Pancreatitis Supporters Newsletter Number Two
Edited to NOT include what is already on Home Pages
Hello, here we are again with the second Newsletter of the Pancreatitis supporters Network.
A few bits of information first of all. Funding is naturally a problem for any venture such as this and I have not approached any of you for money nor will I be doing so in the near future. However, I desperately need stamps! Thank you to all of you that have donated some already - remember these need to be UNFRANKED ENGLISH stamps for use in postage of the Newsletter and the intermittent letters that I write inbetween to individuals on the Network.
Before I continue further my wife said it may be an idea to tell you all about my story and how I came by Pancreatitis, stand by to be bored!
How I started with Pancreatitis
My introduction to the condition was firstly emergency admission into the Accident ward of a hospital with severe stomach pains, I thought at this time that I had burst my appendix! However, typically enough by the time I got to the hospital and was seen the attack had worn off and nothing could be found. These attacks continued at more frequent intervals and I was admitted to the General Hospital in Birmingham where I was given various tests including barium anenemas, cameras up the backside etc the conclusion at the end was that I was a hypochondriac, or at least that was the way I was meant to feel!
I changed hospitals to the East Birmingham Hospital and started on the programme testing the new insulin Humulin as a guinea pig for a study on the same. While attending one of these sessions I had a bad attack in front of the Diabetic Sister there and she got me referred to my present Consultant. After a weeks admission and various tests including the ECRP, which is a camera down the throat, I had two of these and a biopsy taken which the result of which was that I had pancreatitis.
My diagnosis being chronic pancreatitis with reoccurring attacks of acute pancreatitis which is when we get the severe pain and incapacity of an attack.
The message to anyone unhappy with their treatment is that you do have the right to a second opinion and to change hospitals if you wish. My G.P. was a great help in this matter.
That's all of that for now, I promised you all a list of the drugs that we are all taking and these are listed for your information below:
Drugs taken by people with Pancreatitis
REMEMBER! This is NOT meant to be in conflict with anything advised to you by a Medical Practitioner and is for INFORMATION ONLY.
Enough of the drugs. You may be interested in the following story from Barbara Dowling of her introduction to Pancreatitis:
Barbara Dowling's Story
I went to Ladypool Road School and on the day the pancreatitis started I was taken there by my mother who upon leaving me spoke to the teacher to say I was unwell and could she keep an eye on me. My Mother came back at lunchtime and took me home. This was then the pattern of my education during my school years. For example on the day of school outings, which were not very frequent, I would have a painful tummy yet the next day I would be alright. This condition was therefore put down to nerves or gastro upset. As a result every year during the school holidays I was sent to my Aunts in Woburn, Wolverhampton - an area that was very countrified. the thought being that clean country air would 'do me good', it did however in the way that I came back brown as a berry each year but nothing for the pancreatitis. the same pattern occurred when I went to work in a laundry as a press operator, spending such a lot of the time in the toilet caused a lot of comments. During these years there was a constant fight with my Father to see who could reach the toilet first.
I was in and out of hospital for a number of years taking Barium meals as they suspected that I had an ulcer. in the end they decided that it was either Gastric or nerves and was given Aludrox three times a day. Typically I was sick on a regular basis, usually when my Mother had just changed the sheets. However, in my teenage years the sickness stopped and the pain went. At no time was I ever on a special diet.
Three months after my 21st birthday I was diagnosed as being diabetic while i was in for the usual tests to find out why I was ill. they tried me on tablets first which were no good. I was then put on insulin on one injection per day until seven years ago when I went onto two.
In my childhood years I remember the Doctors being very angry with my Father thinking he was putting his symptoms on and this was the reason for him not going to work. Eventually he was referred to the Queen Elizabeth Hospital for 3-4 weeks and there they 'turned him inside out' with their tests and finally diagnosed that he had pancreatitis (incidentally, he was a drinker). They then prescribed tablets for him - 12 three times per day. this seemed to make him better apart fdrom when he drank which he did frequently. The Doctors then decided to research the whole family and when he told them about his eldest daughter (me) I was then taken in and out through the same tests and it was found that I had pancreatitis. In those days I took Pancreas V only - 9 tablets per meal.
I carried on with Pancreax V up to about seven years ago, when 'the change' may have had something to do with it, everything wen 'wonky'. I was 47 at the time when I started going 'hypo' in the end I was hospitalised an put on two injections per day. My diabetes since then has been in perfect working order. During this time I found that I was going to the toilet more and more frequently. the Doctors did not know what to suggest so I tried experimenting myself taking three more tablets with each meal and found that this was not enough. I then asked the Doctor if he could give me Pancrex V40 as this was three times the strength. Over the next 12 months I increased the dosage to 12 tablets of Pancrex V40 every meal. (The Doctor was most supportive of my wishes) I still tend to go about four times per day to the toilet. I still get what I would call 'sickness feelings' for which the Doctor prescribed Maxlon. I do get violent indigestion when I cannot eat anything at all during this time.
I have never drank as I did not like the taste, never smoked for the same reason. In fact I am a very finicky eater were food is concerned and like almost nothing at all.
I have just remembered one particularly frightening occasion for me when I was 10 at the time. I woke up in the night and the pain was that extreme in the tummy that it frightened me. I crawled into my Mum and Dads room and they sent for the Doctor thinking it was appendicitis. Doctor came and said that the pain was on the wrong side for appendicitis and just said to rest with a hot water bottle, which was my constant companion, and again it seemed to ease by the morning.
Incidentally, here I may have given the impression that I have been an invalid all my life. Far from it. It has never stopped me from doing anything and I am a very active person and hate sitting down for too long.
One thing does puzzle me though it seems is that people get a lot of pain with it but now I never get it apart from back pain which I have put down to Rheumatism for which I take Co-Praxamol. Also I do get a lot of headaches, very similar to hangovers. the Doctor has put me on HRT (Hormone Replacement Therapy) for the last five years which has helped a lot energy wise.
Having said that I have never met anyone else apart from my Father with Pancreatitis and am completely in the dark about the ins and outs. in fact I begin to wonder if I really have Pancreatitis at all, and there is no shadow of a doubt that I do have it.
Thank you Barbara for allowing me to publish your story and for sharing the same with everyone else on the Network. did you find it interesting? Please write in with your comments, to be included in the next Newsletter. Anyone else out there willing to have their story published? Some of you already have told me a bit about yourselves do you mind if I share it with everyone else?