Chris' Story

My name is Christopher, for gender assignment, always known as Chris, and also by a few polite and not so polite nicknames as well. I was born in Christchurch, New Zealand and although I travelled extensively early in adult life, I have always returned to my home here in NZ, surely one of the sweetest spots on Earth!

I always said I had the constitution of an Ox. I seldom got the flu and never actually took any sick leave from work at anytime. I spent a lot of time working in the "bush". This is a term used in NZ and Australia for working in remote locations, and quite often under appalling personal conditions. From exploration Diamond Drilling at 3,000 metres [5,000 ft] constantly in cloud and/or snow, to working in the Gibson Desert in Western Australia Exploration Percussion Drilling for minerals. I drove trucks, worked in mines, did road construction, all sorts of things and loved it all. I had so much fun I never managed to get around to getting married, but then sometimes these errors occur when you just don't realise it.

I never had a lot of money, but somehow I always KNEW I would be retired by the time I was forty, funny how things work out sometimes.. EH?

I turned 40 on the 4th of May 1995. On the 9th of May 1995, I was driving a Wastecare Bin truck. I skipped lunch, just didn't feel like it. Instead of hanging around in the afternoon to clean out the truck and pick up a little over time, I asked the boss if someone else wanted to and I went home early. Nothing really wrong, just not hungry, which was very unusual for me, but probably just one of the FLU bugs that go around. I just sat around at home where I was staying with my recently bereaved father who wasn't managing at all well on his own. After 3 hours or so, I decided I would just go to bed real early and get plenty of sleep and that would fix the flu problem "it must be". Before I went to bed, I made sure I ate my sandwiches I had cut for lunch, you know, just to keep the strength up to fight the flu. I lay down. I closed my eyes. About 10 minutes later it started.

There was a fiery pain in the stomach, like a real hot iron ball rolling around in the stomach. After about 30 minutes of this, I developed an alternative pain, a serious stabbing pain in the stomach. Then came the vomiting, that lasted for as long as there was a single drop of anything in the stomach, maybe 10 or 15 minutes. Then the dry retching, you know, when you need to vomit but there is nothing left? Well, that probably lasted about 30 minutes and really beat me up from the inside out. I got in the shower and ran HOT water straight onto my left side and it eased the pain, just a little, that was about 20 minutes. I went back to bed, I am not a wussy girly thing, I am a REAL BLOKE, and I wasn't going to go under to "a little pain". I tried to ignore this pain, by sheer force of will. I rolled over, I rolled over some more, I just couldn't get comfortable. After however long that was, I got up again and got back in the shower for another 20 minutes, and a little relief. I started to think their might well be something wrong, but I have the constitution of an ox, and there couldn't be anything seriously wrong with me... it will go away shortly, surely??

I went outside into the cool air of the night and walked around, quite fast, no, that didn't help either. I can remember lying down on the lounge room floor for a while in the fetal position and that didn't help, I finally think I was realising that there was something wrong with me that a good nights sleep was not going to cure. I called the after hours doctor…that was a waste of effort and 30 minutes trying to get sense out of them, I think I was sort of coherent, my dad thought I was OK, just in pain. I decided if I was sick, I better not drive and I had better get an ambulance, I would go to the hospital and they would cure this pain and I would come home and everything would be fine. Looking back, I must have conceded I was BAD because I would have driven myself to the hospital otherwise, I have done so since, in similar condition and it isn't that difficult, so I must have been bad that night.

The ambulance arrived just after 11 pm and had me in Christchurch Hospital before 11:30. I had described the symptoms and told them my life story and cursed the driver every time he went over any bump at all. I didn't know it then, but if I wasn't such a REAL BLOKE, I could have had a pain shot in the ambulance.

I actually walked into the hospital, no worries, didn't want to look like a weakling, right?? Well, when the pains were described, and vomiting etc, they knew it was an acute pancreatic attack. The put me in a room at the side, jabbed me ITB, and stuck up some fluids, and then explained the fluid balance and inserted a catheter. Once they gave me the pain relief, they could do anything they liked with me. I was so grateful for the relief from that pain, which I wasn't going to argue with anyone with one of those wonderful needles in their hands! They also put up a Pethidine PCA, such a wonderful machine when used to its maximum efficiency.

Then they trundled me off to Ward 23. I remember waking up at times, I was in a bad way, and I don't know how long I was there, a few hours or a day and a half. I do remember waking up and looking across the 6 bed room and seeing a guy sitting there in the dark and looking back at me, initially, I thought I would be in trouble for keeping him awake, after all, I had never spent a day in hospital in my life and this was only the second ride in an ambulance!

The next it was daytime and they moved me from Ward 23 to Ward 15. They put me in solitary; I was alone! I still had no idea what was going on, but I felt A LOT better, but I didn't know that I was on the Critical list for the first week. I was just lying in bed sweating, and they refused to feed me or even let me drink. I had never heard of NBM!

They wanted to do a CT Scan. Two orderlies came and got the bed, portable oxygen, the fluids and PCA, and the catheter bag, and anything else attached and we were off. Whenever I went anywhere, I never left the bed. I got to the CT Scanner, they panicked, they thought I might die getting on or off it. They did the scan, and then when they injected the contrast dye into the IV line, there was a strong metallic taste in the mouth and a rapidly distributed warm feeling throughout the body but especially the anal sphincter. Of course that made me throw up, fortunately there was nothing in the stomach to come out but I was in trouble again, and there was a real panic in the scanner room as they didn't want me to die there, too much paperwork for sure!

Next trip was off to the Ultrasound Scanner, you know, where they take the pregnant women to have a scan. Same machine, except they were looking for gallstones. They looked for more than an hour, but no matter how much they pushed and prodded me, they couldn't find a single gallstone. They were still looking for a cause for this attack. I am an alcoholic by my standards, if not anyone else’s. I never thought of myself as a heavy drinker or even a bad drinker, but I worked hard and played hard and drank hard. I mean often a man is measured on his ability to hold his liquor, and I could hold more than my fair share of it, and a few others as well. BUT, I never missed work and I didn't have to start drinking, but if I got the taste for it, I drank a lot. The alcoholic definition I like is: The person who has a problem with alcohol. I asked myself the question one day, do I have hold of the booze or does the booze have hold of me?? The latter was the answer, so I just stopped drinking, no problem and that was in September 1993, which was a full 18 months before this pancreatic attack, so alcohol clearly isn't the cause either.

Anyway, I never knew you could change the sheets on a bed with the person still in it! I also didn't know you could have a bath in a bed from two nurses while you were still in it either! But, I learned a lot. The specialist came to my room about the second or third day. He told me I had pancreatitis. I asked if they were going to rip it out, after all, that was what they did with the appendix when it played up.. no, he said, you can't live without one. It wasn't strictly true, even in 1995, but it was an extremely dangerous process and very risky with limited life expectancy then. He said just lie there and you will be fine. The nurses panicked every time I wanted to get out of bed. Now my sister is a nurse, although in another city, and I know they don't do or say things for fun, if they were worried, then I better listen to them and be guided with what they wanted. Not knowing the hospital drill, I never brought a bag with me, so no soap, no toothbrush, no dressing gown or slippers, you get the idea. So I gave them the number of a friend. He came in later that day, walked straight across the room and sat in a chair in the corner. Most uncharacteristic behaviour. I tired to ask things and be chatty; after all I didn't feel too bad now. But he got up after about 2 minutes and left, didn't say much at all. Later, when I said, "I must have looked like death warmed up", he said, "Not warmed up!"

Two weeks later it was back to the CT Scanner again for another try. The first one was too inflamed for a decent picture. I recognised the nurse…funny thing was, she didn't recognise me. She didn't believe I was the dead person they first brought in, I was starting to think this was serious and that I must have been very sick when I got to the hospital!

The amylase was 1600, not real high, but high enough, and the oxygen saturation was in the 40%s when I arrived at the hospital. The specialist told me it was a toss of the coin as to whether I should go into ICU or go to the ward and I had come within about two hours of dying or going into a coma.

When you have a serious acute pancreatic attack, you lose 1/7 of the pancreas you have to scar tissue through inflammation. 50% of people are put straight into ICU to be stabilised and 10% of people die, even in the best hospitals in the world because the pancreas is such a vital and nasty gland! Any pancreatic attack is not good, but a bad one can kill you, it is wise to try to avoid them at all costs!

I sat in bed sweating like a pig. I am 120 kgs [265 lbs] and lost 20 kgs in the first week, 30 kgs in the four weeks I was there, I don't recommend it. They brought me a fan and then one night shift, the nurse brought me some ice to suck on, it was wonderful but sort of sizzled in my mouth. I got through those three real quick and begged for more…no, she said, 3 an hour is your limit or you will get me in trouble. I am sure it wasn't a cost factor…surely not. NBM! That allows the pancreas total rest. As I understand things now, the Pancreas Gland is notified immediately, can be as quick as half a millionth of a second, that food has entered the mouth. The pancreas then commences production of enzymes and triggers of enzymes and notifies other organs that they have to do stuff depending on what food is coming. The saliva, stomach acid, pancreatic enzymes and finally the bile are all involved in digestion of food and the absorption of the nutrients as the bacteria in the small intestine work on food as it passes through to the large intestine. A real team effort. So NBM is the best first aid for an upset pancreas.

After the next 2 weeks on the seriously ill list, I spent the final week eating and learning that not all food was now user friendly. Any FAT but especially the animal fats of Sheep and Beef were the worst! Hot spicy food, Acidy food like apples or tomatoes, each person is different, but food selection will play a big part in all our lives after a serious pancreatic attack as well as no alcohol whatsoever, even cough medicine can be DANGEROUS for us.

After 4 weeks and 1 day in hospital, I finally went home. I was still sort of sore, a lot lighter but feeling not too bad considering I had nearly died. For the next 18 months, I spent a week in hospital every 6-8 weeks. Just ordinary pancreatic attacks, nothing too bad…just a drip and narcotic pain relief, and a week later I would be home again.

Then I had an interesting experience. I had been eating normally this day, no real problems, I think I had had some mince on toast and all was happy. About the third cup of coffee, I just got a sense that my stomach was full, that the last of the coffee only got down as far as the neck.. and surely it was coming back any second.. I made the dash, grabbed a large pot, and threw up everything. The strange thing was that there was no burning green stuff in it, It was actually quite pleasant and tasty coming back and I felt I could eat it again immediately with no problem, this was a bad problem, so back to the hospital again. Something different this time. I had the sense that the exit to the stomach was closed and the food just sat there, unable to pass. This turned out to be accurate, but no one had any idea WHY it had occurred.

One thing you learn when you go to A&E a lot, you get all sorts of info ready everyday to take with you. You know all about your bowel motions, what size, shape, texture, colour, smell and frequency. You know what pains you have had for the last week, where, when and severity. You have as much info about exactly what they ask every time, because you have been through it so many times before, AND, as others will tell you, it may be necessary to TRY TO CONVINCE SOME IDIOT in A&E that you are having a pancreatic attack. My consultant Surgeon Specialist told me very early on:

If the amylase is raised, then you are having a pancreatic attack!

If you are having a pancreatic attack, the amylase is not necessarily raised!

Now with acute attacks, certainly BAD ones and often-EARLY ones, the amylase is usually raised above a normal range that should not exceed 200, normally. With aggravated chronic pancreatitis, we have found that you haven't got enough of a pancreas left to generate the excessive amylase that less than wonderful physicians who do not understand pancreatitis, use this as the BIBLE mark to whether the condition is active or not. Many patients have suffered from the lack of understanding of this simple precept.

I spent 9 out of 13 weeks in hospital at this time in 5 separate admissions. The first gastroscopy panicked the GI who performed it. I didn't have the NG to keep the stomach empty before the procedure, even though I was NBM. Instead of the 200-300 mls of liquid he expected as normal, there was close to 2 litres [2,000 mls] and the suction overflowed its 1 litre capacity. I was awake for this and happy to be so. He pushed around and couldn't find the exit from the stomach to the duodenum; clearly it had closed off. He had prearranged a signal for me to get more pain relief in progress of the procedure and I used that, I was appreciative of being awake and able to know what the facts were, and he explained things as he went. I was very happy with his skill and the respect he showed me.

First job back in the ward was the insertion of the NG tube. It seems many nurses don't know how to do this simple procedure. The first one panicked and refused to try. She called a more experienced nurse who explained it all to me, gave me a glass of water, told me what I needed to do, and within a few seconds, it slipped through my broken nose and into the stomach. She had told me to swallow the water quickly and keep swallowing and it went in a breeze. At further times of insertion, I was able to help newer nurses to do this as I knew what my part was, and I was not phased by it, and happy to see them get it in first go, or second, no matter.

I developed Jaundice, the yellowing of the skin when the liver is unable to expel toxins through normal functions of the bile going into the small intestine. This lasted more than a week, and after seven days without food, they have to feed you or you may suffer serious organ failure. They used TPN to feed me and put in a central line, in the upper chest to a main vein. Of course this had to get infected with a hospital bug, so that was two weeks of six hourly IV Antibiotics to solve that problem.

Still there was the jaundice and the closed exit to the stomach. They believe that the head of the pancreas became inflamed and crushed the duodenum and also the Common Bile Ducts. Surgical Intervention was nearly needed to put a bypass on the common bile duct. I say nearly as it seemed to clear itself and resume normal function. One thing I have learned which is very important is that Doctors are ONLY practising medicine; they are not silly enough to suggest they will always get it right. There are a lot of moving parts to the human body and not a lot of it is fully understood. There are MANY people who go to hosp, are cured or not, and no one has any idea what was wrong with them. Only with the luxury of an autopsy can anyone be certain of many ailments or the causes or consequences of actions or inactions. We all know this is not an option with a live patient.

After this episode, I managed to have a full-blown attack in the ward of the hospital. The whole 9 yards, rolling around the bed screaming at 9:30 in the morning. I emptied the 6-bed room. I felt it coming, about 5 minutes warning, no pain, just a serious unwell feeling and a little nausea. Then it hits, the vomiting, dry retching, and that massive pain. They gave me 50 Pethidine IV, a very large dose, and had the PCA and drip there with 30 minutes. I had it for a week, then, to get rid of me, it had been 4 weeks and 6 days this trip, they gave me Methadone. The affect of this has changed my life, not necessarily in a good way. Too often at A&E and a lot of other places, people hear that M word and assume I am some sort of druggie trying to go straight, I hate that the most! Medical professionals always ask you about what the pain feels like to you..."Imagine the worst pain possible, then on a scale of 1-10, tell me how bad the pain is." Well, with 10 the worst, a real serious pancreatic attack will go into 8, been there a few times, that is screaming and rolling around the floor, Pethidine needed NOW. 7 is bad and ordinary attacks, Pethidine needed now. 6 is bad pain, I get this at home at times, where is the Pethidine? Methadone for me deals completely with pain 1-3, but not 4-5. I have nothing for that and usually get it daily. I use a lot of additional pain medications to assist and boost the Methadone, but I need well-honed pain management systems to avoid A&E trips, and to avoid going insane.

I sleep when I can. That is when I am tired enough, and when the pain is light enough that sleep can come. I sleep for between an hour and a half, and 18 hours, it just depends on when the pain wakes me. I live alone and choose not to describe my life now, as I want this to remain positive at least! In 1995 I tried to work as much as possible but it didn't work out, I was able to do a day or two here and there, but no job of any substance. I had a 52-week sickness policy, which I collected on as I was hoping that I would get better and be back in fulltime work SOON! No one fully prepared me for what has developed, frankly I think that was a good idea, because I doubt I would be here now had I been told at the start what I have gone through to date, I wouldn't have believed it were possible to survive this long and go through the things I have, still, there is always hope! I am a better person today than I ever was when I was HEALTHY!

It is often I won't leave my little flat for a week, just as well they still deliver milk to the door, I love milk! I have to go to the Chemist [Drug Store, Pharmacy] at least every 10 days for the narcotics, as that is the maximum supply they are allowed to dish out at a time. I have a bunch of other pills as well, too many to list I guess.

Pancreatitis is not an easy affliction to diagnose, as others will testify to. The incidence in the population is 1 in 5-10,000 so it is quite rare. Perhaps we can't blame GPs for not knowing anything about it, gee, a lot of Emergency Doctors can't spot it either, as others will often tell you. Of course once you go past Acute pancreatitis into Chronic Pancreatitis, the diagnosis becomes a lot more difficult to see, and you, the patient, have to rely on GOOD doctors listening to and trusting you, and taking your word for the FACT that you are having a pancreatic attack or episode. I, too, have been told categorically that I am NOT having a pancreatic attack, when I was. I know, and the next day you get the explosive diarrhoea, foul smelling, plus the elevated pains. It can be very frustrating when someone who does not know or understand calls you a liar. Fortunately, my principal consultant specialist that I have had from day 1 does trust me and respect me. He has given me his email and if I really need help, I just send an email and he tells me where to go and who to see, the red carpet goes out and I love him for it.

I have found that with the BEST medical professionals, the better questions you ask and the more knowledgeable you are, the more they will tell you and the better they will treat you. I should move to a warmer climate as cold temperatures definitely aggravates my condition, but I can't leave my specialist, he is simply too good and holds my life in his hands, I am afraid I won't find another as good, anywhere. Still, living with pancreatitis is possible, I have met people who have lived with the condition for 20 years and as much as 35 years, so it is survivable, so long as you obey all its rules. And every case is different, I have never heard of two cases similar, let alone the same. But when you start feeling sorry for yourself, look around, there are dozens of people, hundreds, a lot worse off than you are. Not working for the last 6 years is hard, Social Welfare is meagre but really appreciated, and there isn't an economy in the world that can dish out too much to any of the poor, no matter how deserving they may appear.

If you have this insidious affliction, then keep smiling, no one likes a misery guts! HAHHAHA

Also, when people ask, "How are you?" remember that they don't actually want to know, so say fine, and tell the truth the second time they ask.

If you know of someone who has this condition, a friend or family member, or workmate, then show a little compassion. It is hard to live with and if they say they are down, then allow them the space to recover. We have all suffered from not being able to show people a scar or wound or walking stick or an amputation, but that doesn't make the condition any less real. Sympathy is totally destructive. Empathy is wonderful, it is a little like understanding!

My principle attack had the Classic Symptoms: fiery pain followed by stabbing pains in the abdomen, with serious vomiting and nausea. Apparently it is written up in one of those home medicine books as such.

The Pancreatitis Message Board is a great place where we meet and support each other. Sometimes we go direct with email and it doesn't matter where in the world you are with this condition, that friendship and understanding is automatic if they have pancreatitis, and often it is simply talking to a fellow afflicted person that is the ONLY way you can get through the day to the next, but the sun rises and life begins again. People die in car accidents everyday, there are work accidents, wars, famine, terrorism, crimes, so many healthy people losing their lives, we really must appreciate what we do have and not regret that which we do not have.

My medical conditions I need to deal with are:

1. Chronic Pancreatitis: Serious PAIN 24/7

2. Constipation: Resulting from the large amounts of narcotics used for the PAIN

3. Insulin dependent Insulin resistant Diabetes: This is a poor cousin to the above two, which will determine all my actions daily. I know that Diabetes is a very serious long term problem, but then long term for me is 1 week, or 1 month at best, so yearly considerations just don't compute.

Hobbies

Computers

Living

Thinking about ways to do things better, all things.

Trying to find ways to make money or be employed, or be in business to generate a positive cash flow. Welfare is adequate, but being financially independent is possible, somehow, somewhere!

Canterbury Pancreatitis Support Foundation & Charity, Inc.

There is a song I half heard once; I think it was James Reign:

Everyday above ground is a good day

Every moment alone with you...

I just love that first line; I use it all the time!

Regards

Chris

Procedures

More than 30 CTs

4 ERCPs

Numerous Ultrasounds [Looking for Gallstones]

1 MRI

1 MRCP

5 Gastroscopies

A Few NG

Wards Visited since 7th may, 1995

14, 15, 16, 17, 20, 23, 24, 26.

They are usually classified as Surgical/Medical specialist Wards, or have been overflow to accommodate me when they have been full!

Glossary of Terms

A&E: Accident & Emergency Dept at the Hospital [US = ER/ED]

REAL BLOKE: Man's man [US = sort of Red Neck - not really]

ITB: In The Bum [Sometimes called IM=Intramuscular by Medical Professionals]

Pethidine: Meperidine Hydrochloride [Ethyl 1-methyl-4-phenylisonipecotate hydrochloride; a widely used narcotic analgesic.]

PCA: Patient Controlled Analgesic

Ward: Manageable Group of Rooms containing patients. 4 x 6 bedrooms, 6 x 1 bed rooms. [If they have wards, they must have warders, right? AND single rooms must be SOLITARY!]

NBM: Nil By Mouth. Nothing is to pass this way, no matter what!

CT: Computed Tomography

Gastroscopy: Insertion of a camera tube through the mouth into the stomach and into the duodenum.

NG: Nasal Gastric Tube. A small tube inserted through the nose and into the stomach to void the stomach of all matter (liquids usually)

TPN: Total Parenteral Nutrition - IV feeding mix.

Methadone: A slow release artificial opiate frequently used to wean narcotic drug users off the hard stuff.

ERCP: Endoscopic Retrograde Cholongiopancreatography - Same as a gastroscopy but goes further. Insertion of a tube through the mouth into the stomach and into the duodenum then up through the sphincter of Oddi and into the pancreatic duct. Biopsy is possible and dye injection is usual. Can cause pancreatitis [50% chance] MRCP is more favoured today.

MRCP: Magnetic Resonance Cholongiopancreatography - While in the Hugely powerful magnet of the MRI Tunnel, sound is made at various significant levels and images are manipulated by the computer and the less invasive result is achieved without the possibility of the physical harm of the ERCP.

Pancreatitis Message Board

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