My story of CHRONIC PANCREATITES, a silent but deadly disease.. This my life!

[Wanda P]

Chronic Pancreatities is a deadly disease that is often un- diagnose able , it's a vicious disease that can present with gall stones, sludge in the gallbladder can cause chronic CP. Alcohol, cysts, Cystic Fibrosis (@the DNA level), r all Issues that can cause PERMENANT damage to the pancreas. Over 75% of patients present negatively on Blood Work, this is the standard tet format for the last 30 years, NO ADVANCEMENTS have been made in testing for this disease, as well as no viable treatments. Thousands of people suffer from this cruel, debilitating disease, often told " it's in your head", but in reality it is life threatening. If you can imagine having hot pokers stabbing, in your gut, back, with a searing acid poured into the wound, along with raging nausea, constant. Movement, odors, foods, chemicals, medications, everyday chores, can bring on a an attack, u immediately need to go to the ER, for narcotics to bring pain down, u then are starved for 7 to 35 days to REST the pancreas. This of coarse only happens IF you Have an compassionate, Educated ER Doctor as well as a Gasterenterologists that KNOW how hidden this disease is, if not your treated like its all in your head! Shes here for narcotics!?? :p .. This is happening all over the world, Children are suffering from this cruel disease, with no hope of treatment, very little compassion from GI's that, just give up. Basically, your pancreas slowly digests it self, if your lucky, you will develop dibetites, to end the pain. You trade an Evil disease for a lessor evil, but relief of the constant pain
Or you develop Cancer of the pancreas.. And die. I write this today in hopes that you will open up your hearts and minds, to the silent killer that is CP. If your in pain in your gut, had gall stones, or removal don't ignore that pain, ( u r often told its IBS, which symptoms mimc it, but certain clues can help u differentiate between the two !) u cause scarring which can leave you with this disease.. FOREVER no cure. If you know someone with this disease, especially a CHILD, please encourage your kids to embrace them, in love and compassion, tolerance. CP I'd highly depressive ,isolating disease, people will ignore you, thinking " oh, that person can't dance, party, or play in sports, it's not the person, it's the disease that traps us, in Pain. But our minds are bright, we are kind, loving, compassionate and humans, who need to hear from our friends, and families how much you care. Be a voice of those suffering from CP or any disease, go visit them, don't be offended if they don't visit you, we're not being rude... We're suffering, but still need to HEAR you care! Show your love, as one day you will need that love.
I say this with love and concern, PLEASE be careful with alcohol, abuse of alcohol has serious ramifications, like chronic Pancreatites , liver disease, these disease's that are for EVER. You never are the same with CP, u can have nothing but bland foods, & water.. Be Smart!!
Two sweet teenagers right now are fighting this disease, they have never had a real child hood, to Hayley & JR, please say a prayer that a cure is found .. <3 :p

THIS IS HAYLEY WHO HAS SUFFERED FROM THIS DISEASE SINCE SHE WAS 6, in this video she does a HOSPITAL ROOM MAKEOVER! She showing you what those in chronic pain call DISTRACTIONS, this distracts u from sever pain!
She is extraordinary young woman who, shows incrediable grace in such pain.
http://www.youtube.com/watch?v=RCAMgm8pgkA&feature=youtube_gdat...
WandaP

THIS WHAT HAPPENED TO ME

Hello new friends, My name is Wanda, i live in Calgary, Alberta, Canada, i am 48 years old.. I want to be clear i tell my story not to cause fear, but to promote understanding, friendship and knowledge.I have had severe asthma since i was born, and always took inhalers, ect. Worked out 2 hours a day to maintain my weight when i was young.. I met the love of my life at 17 at the world famous Calgary stampede. My CP story began in 1988 at the age of 24 i was struck down with a case of idiopathic pancreatitis, it was vicious. frightening and puzzling. I have not been a drinker at all, so the doctors blamed it on my weight, i am small in height, but always struggled with my weight, once i was with my love RED, i didn’t obsess over it. In 1988 the Olympics were in Calgary it was a stress full time for all businesses, working full time for a week during a sever attack was terrifying. So finally went to the doctor, blood work confirmed it, i was hospitalized, IV fluids, starved, for a week and sent home. No other test were done? Life went on and in 1990, i married RED, during this time i had low grade throbbing and burning of the pancreas. Blood work always normal..So ate ZANTAC and went on with life, in 1991 we moved to Kelowna, B.C. fulfilling my dream to manage a resort community. It was a busy hectic life, especially for me 40 loads of laundry, managing maids, greeting guests ect was challenging at best. However with that i got my degree in hospitality management. In 1991 i experienced my first burning, (they burn orchards, ect in the valley in the spring and fall), my lungs suddenly failed due to the smoke in the air. I was rushed to hospital and put on IV solumedrol, which is a steroid, the pill form is PREDNISONE. I was treated and sent home, but struggled. I saw a family doctor and thought she was so cool, she had asthma too and was taking prednisone and swore that it worked for her and had no side effects. She put me on 50 to 100mg a day, i maintained this for 3 years. Now if you know anything about prednisone you should not be on this drug long term unless monitored by a specialist, or on these dosages.. AT ALL.. However i trusted her right?? Prednisone causes mood swings and all sorts of side effects, that were made far worse with the high dosage i was on. In 1994 we decided to leave the resort job we both loved, we found it very stress full on our marriage and we had no life. We moved back to Calgary, I saw my favorite doctor. DR.Stephen Field, at the Foothills medical center. He was very shocked at my appearance and the dosage of prednisone, he immediately scaled me back. At this time my pain was sky rocketing, but you solider on right. Eventually Field took me off the prednisone. My stomach was creating so much bile and acid. I had an endoscope, confirming lower sphincter was not closing, allowing re-flux, up constantly=GERD. Took again more meds for the stomach, still in low grade pain. If i had a drink, it would increase 10 fold, and felt like pancreatitis, but i didn't want to complain. Then in 1994 (dec) my lungs failed, immediately rushed in, IV solumedrol, I said to Dr.Field (DOC) it feels like pancreatitis, he’s like "no it can’t be" I am like test me, so he does blood work, comes back negative.. I am beyond devastated, in distress. So kept me in a week and it was the worst week of my life, constant steroids, my pancreas was flaring i KNEW it. but it’s not on blood work so it can’t be right?? Sent me home At the time i was 220lbs, very obese as while on prednisone you cannot lose weight, un less you starve, despite working and going to school, i was still fat. Thus from Jan of 1995 to Feb 1996, i could barely eat,( i lost 120 lbs during this period) consuming maybe water and crackers to control the pain, mean while my lungs had failed 4 different times, in which i was put in the hospital and given IV solumedrol, which every time made my pancreatitis, rage. But Dr. Field said "Steroids do NOT cause pancreatitis Wanda" I am like that’s BS as the pain is distinct, it’s not like indigestion. He was adamant. "He flippantly replied "well u will thank god it’s NOT pancreatitis, its Gerd?!!..I was very hurt as i new Doc for a long time, but i looked good and losing weight, so i must be fine right?? I went to my family doctor and said we have to prove this, she says go eat something bad for you! I said hmm, so since i spent months staring at McDonald's from the hospital ward, i had a big Mac, agony, went in for blood work.. Boom PANCREATITIES. I was elated, treatment, it’s not in my head, we get a cause and fix it right?? They immediately hospitalized me, i was on IV fluids, Demerol, finally some relief from the hell i had been living in. I knew that the steroids inflamed the pancreas, however the lung doctors were still adamant that it was not the cause. I was in for 6 weeks, they took my gallbladder thinking that was the cause, its stones Wanda! I have surgery, to remove the gallbladder, the pain is still there, i was beyond devastated. I went thru 6 GIs thru that stay, all treating me so disrespectfully. I said to the surgeon the pain is still there, he’s like "no its phantom pain" I am like really you’re going to say that to me?? I remember i just wanted out of there, i left like i came in with idiopathic pancreatitis and now no gallbladder (which i later found out was healthy). I knew in my heart it’s the steroids, Dr. Field was now pensive and wondering. I was beyond pissed, but, my family doctor agreed to help me with pain meds to give me quality of life. So i was determined to prove what i felt was the truth. I went to the university of Calgary’s medical library, i read for over a month, everything i could find. I found conclusive proof that steroids in a small percentage of the asthma population can and do get chronic pancreatitis. I also found which i sure many of you know that blood work is in conclusive in over 50% of cases in 1996. I went back and promptly dropped my evidence on Dr.Fields desk as well as the GIs and confronted them. First Field was surprised, but then admitted, yes it happens. I said you don't tell people with lung conditions this as it creates fear. so you would rather deny me that knowledge to protect ur treatments??? He was thought full, and said " look kid, i know i have pumped you full of steroids but it is the only OPTION to keep you alive! I said fine, " but do not negate my suffering, i have suffered horribly when all you had to say "yes it can happen" The GIs however, were pissed that i would investigate their so called diagnosis. So there began my starting my life, living with CP, every time i am given a steroid, it in flames it. What i didn't know was because that family doctor gave me so much of prednisone, it caused a chemical sensitivity to my pancreas!( by this time it was too late to sue her) I really have struggled with my lungs, coming in and out of hospital, in one ER visit a ER doctor said "Wanda they can see pancreatitis on an CT Scan"?? I am like i had one 2 weeks ago. He brings it up and says in my opinion you have CP you can see it. I was beyond shocked, that all these GIs never once CT scanned me?? in 5 years. I immediately decided ok boys you want to play, its war. I got referred to the oldest GI at the U of C Medical center, teaching school. I saw him once, he confirmed i did have CP, but for some reason the younger GIs would not agree. They fought in front of me. I made the decision at that time to get rid of the GIs all male boys club. See other medical conditions popped up after gallbladder surgery that were very crippling IBS, irritable bowel syndrome. So severe that you could see my body cramping on x-rays, mris from my esophagus to my lower intestine.. While brutal, nothing like pancreatitis, but male GIs blame it on being a woman and stress. blaaa blaaah. So in 2004 i found a female GI, we have worked together on diet, pain management, exercise when my lungs will allow. I used a medical diary to chart everything what i ate, did, pain levels, lung peak flow rates, everything i charted for over a 15 year period. By doing so, i had hoped that all my suffering was not going to be for nothing. Dr.Field embraced it, in doing so he and many other of the top professors at FHMC take it very seriously how the consequences of steroids and how they cause pancreatitis. In effect i helped at least 3 other asthmatics, not go thru the suffering that i have. I try and be positive, loving and enjoy life. I am thank full for DR.Field as it took 15 years but he stabilized my lungs, he never tossed me away like garbage like the GIs did all those years ago. I say to all that are suffering, if you want to be taken seriously do a medical diary, it’s says to the doctors, this is what i did on that day. I also learned that Pancreatitis can also be irritated by smells, whatever stimulates it. We are now at the point that we feel that the pancreatic sphincter is leaking acid, chronically in my stomach, causing 3 times the amount of bile and acid. I am having liver issues now.. But i say, i lived my life on MY terms, i fought on MY terms, don't let any MD tell you it’s nothing, believe in yourself, stay positive, stay away from fats, alcohol, sugars. Find what works for you. I am on lipase, which helps, use the pill form, far better than the caplet, it digests with the food. I am sulficrate which helps so much with the excesses in the tummy, however i have noticed a soreness, so we shall so see what will happen.. I cannot stress the importance of our stories, there has been very little movement in the study of the pancreas in Canada. Which ticks me off, i can relate to the person who said "well if you have cancer, there is treatment, hope" for us we are stuck in a world of limbo, pain, insensitivity, but i will not let that define me. I am not CP patient, but a human being, with a voice that will be heard!! So speak out to your doctors, don't give up, listen to others stories as we have no books to go by, but we are the history books.. furthermore PLEASE DO NOT STOP TAKING PREDNISONE IF YOU R ON IT.. My sensitivity was due to the excessive dosage that i was on. I have tricks to protect your tummy now.. I am blessed that i had a family doctor that believed in me, she helped keep me alive.. 1 rule i have laugh every day, don't go to the pit of dis-pare that CP is.. I am here if anyone wants any support, or to vent go for it!!