Replies to Joey


On April 1, 2010 I received a response to Joey's Letters from someone who was experiencing severe (undiagnosed) pain and dispair. That person sent his email address to be posted so others in the same boat could contact him.

In my clumsiness I lost that email before I had a chance to post it here. If that person reads this page again, would he please resend his response and email address. I feel terrible about this.
Thank you. Swede

Since "Joey" has been on the Internet, I have gotten letters from people (or loved ones) suffering from Pancreatitis. Here are a few:
Date: Thu, 4 Dec 2008 12:26:19 -0500 (EST)
Joey's Replies ,Excellent
Comments-,i can only hope that no one put any faith in the doctors.they are using pancreati stents in people which will and do migrate occlude cause infection and even more your online for complications of pancreatic stents.please call the fda and help me to end the needless suffering.these stents must be recalled.any questions please call me at (313)582-8681
Date: Tue, 2 Dec 2008 12:26:19 -0500 (EST) Joey's Replies ,Excellent
Comments-,Wow - how many people are suffering? I am an Australian and my husband has just been diagnosed - he is 50 and has, undoubtedly, alcohol induced pancreatitis. He is undergoing a gastroscopy and colonoscopy next Monday to rule out ulcers and cancer. He is in fairly constant stomach and back pain and is unable to sleep. I am trying him on green tea (something that has helped a fellow sufferer)and will be following all other help until I find some relief for him. Has anyone tried "pancritin"? I am happy to be contacted at - I wish all sufferers relief.

Date: Thu, 30 Mar 2006 00:31:15 -0500 (EST)

Joey's Replies,Excellent
Comments-,Hi my name is Connie I just found this site and am very glad to find information about pancreatitis that actually makes sense. My bestfriend and employer went into the ER 3/8/06 and was diagnosed with pancreatitis as well.

I have been working with him for orver two years and I know that he threwup every morning for those two years but refused to go to the hospital. He started getting more worse with aganizing pain in his stomach and not being able to sleep at night. He finially went to his private doctor which prescribed him some zestrill and high blood pressure pills.

He got worse and went back to his doctor and he finially ran a upeer GI on him and found out that he may have a bad liver, so he had him to take some blood work for a hepititus panel. He had an appointment to take the test, but that night he called me and my husband at four o clock int the morning barely able to speek in major pain.

We took him to the hospital and they gave him morphine for the pain and then they had to give him the highest dose or dilatan. He was still in aganizing pain and they eventually got him a room.

He started out seeing things that wasn't there and not knowing what was going on around him. It was as if he were someone else altogether. He was hooked to a urine bad and bile bag, oxigen mask over his face and was not allowed to eat or drink anything at all for the fifteen hours he was there except for one or two very small pieces of ice chips.

He was in this state for one week until they moved him to ICU. Now he has been there for another week or so with tubes down his throat, a breathing machine to make him breathe food pumped through him and they keep telling me that he is making improvements alittle at a time, as they are able to take him off the vitalater alittle at a time.

I want to have a positive attitude about his survival because I am a christian and I know that GOD will do the impossible. I just don't know if anyone in his shape has made it through something like this.

I believe that he may have gotten this disease years ago when he had his apendix taken out but there is also the reality that I know for a fact that he drank at least an eighteen pack of beer and two packs of cigaretts a day. If anyone has a simular story that may help either bad or good will you please let me know my email is

Date: Sat, 25 Feb 2006
Joey's Replies,Excellent
Comments-,Hi! Please take heart! After suffering with pancreatitis for eighteen years with numeroud bouts of very elevated amylase and lipase, intense nausea, vomiting, diarhea, jaundice, intense episodes of knifelike spasmodic pain, and also constant pain that never let up, I found a physician who finally ended my nightmare.

  An ultrasound was performed which showed that I had a shriveled up and scarred diseased gall bladder with no stones. A surgeon performed surgery to remove the gall bladder and reported that the ductwork was extremely narrowed so he surgically corrected it.

  Now I am basically free from the former symptoms, but do take Nexium and have an auto-immune disorder. There are many causes of pancreatitis.

  I was about twenty when I first had symptoms and did not drink except for an occasional drink maybe every few months. While some develop the condition due to alcohol or certain meds, the scientists have identified certain genetic deviations among a many of those who suffer from chronic pancreatitis so at least a sub-group of those who have the condition may be predisposed.

  Good luck in finding your individual solutions. I had been hospitalized several times and had taken the pills to reduce the enzymes produced by the pancreas, but surgery and a loving husband who insisted that I go to the doctor during one of my crisis was my ultimate solution. I, too, had given up on finding help from doctors, but it only takes one doc to actually listen so keep trying!

Date: Tue, 31 Aug 2004 19:10:01 -0400 (EDT)
Mark E. Armstrong

Joey's Replies,Excellent

Comments-,Mark's Story

I was stationed in the Philippines and did my share of drinking. I don't think I drank to excess but I did party pretty hard on the weekends. In 1986 I was having some stomach pain and went to sick call. They said I had gastritis.....I spent a week in the hospital and on my last morning a nurse came in to take some blood......Who knows what time it was. I kind of woke up and ask her what she was doing. She said the doctor had asked for some test. So I told her that I was leaving in a few hours and she said she would have to see. I was pretty tired and didn't think much of it until she finished and told me "Well Mr. Johnson you have a good day" I said. Hey I am not Mr. Johnson. My last name is Armstrong......She got all flustered and the guy in the bed next to me said that his name is Johnson...Well that is how it goes in hospitals

Anyway.....I didn't have anymore pain and later I would realize that the pain I was having was from my pancreas...The pain was no where near as bad as it was going to become. I wish they would have diagnosed me then with panc. Maybe they could have prevented the problems I have know. Hindsight...Isn't it wonderful......what you could have done differently. LOL...

So in Dec on 1987 I went to work on the Flighline as usual. I was having some pretty good pain, but you tend to rationalize things. I told myself it was just bad heartburn. I ate tons of Tums. I got off work and was pretty tired. I went home after work which was about 11 pm. I worked swing shift. Anyway I woke up the next morning, dying of pain. It was the worst pain that I could ever imagine. I crawled out of bed and got myself dressed and walked to a friends house...We both lived off base and I told him that I needed to go the hospital.....He jumped up and we went to the ER. I told the ER doc what was going on and he laid me down and examined me. He said he thought that I had Pancreatitis.

Up till then I didn't even know what a pancreas was let alone what it did. He asked me to drink this liquid which I did and about 5 mins later I told them that I needed to get sick. They kept telling me to go ahead. I didn't want to get sick on the floor but they kept telling me to just ! get sick.....I proceeded to throw up all over the place.....After I finished getting sick, The doc tried to put an NG tube down my nose and into my stomach. Every time he would get so fat< I would start to Retch and I would yank the tube back up. This guy tried about 10 times or so and I wouldn't let him. It was the worst feeling. They then decided to give me some pain meds. I was hurting so damn bad......I remember asking the Nurse how long the pain meds were going to take and he said about 1/2 and hour. He told me later when I spoke to him that he told me that so I wouldn't be waiting for the drugs to hit me.....I began to fade and was told later that they tried repeatedly to put this NG tube in but I wouldn't allow it. I was throwing people all over the place to get this tube back out of me. I do not recall any of that, but I am a big guy. 6 feet 4 and 200 pounds then.

The next thing I remember is waking up in a room. I remember them telling me that I couldn't drink anything. I was so thirsty.....I got up out of bed and walked to the drinking fountain and rinsed my mouth repeatedly......I then stumbled back to bed...The next thing I know...I wake up in ICU with tubes coming out of me all over. I would fade in and out and remember them pumping into me some anti acid stuff into one of my tubes.. They would later become my drainage tubes.....when they would pump it in it would come immediately out thru my NG tube. I am unsure how long I was in ICU and really had no idea what they had done to me.

They then moved me to the 5th floor of the hospital and the doc would come in and everyday back out the drainage tubes about 1/4 of an inch so that it would heal behind itself...Time passed, They got out the drainage tubes but I was not getting any better.....I was in Limbo for about 7 months.....They then decided to operate again...I woke up with the drainage tubes in me again but this time they didn't remove them. Everyday I would drain about 1 cup out of each side and when I asked what the stuff was, the doc were evasive.

Finally in NOV 88 I forced myself out of bed and walked to the elevator and down to a Phone where I could call my mom...She had no idea. She knew I was sick from the Red Cross, but she figured, no news is good news. I told her that she needed to get me out of there and that I would die if she didn't. Three days later I was in Texas. She had called our Senator and he pulled some strings. When I got to Texas, I weighed 140 pounds. I couldn't hardly move. I really thought that I was going to die. The doc's there however filled me full of confidence. They operated on my in Dec and I woke up out of the operation without drainage tubes...Three days later, I got up and walked to the door.....It was hard but I felt so much better and was getting stronger everyday. At the time I still didn't know all that they had done to me. It wasn't until I looked at my Medical records that I found out that I had pysuedo cyst the size of a 2 liter bottle that they removed on the three surgeries.

After another couple of weeks they sent me home to Oregon for 2 months. I became stronger and stronger. When I went back to Texas they asked me if I wanted to stay in the military. I told them I did and they sent me back to the Philippines. I would still get pain but nothing like I felt before..I stayed in the Philippines for another year and 1/2 until I got orders to Grand Forks, North Dakota.

I was there about 6 months when I started having symptoms of Diabetes. Of course I didn't know this. I would again rationalize ( which now I try not to ever do). I was peeing all the time I rationalize because I was drinking lots of water because I was trying to exercise. My pancreas began to hurt again. I went to the ER and told them that I had pancreatitis in the past and they admitted me right away.....The doc asked why I was still in the military. I told him, the powers that be asked me what I wanted to do and I said I wanted to stay in. He said he didn't think that was a good idea and proceeded to Board me out of the military.

During that time I met my soon to be wife and I moved to California. My pain was worse than ever and the military didn't do anything to help me so I went to the VA. I couldn't handle the pain and went to one of the VA hospitals. I actually had a PA tell me that I didn't have pancreatitis. I asked her how she knew that. She told me that I didn't have elevated enzymes, which later after years of study I found to be normal for me since I didn't have enough pancreas left to create them. Needless to say they did nothing for me. My wife and I moved to my home town of Bend, Oregon where I continued to have problems. I applied for my VA benefits and went and tried to find a job.

I ended up going to work for the United States Postal Service. I worked for them for about six months delivering mail sometimes bent over in pain. I went to the ER after many days of being in pain and the doc at the ER called the post office to inform them that I would not be coming to work......The post office let me go the next day. I was pissed but it was a blessing in disguise. I sent the letter that they sent me which basically stated that if I couldn't be there, they couldn't use me.....I had only missed that one day. Anyway. The VA made me unemployable right then. I now get a VA pension.

It still didn't fix my pancreas problem and I went thru many doctors and many hard times. I tried everything. I finally found a physical therapist that said she could help. I have been seeing her for about 6 years now and it is the only thing that I have found that really helps me. It is really amazing. If I can ever help any or you in any way. Please let me know. I have left our so many details but it would be a book by time I finished. If anyone has any questions feel free to write me. I have also set up a website that deals with pancreatitis. It can be found at

I hope this finds you and yours well
Mark E. Armstrong

You can reach me by e-mail at:

From: "Phillippa Hurps" {}
Date: Mon, 29 Sep 2003 01:24:54 +1000


I have suffered from Chronic Pancreatitis since the age of thirteen, and I am now twenty eight. I have been through the "sent home with an aspirin, intensive care, cysts, passing out, operations and no one knows what causes it. We don't accept the excuses of stress, eating disorders, genetic, alcohol and imagination.

I have written to offer some help in what we have found over the years, through trial and error. Pancreas 5000mg is excellent and should be taken before meals, ask your doctor about it. I take Capadex for daily pain, but this should not be taken long term. Viokase Enzymes has also helped.

As for diets, I stay away from the obvious fatty hard to digest food. Keep low on the carbohydrates such as bread and pasta as they make the pancreas work harder. Egg whites are great for protein and I take iron supplements as I don't eat red meat. Dairy is kept to fat free as it is the fat that is the enemy. Eat loads of unprocessed raw foods and eat small regular meals (6 per day, but snack size). I drink lemon juice or grapefruit juice 3 times a day (not for kids) and coffee has also been suggested to stimulate the Pancreas. Drink plenty of water and don't drink alcohol. Beans, legumes, seaweed and a multivitamin for well being is also suggested. Exercise 3 times a week.

If this helps one person, it was well worth it. This information was what helped me over the years and is a guide only. Please check with your doctor if it is suitable for your condition.

email me at
From: (Paul and Jerri)
Date: Wed, 25 Jun 2003 04:25:52 -0400 (EDT)

I was thrilled to see your sight. I was just recently in the hospital for an inflammed pancreas. They at first thought it was my gallbladder and the hospital surgeon took care of me and found it to be the Pancreas. All the symptoms and treatment are right there in the letters. I feel so lucky that I didn't have to go through what others have and my diagnosis was made so quickly. My Dr. said that he felt it was caused by me taking so many toxic drugs. I have diabetes, high blood pressure, high cholesterol and lipid levels, thyroid disease, just to name a few. A couple of my medications were changed as they are hard on the Pancreas.

Thank you again for your sight. I mention the medication above because so many people were told alcohol was the problem. Did you know Menocycline, and Tetracycline antibiotics are horrible for the pancreas? This is something some of these fellow sufferers may want to check out.

Thank you again for your site.

Jerri White
Date: Tue, 3 Sep 2002 02:21:07 -0400 (EDT)
Joey's Replies,Excellent

Comments-,I've had to deal with a number of misdiagnosis by a few doctors. My first misdiagnosis was at the age of 15, it was a very serious ruptured appendix. I am now 52 and it now 14 surgeries later, because of it.

It has been at least 4 years of my complaining of serious bouts of abdominal pain, nausea, sometimes vomiting, weakness, irregular bowel habits and a hugh distention. The distention periods were so unbareable that I wanted to die from the pain.

I had many abdominal x-rays, colonoscopies, upper and lower GI studies. From that, I was told I had a hiatal hernia along with gastric reflux disease. When I asked about my liver, my doctor said; "I don't do livers." This is a gastroenteroligist! The last time I check, my digestive system had more then just a stomach and intestines!

I had such a bitter taste in my mouth and felt so sick, I said to my husband,I feel poisoned. Nothing tasted good to me and I began to lose weight! I was sent to a psycholgist for help dealing with my anger at doctors and my pain. I was told I had fibromyalgia and "fibro is not that painful!"

Problems with my muscles and joints grew worse. I was on serious medications, more then I could count. The best help I received was from a wonderful Nurse Practioner, she medicated me for the increasing muscle, joint, abdominal pain and distension, after regular medical doctors made me feel so horrible about myself. They immediately indexed me into a drug seeker. The only thing I ever asked of them was to find out what was wrong and please, please help me! I never once asked any of them for pain medication. This went on for 3.5 years of my life, stolen, painful, sickly years of my life.

For reasons that now seem like fate, my husband and I relocated to the southern part of our country. All the while we were making our move, I felt very sick. I noticed I was developing brown patches, drenching sweats, my blood pressure was dropping and my urine was becoming dark. I thought I was dehydrated and began to drink more water. I even stated to my husband, who was preparing himself to leave for 4 months of work, "I hope I live to see the completion of our new home." He was so shocked at my comment that I was taken back by my own words! My body was concerning me.

One week after my husband left for work, I was in the ER -- Vomiting, weak, shakey and grey in color. They did an ultra sound and found that the pancreatic duct was narrow to a minium. I was told this by a technician performing the exam - she said, "my dear, you must be in a great deal of pain." The ER physican told me nothing about this and I said nothing in fear of getting the tech in trouble. I didn't have a physican in my new state, so the doctor sent me home with a name of a physican on the house list. This doctor and five other offices turned my down. All of them were on my PPO list. I was lucky with number 6 and when I met him 3 days later, I liked him. He immediately sent me to a surgeon and said; "there is no such thing as "fibromyalgia of the belly." A quote from the gastroenterologist I saw, while I appeared 9 months pregnant and in pain! I had to wait 3 weeks to have the operation, my own doing.

I met my surgeon and told him of my surgical past. He was young and knew it all. He wasn't aware that I had medical background and knew that a purse-string removal of a gallbladder was not a wise thing to do. He assured me that if he saw I needed the more open approach, he would do it. So, with that, I was comfortable. I was sure he would do the right thing, WRONG!

Sure enough, he did the purse string procedure and 10 hours later I was in trouble. The contents from the gallbladder spilled into the common bile duct and blocked the pancreas. However, no one took that approach. An attack of acute pancreatitis mimics a massive heart attack. I went through all the exams for the heart, never once did they do an x-ray of the tummy. They sent me home.

Three days later I had a follow-up with the surgeon. I told him I was very sick. You won't believe what he said to me! "My surgery was a success, if there is something wrong, it wasn't from what I did. He sent me home.

Two days after that I'm on the phone with 911. I screaming over the phone for someone to please help me - I can't breath, it's so painful to breath. I explain to the ER physican that I just had gallbladder surgery last week and I've been sick since. He does and EKG and sends me home.

A new neighbor help me at the hospital and had a list of my phone numbers. She called my 27 year old daughter to come - "your Mom is very ill."

Three days later, my daugher begs me to return to the ER. She had called the surgeon and she was shocked with his response; "I saw your mother last Friday. If she is sick, it isn't from what I did, she needs to go to the ER, I'm going on vacation." By this time, I could hold nothing in my stomach. I hadn't had a bowel movement in days. My daughter kept asking me - please Mom, lets go to the hospital. I told her that I was humilated to often to go, but for her, I caved in. WE sat in the ER for 4 hours, with a bucket by my side containing deeply green contents. Finally, I entered the inner sanctum for third time and if turned away, I thought, I would not come back!

When the doctor came through the door, he asked me and my daughter to repeat my recent history and the doctors comments. Each time we repeated the same story of ER visits, surgery and more ER visits, he grew more intense. When he returned he told me I was a very, very sick woman. I was shocked! How could I go from a number of other doctor sending me home and going for vacations, to him telling me I was "very, very sick?" I had pancreatitis, and my bowels stopped functioning and I was in trouble.

I've read what other writers have told you - sludge, distension, painful breathing. I get so angry, with all the education these doctors go through, yet, they don't know garbage about something as serious as pancreatitis!

I had an ERCP and a sphincterotomy. Even that was screwd up! I was medicated to sleep as I was trying to explain that I had neck problems, I couldn't position myself on the table and turn my head to the right. I now have to have spinal surgery, my arms are going numb. They injured my neck.

What it all boils down to - doctors don't want to listen to their patients. If there is pain involved, it's because we, the patients, want drugs! They can't even make an educated guess. It's as if the pancrease doesn't exist.

When the pancrease is blocked, such as in an acute case, it can be very serious!- Life threating. The pancrease is a digestive gland. It makes insulin. Insulin aids in digestion in the intestine. When it is blocked, the digestive enzymes begin to digest the pancreas itself. That is why some acute cases become chronic -- pancreatic enzymes begin to digest the pancreas itself.

You don't have to drink to get pancreatitis. Just have someone blow off a blocked pancrease, post surgically, then you are in danger of developing a chronic condition.

When you think of someone in developing diabetis, the first thing they begin to do, pass large amounts of urine.

In my opinion, people who have problems with high yeast content, could develop liver or pancreatic disease. The intestine, because of yeast, could cause a fermentation process - just as in the fermentation of alcohol, but in the bowel. You can develop what they call a "Fatty liver" and you don't need to drink to get it.

Pancreatitis affects many systems, thats why it is so dangerous. It can drop your blood pressure, increase in pulse and you begin to show signs of shock! Drenching body sweats, muscle spasms from clacium, potassium and sodium being affected. your body fluids begin to deminish, that is why your blood pressure drops and your heart rate begins to race. You may find that your stools are pale, or they may float in a froth like substance. That froth, I believe is undigested fat!

Stools should be brown in color, this comes from the thick, pasty tercotta color of the pancreatic enzyme. If you have a history of pancreatitis, I have learned to watch the size, shape, color and density of my stool. Stools should be formed into a solid, brown and sink to the bottom. I will be using my stool and appetite to determine a needed visit to a doctor.

I have found that the incision to the "spincter of vatter" help with the drainage of the common bile duct. The common bile duct connects the gallbladder and the pancrease to the begging of the small intestine. I jump starts digestion.

I hope my experience can be of assistance to anyone else out there. Pancreatitis can kill you and it shouldn't be taken lightly. Family members need to be strong advocates for their loved ones. Educate yourselves by reading as much on the subject as possible. I have found this site and search word "pancreatitis" is helpful. Other sites are, "Pancreatitis Supporter's Network", search, "Gastroenterology" seek site of "Jackson" or "Jackson Institute of Gastroenterology."
Date: Sat, 20 Jul 2002 19:10:56 EDT

Hi Just reading about pancreatitus because my sister just called me from the hospital with it. They said it is usually from alcohol. She has had maybe 9 drinks her whole life. She is 52. She also has m.s. About 3weeks ago she was given a blood transfusion for bleeding ulcers. I know it sounds funny but really her and I don't drink. Can one get pancreatitus from a blood transfusion.

I don't know where else to post this question.

Thanks for any info. Judy
Date: Sun, 28 Jul 2002 16:25:51 -0400 (EDT)
Joey's Replies,Excellent

Comments-,Today, I took my husband BACK to the hospital for a second time. Back on the IV/s and the pain med's. I was a little more forcefull this time and said..........I want to know what is causing this and Im not taking him home untill he is better. I heard about several tests.......IVP.....chroprahiam (sp?).. ERCP.....also most people don't think about it but a colonostopy should be done. So I will keep checkin on this site. Please.......keep up the information. We need to find a cure for this or at least a way to live with it!!! S Lee
Date: Fri, 19 Jul 2002 22:10:58 -0400 (EDT)
Joey's Replies,Excellent

I suffered from Pancreatitus for about a year after my daughter was born (1999). The doctors told me it was acid reflux and then said it was a hiatal hernia. I found that it was'nt when I had to be rushed to the hospital screaming all the way and trowing up my own waste. I had to get my gall bladder removed. I had had this type of episode before but neverthat that painful.

This page was extremmly interesting. I wish I had know about it in 1999.
Date: Tue, 25 Jun 2002 18:43:02 EDT
Subject: im not sure the doctor knows for sure

im 30 years old and i have pancreatitis and the doctor says its from drinking. i never experienced pain like this before in my life. ive been in the hospital twice now since they have figured it out. both times for a week. originally, when i went there i was told i had a bruised chest wall. well that still didnt explain me vomiting.

what had happened was someone pulled up outside of my house blowing the horn caused her boyfriend or husband was beating her up so i ran out of my house not knowing what was going on and as i walked out the door and went to turn i slipped on my welcome mat and hit the left side of my body(pancrease) and thats when i had a pain on my side and in my chest and back so bad i didnt want to breathe cause it hurt so bad. well the doctor said it was a bruised chest wall and gave me meds. and told me to come back if the pain still accured after so long.

well low and behold awhile later after laying around in pain for so long i started to vomit profusely to the point i could not stop. and at this point all it was was bile no food no water which misstakingly i was drinking thinking that at least i wasnt dehydrateing.(BIG MISTAKE).

after all they finally found the problem and treated it correctly. that was my first week in the hospital. i have two boys and im a single parent. the last attack happen a week ago and finally i got to talk to a gastroligist and he said i could not drink for six months and i could still have a attack .

my doctor prescribed meds. that my insurance didnt cover so he told me to buy pepcid ac. to protect my stomach from things like fatty foods. which also advised me to stay away from but i am not losing wait but the blooting in my stomach is unbelievible.i dont know what to do or who to believe because of the original diagnosis with the bruised chest wall.

but if there is anyone to help me please do. i really dont believe it has anything to do with alcohol. maybe dehydration but not alcohol and i have my reasons.i quit for 3 months and drank for 3 before i had another attack but i drank responsibly for ex. i ate and drank alot of water also. and did not consume an abundance of acohol. and it didnt bother me until and it only bothers me while im on my menstural flow. if that makes any sense.

please contact me if you are experiencing any of this. wondering hopelessly in pa
Date: Tue, 18 Jun 2002 00:02:03 -0400 (EDT)
Joey's Replies,Excellent

Comments-,I 'm very worried & stressed due to frequent pain in upper stomach \hernia causes sharp penetrating pain through lower back,even water makes me burp so hard & loud that it irritates my throat,waiting now on a barium enima which is six weeks away,had an upper g.i.two years ago,everything ok,had ultrasound on gallbladder also ok.

occasionaly over the years have endured same type pain,but it seems to last longer now,taking nexium \ranitidine seems to help but i need answers to what's causing this pain.I'm 56 years old and yes I am a worrier of everything,but now I'm stressed to the max.

and despite the antidedepresant "remeron" one at bedtime to help me sleep nothing works for me anymore,also my meds. include xnax,two different types of bloodpressure pills "triazide &cozaar plus ogen for menapause.just finished taking cipro intended by doctor to clean up infection thought to be diverticulitus,just finished taking ten days supply still has the pain,no hope in sight, wondering if it's an ulcer.would love to get input from anyone suffering similarities.

Lynn the suffering lady
Date: Mon, 10 Jun 2002 21:29:48 -0400 (EDT)
Joey's Replies,Excellent

Comments-,I feel both releived and depressed reading here. I am 100% sure I have chronic pancreatitis, and have suffered on and off for years. The last year or so have been awful.

I have been treated like a basket case, Emergency rooms tired of me, luck of the draw doctors, pain meds and no answers. However, in my own research I understnad what is happening and needs to be done.

My problem is this, I am not a doctor, and having to beg the community sworn to helping just wears a person out. Why is this medical community so unwilling to help. If the problem is glowing in the dark, they are happy to help. What do you think this is leading to? It really frightens me. I plan to help myself, insist on help and research. I am able, but what about the thousands or more who cannot. This is so unacceptable, isn't it?

Winnie at
At 11:40 PM 3/24/2002:

hello my mother is in the hospital right now as i,m writing .The doctors say its pancreatitus but have not aclue whether its acute or chronic. She is in really bad shape .She cannot throw up when she feels nausea and right now she feels like death. The nurses just keep telling us it has to run its course.

I asked the doctor if she could die and he said yes but he also he added you can die from a fever too.Idon't know what to do about tryin to help .She does have good insurance.What would be some good advice for doctors who know how to treat this?My mother is in really bad shape please mail me back

Best advice I can give you is to ask the doctors if they have consulted with specialists in Pancreas and if they haven't, INSIST they do so. One place to start looking for specialists,I think, would be Hahnemans Hospital in Philadelphia, or maybe the Mayo Clinic in Minnesota.

I'm sorry I can't be more specific but that's the best I can offer. My only experience with pancreatitis was through my friend Joey, you might have better luck searching if you tried "pancreatitis" ("is" instead of "us") and a more specific search like "specialist in pancreatic diseases".

Good luck to you and your mother.

I'll be thinking of you today.

Thanks your note,


Joey's Replies,Excellent

Comments-,I also had an acute attack of pancreatitis 18.2.2001, Luckily I had medical insurance an was taken on a private ward immediatly though they were giong to give me a pethadine injection and send me home to return the next day.
As it happened I was in intensive care the next day and for 7 days I had drips, catheter,and hydro-oxygen, plus nasogastric and a syringedriver giving Morphine for pain relief.

I was convinced I was dying and wanted to the pain was so bad. I was told I had an extra lipid and the Bendroflorazide medication for high blood pressure had clashed, I am told I should not have this desease again as long as I take my prescribed medication Ciprofibrate 100mgs at night. Reading the letters above I feel so lucky.
Joey's Replies,Excellent

Comments-,I was diagnosed with pancreatitis when I was 20 tho it started years ago about when I was 12. The Drs thought it was an ulcer since I had alot of stress in my younger years. I beleived them untill the acid reducers didn't work .Tho I knew I had a problem when I was about 14 and constanly throwing up. my foster father was holding my hair back while I died in the toilet, no one knew (knows) the pain,

I even remember throwing up one day and was amazed at what came out of my throat ...a long and thick blod clot which was about the size of my throat !!! Right then I thought please someone help me I m dying. I went to the hospital again they could,t explain .they gave me Demeral and phenergan and what (they) call steak and potatos which is >>IV's<< let me go like a day later .

Stil every 2 months back in the hosital untill one day I find out that my older sister has pancreatitis and then found out that i have some aunts with it also. well i guess now they want to check me for it and YES i had it also,I had surgery for mine and it seemed to work for me ...I cant remember the name of it but they cut my pancreas open and tied some intestons to it to slow it down ...that seemed to help me thank goodness!

But then my son at the time was 5 when he started the same symptoms took him to the er room and told them about the Family case of pancreatitis after one test they found it the amalse and lyapase were sky high so he now has pancreatitis we've been in and out of the hospital about once a year we stay about a week until this year 2002

He is now 10 and we have battled this alomost every month , an ulcer and some knind of bacteria called H-Phyloria I think that spelled right , Now he on viokase 2 to 3 pills everytime he eats which i can't tell is working.. he can't eat pizza, tacos or school foods. anything a 10 year old would love to have cant have.

I'm just tired of seeing my son on Demeral and phenergan.

PLEASE be careful whn tey have on anything like Demeral and phenergan because before my surgery ...they put me in the hospital and i was about 130 pounds when they put me on a demeral pump machine which let me control the pain meds going into my iv's when i needed it i would push the button and if it wasn't time it wouldn't let me have any meds but if it had bee like 10 mins since pushing the button it would give me my demeral UNTIL after like 15 days being in there and on only iv's for food guess what i lose alot of weight and they NEVER changed the demeral to the weight i lost WHICH led me into a ceaser (dang i cant spell) (seizure) and a blood transfusion the Dr let me overdose myself by not changing the demeral to a lower dose to match my weight yeah thanks doc i know..Please keep this in mind if your hospitalized

I have no answers only what i have been through. I could go on and on about this but will leave my E-mail address in case someone has q's for me Its
Joey's Replies,Excellent

Comments-,Hi, Well I got to this web site to see if I could find anything else on chronic pancreatitus. I have been diagnosed with this awful disease since 1997. I was 29 at the time.

At the time I was diagnosed, I was going through a stressful time in my life. Although, I was a very energetic female, who worked out regularly and ate healthy foods. It all began with a terrible pain in the center of my stomach between my chest bones. It woke me up in the middle of the night and I got up and took some tylenol, of course that did not help, so the next day I went to the drug store and bought some zantac thinking maybe I had an ulcer with all the stress I was under.

Well, during that day, it got progressively worse and I went to ER, where they diagnosed me with acute pancreatitus. They sent me home with information to see a Gatro doctor that next day. He then saw that I was not in good shape and admitted me in the hospital with IV fluids and pain meds for seven days.

He then did an ERCP and a CAT Scan and a few other tests and all he could tell was that my Liapse were constantly elevated, regardless of what I did. After the hospital visit where he would basically shut me down for a week, they would go back down but never to a normal level.

After several trips to the hospital he then flew me to the University of South Carolina, I am from Ohio. There is a doctor there by the name of Dr. Hawes, he invented the Spinterotomy. He was suppose to be the best.

I was sent there where they performed an ERCP and a Spincterotomy (where they put a slit in your pancreatic duct and bile duct in order to let bile flow through cleanly, Dr Hawes confirmed that I did in fact have chronic pancreatitus due to pancreatic divisum, I was evidently born with deformed ducts, that did not allow proper flow of the bile.
He then put a stent in and after that surgery my levels elevated to about 20,000 and they though that I wasn't going to make it. It actually was extremly hard for my pancrease to go through that, and it put me into an attack.

Well I finally got well enough to get back on a plane and come home (wheel chair and all). Once I did arrive home, my doctor removed the stent and hoped it would remain open for proper bile flow. Well, it did not and I was back to square one.

My doctor then tried a drug called Sandostatin back in 99. I was giving myself three shots a day and it did maybe work for awhile, but eventually it stopped working.

I was then sent to the Cleveland Clinic for a Celiac Plexus Block. This is a deadining of the Pancrese nerves, it is done by laying you on your stomach (you are awake I might add), they then feed two wires through slits in your back that once they feed them through, they watch it on a TV screen going into your body, once it gets to those two nerves, then your real doctor comes in the room (the individuals feeding the tubes I found out are interns)and your doctor then injects a dye that kills the nerve, the pain control is suppose to last for about six weeks; that's if you have no complications.

Nicki Herman
Comments-,Date: March 6, 2002

I couldn't believe it! Am I actually reading this? There are people out there as young as I am that have this awful disease?

I am 23 and in a world of disaster. These are supposed to be the best years of my life! It is now going on year number five and no relief in sight.

It all started as a pulled muscle the doctor told me, ya right! I ran track, healthy as one can get, lifted weights and was told it was a muscle. Time went by and so did the awful pain. I was then referred to a surgeon who in turn did no tests, assumed that it was muscle/skeletal and began steroid epidural(sp) in my back! I believed this crock!

Obviously the pain didn't stop and eventually ended up in the ER. I ate Chilli the night before and went to bed thinking I was dying. There they automatically pumped me full of drugs so I then had to wait hours for any kind of tests, surprising?

I had the test done where they track bile that moves through your gall bladder with dye. It wouldn't go through at all, so they yanked that baby right out, no explaination, they said just hope for the best. I got sicker and sicker and sicker.

I was told by three different docs that it was all in my head due to STRESS?! I could not believe what I was hearing, all in my head? So I quit seeing doctors all together until I literally thought I was going to die.

I finally met a doc who believed me and I had every test: MRI, CAT, bloodwork, all normal. I was finally referred to the big boys in Indianapolis where I have now had two ERCP procedures and no sucess. They say my pancreatic vaulves are closed,sphincter of oddi, and have tried to open them twice, no go.

I will be going back in April where thay will be doing a similar procedure to see if I have chronic pancreantitus, oh boy.

I came here kind of looking for any kind of answers, so I thought I'd tell my own. FYI: symptoms include: Severe nausea or vomiting while or after eating, intense pain in right upper quadron, like a knife but sometimes it changes to a dull ache, more pain than not, have to urinate alot, very bloated, weight loss, I'm down to 88lbs. good thing I'm short! You can't sleep, do you know how long it's been since I've had pizza?

It is very hard to hear there is no real cure and I no one will be straight and tell me if this could kill me or the long term side effects, doctors don't like to deal with it seems. Good luck to whoever can benefit from this, it's nice to know I'm not alone.

My advice to everyone is not give up, it is hard to say and even harder to do, but maybe with all our suffering, someday we will be the ones that helped contribute to finding a cure for this relentless disease.
Date: Sat, 23 Feb 2002 17:39:26 EST

Like many of the other letters on your Page, my wife has been diagnosed with chronic pancreatitus. It seems the pattern here is that doctors can never tell you what CAUSES the disease. Which leads me to blieve that if they cant determine the cause , then how can they cure the disease.

Medical practice is truly aTRY and ERROR method of healing. But, I believe that patients, people with this awful disease can find a cure. Web pages like the story of Joey can bring us together to find out what worked for others. We must not give up hope.

There are a few things my wife is trying that may help others. She is on a medicine called Sandostatin, which is an injection that slows down or stops the use of the pancrease,which is causing the pain. Now that she is relieved from the pain. She can get off most of the pain meds. that have severe side affects, if taken for a long period of time.

But now she needs something to do the job of the Pancrease since it has been shut down. She now takes High doses of Viokase enzymes, which replaces the natural enzymese her pancrease would be making.

Now I have to say, this is only controling the symptoms, and not the cure. but she is doing better right now, than she has in years. So while its under control this is where we are researching for ourselves for the cure. We have found that brussel sprouts is good for the pancrease. so now she eats them religiously. She also tries not to eat anything unessecarily, only enough food in small portions at a time to nurish her body. She stays away from greasey food , or food with fillers.

I realise this info might be basic, and others may know alot more about helping to cure this dreadful desease. But if others would take afew moments to send in info that might help us all, together we may all live abetter life. Thanks for anything you know to help, and God Bless ALL of You!

Chuck and Karen
Joey's Replies,Excellent

Comments-,Part of the problem here in locating information is the spelling of "pancreatitus" instead of "pancreatitis" (proper with an "i" instead of a "u") I misspelled it and ended up here.
Joey's Replies,Excellent
Comments-,Hi, I am a 49 year old male who has been fighting chronic pancreatitus for the last six years. it started ouyt being acute, and now is chronis.

Everytime I have a pain attack, mt amalaye and lipayse levels shoot, so the only alternative os to put me in the hospital and give my pancreas a rest. I am put on IVs, and given dilaudid every two hours for the pain.

This usually last for about three or four days. But the last episode resulted in a feeding tube being pushed down through my nose into my stomach so that I could be feed. I am still on a strong dose of vicodine that I have to take everyday in order to keep the pain down to a minimum.
One surgeon told me that I was dying from pancreatitus, and I told him that he was full of crap, but I know in my heart that someday it will come. My desease was caused from drinking, but I had quit drinking for a year before the pancreatitus showed up.

To look at people with this desease, you would never know that we were sick.But we are, and to try to make someone understand the degree of this desease to someone else is sometimes very difficult.

Now the surgeons have found a tumor in my pancreas and are considering putting a stint in so that my pancreas can drain better. It is a fight to the finish, and everyday I tell myself that I am going to win.
I hope that this information will help some of you. Also I was put on a diet and drank nothing but a liquid prescribed by my surgeon for thiry days. No food, just this liquid called Subdue. It will give you the things that you need for your body, ,but will also keep your pancreas from working, therefore giving it a rest so that it has some time to heal.

This subdue is 16.00 an eight ounce can or 400.00 a case. There are organization in your home town that will help you pay for this. If I can be of further help please feel free to contact me. Thankyou Jim Elliott
Date: Sat, 9 Feb 2002 22:58:30 -0500 (EST)
Joey's Replies,Excellent

Comments-,My 17 yr old son went to ER one day that changed his whole life. Pain so bad and intense, throwing up like you are throwing up your stomach, he was diagnosed within hours of being there, admitted, heavily sediated with pain meds and nausea med, we spent the next 9 days in ICU with almost every organ affected, and the next 6 wks in the hopts, then came home with a drain tube because a cyst had formed by the pancreatics.

We then have visited the hospt for every mth for the next 7 months, each time we would be admitted with reoccuring pancreatitus, and stay in hospt for 3-5 days. Then we found out after havingt CT scan, ERCP's and every test known to man that he may have pancreatic divism, and also on one trip they did take out his gallbladder too, no difference.

Nick was born this way with pancreatic divism, a birth defect. We were referred to Dr. Geenen in Wisconsin who is considered the best in the world at putting in a stint in the pancreatic duct, so we went, the procudure didn't work 2sx, ended up going to surgery, sewing open the duct. No problems for the next 7 mths. And the pancreatitus is back 4 trips and 2 hospt stays in 5 weeks. Looks like another trip back to WI, well see what they want to do this time.


Date: Tue, 14 Aug 2001 21:03:15 EDT
Subject: pancreatitus in 14 yo girl

Hi, I read your excellent article and I am so stressed out with worry about my daughter- she has been having these attacks for years- she NEVER drank and she has no gall bladder problems, she has suffered pain for like 8 years undiagnosed-stupid dr just said it was nerves or migraine of the stomache!!

her current dr. Katz of new englang floating, boston mass.mentioned that chronic unexplained pancreatitus can be a mutation of the cystic fibrosis gene and he has tested her for that.

there is a form of cystic fibrosis that is teen or young adult onset and it attacks the pancreas by filling the ducts with the mucous that fills the lungs of people with the full blown cystic fibrosis, have you any info on the treatment, such as what kind of diet etc, he just told us stay away from milk,dairy,citrus, fats, and tomatoes, oh yeah she also has acid reflux.

I'm looking for nutritional info, diets and vitamin,herb type cures, any help will be greatly appreciated.

her name is Jasmine from fall river mass if you wanna pray for her, thanks :) e mail me at

04:20 PM 10/22/96 -0400


Comments-,I have a wife with "unexplainable pancreatitus." I guess that means they don't know how she got it, or where it's going to lead her. I would be interested in knowing if anyone has provided you with more medical data on this disease.

Also, I rated this as excellent, which is usually a rating I reserve for "couldn't be any better." In this case it's true because it was the only thing I could find, but, I would sure like to have more information and know if anyone contributed any meaningful comments. Mostly, I'm very pleased to see that someone would take the time to do something to try and reduce the suffering others will have to go through, even though it's too late for themselves. - Syd

My Answer:


I'm sorry I don't have any more information about Pancreatitus than was in "Joey". Anything I did say at this point would be the words of an experienced ignorant.

However I did a search using HotBot (after unsuccessful searches with a couple other search engines) and came up with something that looked promising. (I ignored "Islamic Medicine: )

Good luck to you. Having had a number of serious medical situations in my own family, I empathize with the position you're in. Dunno if it will help but I have another medical paper on the Net:

that MAY be of help (it talks about medications and doctors).

Good luck in your searches. Sorry I couldn't be more help.

Hi Syd,

I got to thinking last night and remembered a program I wrote last year that put together a bunch of medical numbers from the NIH (National Institutes of Health) and elsewhere into a searchable database. I contains over 3,000 entries If memory serves (it often doesn't).

Anyway I searched it this am and came up with:



NIH Publication No. 92-2751

for stuff related to the disease of the pancreas. I haven;t included the descriptions (no clipboard capacity in my prog). Anyway it's a place to start.

FYI, the original search for "pancreatitus" was fruitless, but "pancreas" turn up lots of hits.

Good Luck and hope this helps.

My family Dr. told me to quit drinking, and left it at that. Well after 8 months the pain is back again, this time I am seeing a surgeon who is going to try and figure out what is causing the pancreatitus, thank God for him. He said that there are at least 21 different causes of it, and he figures that I might have an ulcer which is causing the pancreas to get inflammed.

Wish me Luck, as I write this I'm in considereable pain, feeling real weak, haven't been able to eat for 3 days, and hoping that the Dr. finds the source of this pain. Tks for your article on Joey, now i know I'm not a wimp for moaning in pain every now and then.

Yours sincerely,

My Answer: Barbara,

Thanks your comments about "Joey". Sorry to hear about your bout with Pancreatitus. I'll be think of you for the next few days. If you have no objection, I'd like to post you note at the bottom of Joey.

Good luck.

Date: Wed, 21 Jan 1998 16:25:19 -0800
Subject: Pancreas

I appreciate the information found on your web-site. However, I wonder if you could please take a quick moment to answer a rather ignorant question: exactly where is the pancreas located?

I have been having persistent discomfort in the right side of my abdomen. I am a 45-year-old female and I haven't been able to get very far with three different doctors. Ultrasound taken a few months ago showed that I have gallstones, which I have been aware of since 1987. When my abdomen is palpated, I don't feel real pain, but virtually every day, I suffer from a burning-aching sensation on the right side of the abdomen, in the area right across from my belly-button.

Since I am not being taken to seriously by my doctors, I thought I would go on the Internet and do my own research. I am certain you have a ton of e-mails to answer, but if you have the time, I would certainly be thankful for any suggestions/insights you may be able to share.

A Note From The Web-Surfing Penguin!

My Answer:

If you know where the kidneys are I understand the Pancreas is located between them.

Click here to see the location of the Pancreas (Henry Gray (1825–1861). Anatomy of the Human Body. 1918.).

Maybe that will help a little. My wife has suggested that you probably should see a Gastroentrologist (sp) (someone who specializes in that section of the stomach).

Sorry I can't be of more help.

  • ( I have received email from people who have someone close to them suffering from Pancreatitus. Please, please, please don't take anything from here to indicate that Pancreatitus is a precursor for cancer or is somehow always related to heavy drinking or is necessarily fatal. I know of no evidence for that nor is it something that I believe.

  • If you arrived here using a search engine looking for "Pancreatitus", you may have better results (find more hits) using "Pancreas". I wish you luck in your search.

  • For more information, you can try the National Institutes of Health in Bethesda, MD. Try this number 301-654-3810 and ask for Publication #92-1596. )

    I found this on the Naturopathic Roundtable And I copied it here for any who may find it of value.

    Posted by Don C. Cheatwood on January 04, 1998 at 00:21:38:

    In Reply to: Re: Pancreatitus Question posted by John Wilkins on August 24, 1997 at 02:46:19:

    I have suffered from Acute Pancreatitus since may of 1996. I was hospitalized and required surgery to remove the gall bladder. The doctors said the stones had passed stones into the pancreas. In October of 1997 a more severe attack occured causing a suedo cist (a big blister containing enzymes) 2"x4" that is slowly decreasing in size. Death can occur from these severe attacks. The cause was believed to be sand, particles from the gall stones from the original problem or sludge that obstructed the pancreatic duct.

    I am still recovering and I have taken the time to do some research on Pancreatitus. I have never drank alcoholic beverages so this may be passed down.

    If either of you have access to "PROFESSIONAL GUIDE TO DISEASES", please look on pages 704 thru 706.

    There is a book by Dr. James F. Balch, M.D. titled "Prescription for Nutritional Healing" that contain very helpful information on pages 418 and 419.

    Pancreatitus can be either acute or chronic. Acute Pancreatitus usually causes severe pain that comes on suddenly starting in the area near the navel and raiating to the back. Chronic Pancreatitus is often an alcohol-related damage to the pancreas.

    If I can help further, please contact me through:

    Date: Sat, 15 May 1999 13:49:18 -0400 (EDT)

    Joey's Replies,Excellent Comments-,I was stricken with unexplained, severe, acute pancreatitus. October 16, 1998, I had already been to my family phys. his explanation for the severe pain was STRESS.

    I looked him right in the eye and said,"Your'e telling me that stress can cause this much pain." He was shocked to hear such words comimg at of my (the patient) mouth.

    He gave me a prescription for prilosec which is used to reduce stomache acids. I took and had it filled in complete dissbelief that, that was my problem. That night i ended up in the E.R. I told the doctor there that i was not leaving until he found out what was really wrong with me. With confidence he told me not to worry. Mercy S. in Charlotte, Meck. Co.

    That night i was put into the hospital, put on demoral/finnergan. There i stayed for 27 days. Doctors were stumped, every test they ran came back neg. Never did find out what caused it.

    I suffered several complications P.I.C. lines and then experienced a Groshong Not fun. Groshong is a surgical procedure of an insertion of a tube in the chest, 1 inch cut and stitches required. Now i had a feeding tube in my chest that led directly to one of my heart arteries.

    Not allowed to eat they started me on TPN. and lipids so my body would not fall into a starvation mode. Weak and tired. I was put on coumadin-blood thinner, due to the P.I.C. line in my arm that had gotten infected in a matter of two days. Had minor surgery of my arm to remove the infection, so it would'nt spread. Lost the use of my arm and ended up in physical therapy.

    Demoral/Finnergan doses now doubled and still having pain. When my arm cleared up, i ended up with a bladder infection. That usually is'nt a big deal unless your on coumadin and the doctor puts you on the most common drug for U.T.I. (Urinary Tract Infection) which is Cipro. Well when taken with a blood thinner it can cause spontanious bleeding from the kidneys. So now i was urinating blood frequently. Which required a Plasma Infusion and a whole blood infusion.

    I was so sick and tired and drugged up with all of this going on, I thought i was going to die. Then things began to look up. Now it was time to go home, I continued my fasting during the day and I.V. feedings through the Groshong at night while I slept. I was sick with this for months, but i survived.

    I do believe i experienced every complication possible with my Pancreatitus Most cases are'nt this severe, but I'm still left to wonder, will I ever have to go through this again? Not even the doctors know -- Marcia

    Date: Mon, 3 May 1999 23:40:03 EDT
    Subject: Pancreas Hell
    I was disgnosed with pancreatitus in Dec. 1996. After repeated Dr. visits and beggin gfor mercy, an ignorant general practioner (thanks to the insurance company) finally sent me to a GI Specialist. He immediately through me into the hospital. He had dimorall (sp?) injected into me and for the first time in 3 weeks, I felt no pain.
    The first night, my blood pressure dropped to 52/48 and my pulse was at 95. I was almost gone.
    After steadying my and testing me like crazy, I was told that I had pancreatitus and that the only thing they could do for me was to shut it down and wait it out. I was amazed that that was the best they could do in 1996! With little knowledge of the pancreas I had no idea what it meant.
    After 3 days of being drugged out of my mind, I wanted information and the nurse's had nothing to offer but a medical dictionary. The description of this disease scared me to death! I couldn't believe that at 25 years of age I could be suffering from something like this.
    The doctor's were and are still baffled and have no idea what causes the pancreas "attacks" that I suffer from. Removing my gall bladder didn't have any effect on it, like they'd hoped. I have resided to the fact that for the rest of my life, I will have short, yet extremely painful, attacks of what is now called chronic pancreatitus.
    I am curious to know if you have any info on the long term effects of pancreatitus sufferers. I cannot believe that my pancreas is not causing harm elsewhere in my body. Knowing it's functions and the bile that it produces, I know it can actually digest internal organs. This thing has to be causing damage.
    Any info or any ideas to where I might search? It was so nice to see things about pancratitus. I have for so long felt like I was one of only a few in his country suffering from this because there really is no where to get good info.

    I wOuld not mind at all if you included my story in Joey's Letters. I would actually love to be in contact others that have been affected by this disease.


    "Comments-,I have info on this subject that I would like to share. If >interested contact me."

    End Joey's Replies

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