Living With Pancreatitis
By Brenda Prentice
Key Themes: Pancreatitis, Depression, Health care, Health
, Social care
, Justice system
, Binge drinking
, Mental Health
, Support Groups
, Health care education for professionals
ALSO AVAILABLE IN PAPERBACK
This is a moving story of how an ordinary family learnt to cope with the incurable, debilitating and often terminal disease of Pancreatitis. The first symptoms appeared when Andrew was just fifteen and after 20 years he lost complete pancreatic function. This robbed him of his job, wife, home and self-respect.
Often mistaken for an alcoholic or drug addict, it was a constant struggle to receive any help. He could 'live on the streets as homeless without detriment, the same as any other homeless person'.
This resulted in deep depression, self-harm and several suicide attempts. There is no justice.
About the Author
Like many people, Brenda Prentice does not like to see injustice. When her adopted son, who was chronically ill with 20 years of Pancreatitis, became homeless, he was told he could ‘live on the streets as homeless like any other homeless person’. There was no help from Social Services, the Housing Authority or some Medics. She took up the issues with the Healthcare Ombudsman, Local Government Ombudsman and the Parliamentary Ombudsman to no avail and after five years all denied any wrong doing. The way he was treated brought further mental health problems of depression, self harm and attempted suicide.
Oh no! That feeling, the usual discomfort that I permanently suffer has just altered ever so slightly. I feel the blood rush to my face and that horrible realisation, that paranoia. My mood drops like a leaden weight and my mind switches so all that I can now think of is getting home quickly.
I just received the first signal from my body that I am about to have another attack of Pancreatitis. It could be a false alarm; God knows I have them almost every day lately. I just know by the constant discomfort, others may call it pain but I term it as discomfort, pain is something else that I have, it is starting to burn. It will eventually be a nagging burning pain situated on the upper right of the abdomen, which will gradually increase and then radiate across my chest and around to my lower back. However, before we get there I will have a lot more to get through first. “Here we go.” I am now feeling queasy and break out into a light cold sweat. I feel the urgent need for bowel movement but know that if I sat on the lavatory nothing will happen. Now I am burping, bringing up small amounts of acidic bile and have rampant heartburn. While I quickly clear my desk, a colleague looks across at me and instantly knows by the grey hue of my face and sweaty brow that I am beginning an attack. They have seen this before at my office. Previously someone used to drive me the twenty three miles home while I would throw up into a bag throughout the journey but nowadays I prefer to get home under my own steam (a mixture of retaining a small amount of dignity and preventing the problem of having to leave my car at work for however long). I have since learnt how to throw up and drive at the same time. Speed is of the essence though I am also aware that if I react quickly when I get the signals I can often make it home before the vomiting really kicks in.
I manage to pull up on my drive, throw open the car door and projectile vomit across the lawn. I haven’t managed to get my seat belt off in time and manage to splash vomit all over me and the car door, interior of course. As I get out of the car I find I can not stand up straight now because of the pain. I walk into the house stooped over and crawl straight up the stairs to the bathroom. I feel slight relief to be home now but that feeling of relief is over very quickly as I start vomiting again. When I have an attack I can see the layers of food come back up in the order that I ate them (often going back days) looking almost the same as it did on the plate. I remain in the bathroom about three quarters of an hour throwing up spending the time contemplating what had triggered this particular attack. Was it something I ate? Was it stress? Had I physically overdone it? I monitor the layers of vomit for clues as to when exactly my wonderful pancreas decided to start eating itself again and my stomach stopped digesting this time. Once the solids are up, I am now only bringing up clear frothy bile. I retire to my bed with a sick bucket and a large bottle of water. That will be me for probably the next forty eight hours or so.
NAUSEA and nauseam, It’s not the pain at the moment. My tormentor is nausea, don’t get me wrong, the pain is there alright but the nausea just takes over in waves for forty minutes or so and then I will retch and retch until I bring up some more frothy yellowish bile. This is followed by about five minutes of relief from the nausea which allows me to concentrate on the pain for a short time. A deep pain is now in the centre of my body like someone or something has bored a six-inch hole through me and is now honing it out slowly with some kind of cheese grater device. This deep pain radiates out into my chest and back along my shoulders and taut neck muscles and even down my arms. Apart from this I have pain (a secondary pain) from my abdominal muscles, as if I had done ten rounds sparring with Ricky Hatton while he practises his body punching techniques, a consequence of thirty-six hours of vomiting and retching. My joints all hurt from lying in the same position for thirty-six hours. Curled now in the often-used foetal position I have broken out in a drenching sweat and am soaking wet from head to toe and beginning to chill. I know I have to change my wringing wet T-shirt and pants but the malaise won’t let me. The malaise that has stopped me from getting up to pee to an extent that my bladder also aches, the malaise that prevents me from even changing channels (by remote control) on the ever constant day-time drivel pouring from the TV, a TV that I don’t lift my head to watch at any point in the forty-eight hours curled up in bed but find the sound comforting and a way of knowing what time of day it is. The shivering eventually forces me to slowly drag the soaked shirt off my back and change clothes for the second time this morning. My mind is in a sort of delirium state now. I go for the pee that I have been bursting for and notice that the colour is dark almost black and it reeks. This is a sign that I am dehydrating and I promise myself to sip more water. I am at that critical point where I have to make sure that I do not dehydrate or go into shock (as has happened previously) as that will mean hospitalisation which I like to avoid at all costs. Back in the foetal position the nausea is back with a vengeance following the exertion of peeing. My imagination starts to kick in as I mentally scream “For Gods sake give me a f***ing break”. I am screaming at my pancreas, a pancreas that I hold a vivid image of. He looks like a huge short fat slug with a head but no neck - a kind of Jabber the Hut character with a nasty looking face of that animated germ from a recent TV ad for Domestos or some toilet cleaning product. The face has a look, an indignant smirk that says belligerent all over it. It is green or grey or yellowish brown and the body is covered in weeping sores that occasionally erupt like tiny volcano spewing out steam and a snot-like consistency. Slimy fluid that the evil pancreas is completely covered in. This slime appears to be eating him like hydrochloric acid or something (pancreatic enzymes presumably), and it gently smokes. It coughs, wheezes and dribbles from its mouth and seems to have difficulties breathing or moving. Often I imagine this monster to be strung or suspended on taut piano wires attached to the linings of my rib cage etc and when I move or roll over this pancreas of mine rolls around, gets knocked about against my other internal organs bouncing off my lungs, kidneys, spleen and heart gradually coming to rest uncomfortably on my liver. Sometimes it feels as if it’s made of very heavy bloated granite and presses against my intestines and bladder.
This pain is ludicrous now, I feel very emotional. I well up but don’t cry I am feeling sorry for myself. Why me? What did I do to deserve this? It’s at these times that my mortality crosses my mind, I don’t ever feel suicidal at all but I have often felt that death would be a great relief at the peak of an attack. This makes me wonder if you take all your “baggage” with you to the afterlife, your diseases and chronic pain and constant indigestion. Do they go with you? If so, it crosses my mind that I am going to hell either way!
It’s been over forty-eight hours now. The nausea has gone and I haven’t vomited for a few hours. We are moving into the pain stage, the hundred variations of pain, and the colours of pain. The many descriptions of pain - light, heavy, nagging, niggling, aching, twinges, searing, sharp, dull, hot, cold, excruciating, blinding but most of all depressing bloody pain. I suffer from all of these at times and it takes away any feelings of hope that I may have for the future - a bleak looking future that is riddled with more ailments like diabetes, osteoporosis and of course pancreatic cancer.
“Cheer up it could be worse” someone said to me recently, which, unfortunately I find very difficult to believe. It couldn’t possibly get worse, I have very little left to lose (here comes another list) after all in three and a half years I have managed to shed the following; hope, good health, marriage, business and job, social life, weight, dignity, humour, confidence and finally (judging by this tirade) my mind. Happy days!
This product was added to our catalog on Wednesday 26 September, 2007.