idea that a pancreas could be removed and I really got her with the islet cell transplant part.
I have made up my mind the next person who tells me I can't live without a pancreas is going to have me tell them " are you kidding me.... does that mean I am going to die... now or later" I just believe that people who are working in health care should have some idea what can and can't be done. Oh, yea I forgot to mention I am a nurse also. I have been an LPN ( Licensed Practical Nurse) since 1988. My dear sweet spouse is also a nurse he is an RN about to get is BSN ( Bachelors Science In Nursing) He has certainly done the hard part, I am just here behind the scenes making sure he has clean clothes and food to eat, and a nice warm, clean bed to crawl into daily when he collapses. I will post a picture of my sweet husband.
To everyone from the boards.... Total pancreatectomy and others... HI... I will get into more specifics tomorrow.
It is amazing how many people find the blog. When I see a person is about to embark on that less than traveled road I send them an email with the link and say " read it and email me any questions that you have". I have met some awesome people in their search for a less painful life.
It is my intention to journal my life now without a pancreas ( duodenum, and spleen) To write about insulin dependant diabetes from a total pancreatectomy patients perspective. I once had a dietary tech ask me what type of diabetes I had my response to her was " you tell me, I had my pancreas removed in September, what am I type 1 or type 2" her response with a ghastly look was " what you can't live without a pancreas" " well lady it was removed, I can assure you that one". She then went to tell me that you can't live without a pancreas and didn't have any idea that a pancreas could be removed and I really got her with the islet cell transplant part.
I have made up my mind the next person who tells me I can't live without a pancreas is going to have me tell them " are you kidding me.... does that mean I am going to die... now or later" I just believe that people who are working in health care should have some idea what can and can't be done. Oh, yea I forgot to mention I am a nurse also. I have been an LPN ( Licensed Practical Nurse) since 1988. My dear sweet spouse is also a nurse he is an RN about to get is BSN ( Bachelors Science In Nursing) He has certainly done the hard part, I am just here behind the scenes making sure he has clean clothes and food to eat, and a nice warm, clean bed to crawl into daily when he collapses. I will post a picture of my sweet husband.
To everyone from the boards.... Total pancreatectomy and others... HI... I will get into more specifics tomorrow.
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