my life after pancreatitis...post pancreatectomy

Reaching me

2011-11-10T11:27:00.000-08:00

If you attempt to reach me, you will have to leave your email address. The way these blogs are set up, there is no way for me to know your email address. If you want me to respond to you, somehow you will have to leave away for me to contact you.
It is my sincerest desire to assist ALL who have suffered with this affliction. Please allow me to respond to your requests.
Lisa

I am still here

2011-11-05T06:10:00.001-07:00

I wanted to let anyone who has ever kept up with the blog know that I am still here. I have celebrated the 5th anniversary of my surgery tp/ict. Our lives this years have been so busy. My husband just finished his Masters in Nursing. He will sit for his NP exams very soon. My days were spent packing lunches, trying to keep up with the laundry and the house. For those with chronic illness, you understand how difficult minor tasks can be at times. Even though I did not earn an academic degree somehow I feel like I have accomplished something, by just doing what I have done. This self directed learning procees was so intense, he did not have time to focus on anything but school.
I make posts when I do to let those searching know that 5 years out, I am still here, enjoying my life. I don't want to give people false hope, I suffered for 10 long years waiting for something. I still have deficits, I still have pain, but this pain is controllable, the other was not. I still have times when I have to lay in bed which btw is my least favorite thing in the world, but that seems to be something that assists with the pain, so lay down I will do. I have survived long enough to see my only child marry, give birth.. twice. Hold two precious little girls who have their grandmothers eyes. What more could a person want? If you are on the fence deciding about surgery... don't wait another minute. Don't let pancreatitis steal one more minute of your life.
Yes, I check my blood sugars frequently, my last HA1C was 5.7 equal to that of a non diabetic. I also give insulin every night ( just to keep those little islet happy and snug as a bug in a rug in my liver) to answer the next question the amount Lantus is 3.5 ( yes I said 3 point 5 not thirty five). I purchase special insulin syringes that measure half units. I eat a lower cab diet. Carbohydrates are the building blocks we need to burn as fuel, so eliminating ALL carbs in not the answer, without some carb we burn muscle. I am here if there are any QUESTIONS that some may have. After reading my blog you have probably determined that I am a Christian. I will leave this post with this scripture.

19 This day I call the heavens and the earth as witnesses against you that I have set before you life and death, blessings and curses. Now choose life, so that you and your children may live 20 and that you may love the LORD your God, listen to his voice, and hold fast to him. For the LORD is your life, and he will give you many years in the land he swore to give to your fathers, Abraham, Isaac and Jacob.
Deuteronomy 30-19

My 44th birthday

2010-08-03T20:12:00.000-07:00

Today is my 44th birthday. I have spend the last 3 days in bed. This has be happening quite frequently lately. I went to church on Sunday ( the first time in 2 weeks) I knew that I was getting really hungry, and I know this is not good, I was trying to get home to eat. Today is better than Sunday afternoon and yesterday.
I have survived longer than I ever thought. Each day is a miracle, soon I will be a grandmother again.

Chinese posts

2010-07-02T21:28:00.000-07:00

I really don't mind if people leave comments regarding pancreatitis, but this is MY blog. It is rude to leave comments in another language, but to leave explicit content on a blog intended for people with a life threatening illness is another thing. Find somewhere else to post your comments, I won't tolerate this, I will pull this blog before I let this become a place for people to post what ever they want. It is simple enough to get a blog, why not get one and do what you want on your own. Enough said.

Life goes on

2010-06-27T12:54:00.000-07:00

It will soon be 4 years since I had surgery. The big question every one asks was it worth it. The answer is YES! Did it take away all of the pain, NO. That said, I have not woke up screaming in agonizing pain since the day of surgery. I had still had pain that made me cry and have felt pretty bad, but that pain is gone. Since my surgery, I have had chronically elevated liver enzymes. I was told that this would go away, it never has, occasionally they will get pretty high. There are times that I feel pretty bad, but I am able to eat some, which is a big deal, before I was tube feeding with no hope of ever eating again. My quality of life is better, I do get bummed when I have to spend my days in bed. I would say that I spend about 4-5 days in bed per month compared to getting dressed about 4-5 per month previously. The amount of pain medicine that I take has drastically decreased. No where on any of the journal articles that are posted does it say that people who have tp/ict receive complete pain control. If these articles are read, they will give a percentage of people who were able, most do NOT receive complete pain control. Most continue to live life with pain, and challenges. We were challenge prior to surgery. No one promised us life would be easy. We have God's promise, that he will always be with us, even to the end of the earth. I am counting on this, I have put everything on his promises. To date, he has never left me or forsaken me. Nor will he ever.

I have notice that there is a several Japanese posting going on the blog. I don't really know what this means and I will find a way to translate. I will assume that what is written here is good until otherwise determined to be something else. Just know that I am still watching and reading posts.

I hope this finds all with pancreatitis well ( as well as you can be with the beast within) just know that you are not alone. There are many fine yahoo groups that deal with the topic of chronic pancreatitis and I high suggest that you join them. I will NEVER forget the day I found one person who knew exactly what I spoke of when I talked about the pain. NEVER forget when I spoke with another woman who was getting the run around just because "women have a lot of abdominal pain that is never diagnosed" I was told this by a very respect physician at the Mayo Clinic in Minnesota, despite the fact that I had a documented known, visually seen annular pancreas from an open gallbladder removal. I was told "poor interpretation by your surgeon". No it was really there, causing a small bowel obstruction for me.

If one person learns that they can trust what they are feeling through these blogs then it will all be worth it. Don't let someone tell you what you feel, just because they have been to school for years, does not give them the ability to know what and how you feel. Be blessed and know that I read all comments. If you have questions ask them, I will get back with you.

I wanted to add some pictures of my life here

2008-07-05T07:23:00.001-07:00

This is a five generation picture. From lt to rt

Thelma Russell ( my grandmother) holding Madeline Riley Herth

Teresa Wolf ( my mother)

Lisa Atwell (me)

Ashley N. Herth ( my daughter)

Life after.......

2008-07-03T06:46:00.000-07:00

It has been such a long time since my last post. We have had many celebrations since my surgery, and felt the need to blog today.
I have become a grandmother. My dg was born 2-11-08 and her name is Madeline Riley Herth. I was present during her birth and actually got to cut the cord, as her father didn't think he could do it. She is a much loved little girl and like her mother, she is spirited. That is my way of saying she is a handful.
It is with great regret that I post my mothers husband passed away last month. He had been in the hospital since March 6, 2008, he passed May 28, 2008.
The topic of this blog is to chronicle life after tp/ict. My quality of life is better. I am able to eat without rolling in the floor screaming. I still have chronic pain. I have pain after eating and through out the day. Life isn't easy, and I have not returned to work. However, I do consider the surgery somewhat successful. I do have a few days where I can accomplish things. I have some bad days where I find it difficult to get dressed. I have always been the type of person where I will do what ever I can to get done what needs to be done. If it meant taking the tube feeding off the pole and carrying the pump and solution down stairs to another pole and staying down there to get the laundry done ( while tube feeding myself) well that is what was done. Someone had to wash the clothes and at the time my husband was working and a full time college student.
Michael finished his bachelors in nursing in the summer of 2007. He was of course 1st in his class. Currently we are looking at NP school. He is attempting to switch jobs so that he can full fill his clinical obligation. NP education requires a certain amount of clinical time observed by a physician and it must be done around your schedule. It is impossible to work M-F 7-3:30 and accomplish the clinical requirements so we are looking for a weekend option position.
It is my hope to post some pictures of the events of the last year. I will however need to find them first so that I can post them. Most likely the pictures are divided between 4 computers. OH, the joys of technology.
Lisa

Life is GOOD !!!!!!

2007-08-15T19:46:00.000-07:00

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

2007-04-28T11:41:00.000-07:00

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.

Friday April 27,2007

2007-04-27T13:04:00.000-07:00

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.

April 16,2007

2007-04-16T16:04:00.000-07:00

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.

Today is April 12,2007

2007-04-12T07:52:00.000-07:00

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.