PERSONAL EXPERIENCE

Editor’s Note: Pancreatitis is defined as ‘an inflammatory condition of the pancreas which can be acute or chronic.
 

From a very early age, one of my brothers teased me for what he thought was my feeble attempts to dodge the dish-washing after meals. Every time I ate food I would get pain in my stomach, in the same area which now gives me excruciating pain. At that time, this pain made me feel like I needed to go to the bathroom. During these episodes of pain, most of what I passed was oil. Of course, no one could explain this at the time and so it was attributed to fatty foods. However, the problem with that theory was a low fat diet. In those days people with Cystic Fibrosis (CF) were placed on a strict non-fat diet because it was thought fat contributed to abdominal pain/cramps and diarrhoea, and made digestion harder. Today, it has been discovered that the pancreas gradually dissolves, turning into a fatty mass, thus the explanation of the oil.

Complaining about the pain in my stomach started some investigations. First of all, at that stage (13 years) it was decided that the problem was my appendix, and so... you guessed it - I lost my appendix. There seemed to be some relief from the pain for a short time but it returned, to be just the same as previous experience.

During puberty the pain seemed to increase in intensity at times and so it was decided to do some further investigations. Again nothing conclusive was observed and so the pain was attributed to hormonal change and menstruation.

For many years I complained about my big, swollen tummy, but was told that was all part of having CF, the cause being the malabsorbtion of food resulting in slight malnutrition and pot-gut that accompanies that disorder. I was never able to wear anything tight around my waist because it made me very uncomfortable and gave me pain in the region discussed. I did not have a lovely hour-glass shape, ever, because of the distended stomach.

Endoscopy and gastroscopy investigations failed to reveal anything sinister outside of minute duodenal ulceration, for which Cimetadine was commenced. That too seemed to soothe the pain for a short time, but it returned, being noticeable every few days, disappearing for a few weeks, only to return again to niggle.

In the following years, my bowel motions graduated from diarrhoea to chronic constipation, without clinical explanation. In 1994 my clinical specialist ran a series of ultrasound and PET investigations, with only the gall bladder showing small signs of enlargement, but nothing that would indicate anything wrong with the pancreas.

In 1995 this pain began to increase in intensity, and other symptoms began to appear, ie palpitations, intense hiccups, copious amounts of very offensive flatulence, change of stool colour from normal to light and white, low-grade fevers and night sweats, vagueness, confusion, hypoglycaemic attacks, arthritic-type muscle and joint pain (diagnosed as Fibromyalga), intoleration and allergy to many foods, and one thing that bothered me intensely......a forceful large ‘bang’ (just a split second in duration) in the area below the sternum, as though someone had punched me in the stomach, only from the inside out. To this day no one can explain this phenomena, except perhaps the pancreas going into large spasm. This spasm feels as though it will knock me out, like an upper cut to the diaphragm - it’s terrible.

I did not realise that these symptoms accompany Pancreatitis until I had access to a nurses text book on the subject, telling me so much that seemed to fit my profile, and gave me answers to many puzzling questions I have had for years.

See my the CF clinical gastrologist in October of that year, an abdominal x-ray was ordered, from which he decided that I was chronically constipated. Wow, what’s new!? And so, was sent home on some Lactulose syrup for chronic constipation. Of course the pain continued, becoming more frequent, intense and most uncomfortable. I could no longer sit for any great length of time, whereas I used to sit for hours at the computer.

By August 1997 it was decided that the gall bladder was the problem, and so...you guessed it - that was also removed, in an emergency operation due to the intensity of the pain and threat to my life. Once again, it seemed we had hit on the right thing because the pain had resolved. However, this proved to be temporary also.

During the next 12 months other things happened which I believe were precursors to the return of the pain:

1. My CF ‘arthritis pain’ (endured for 20 years) increased to extreme proportions and was diagnosed as Fibromyalga; and
2. I felt terribly ill, like I have never experienced in my life previously, with fevers, night sweats, and lethargy that was unbelievable.

I asked my doctor if CF arthritis could make me feel so ill, and he did not know. I was placed on yet another drug, an anti-depressant, not for depression but because it diverts pain reception, and so I felt so much better, except for pain in my abdomen. But the low-grade fevers persisted as did most of the symptoms described above.

One morning in June 1998 I woke with a jolt. Severe pain was coursing through my abdomen, beginning just beneath my sternum to a fraction below the ribs on my right side, and extending up into my chest and shoulder tips.

The pain felt like someone had took hold of my insides and was twisting them into a huge knot. The pain came in spasms, ebbing to tolerable level for a second or 2, only to return more severely. The spasms began to increase as did the intensity of the pain until I could hardly breathe through my screams.

To cut a long story short, I ended up in hospital in Sydney as the local doctors failed to adequately diagnose the problem, putting it down to constipation. In all fairness to these doctors, they were merely following the diagnosis made 3 years earlier by a gastrologist specialist in Sydney.

Now, looking back over the years, I realise that this pancreatic pain (as I have described), has obviously been part of my experience for approximately 30 years (I am now 45). It has been extremely difficult to get the attention of doctors over this and several other problems which I believe are related to it. Because I have Cystic Fibrosis, understandably every symptom I present is seen through the light of this disease, and so quite often other things are ignored, ‘swept under the carpet’ or filed under ‘too difficult’ because of the dilemma involved in finding an accurate diagnosis, rather than investigating the cause.

I was now hospitalised for 3 months, enduring a nightmare of pain. After witnessing this pain first-hand, the doctors began to realise that I really did have something to ‘cry about’. Tests were performed such as ultrasound, CT scan, MRI and others. The CT scan revealed a shrivelled and dissolving pancreas, which had cysts on the underside. I was told as this was common with CF they were unsure as to whether it was the source of the pain. My liver function tests were normal, and nothing else seemed to account for this discomfort I felt, and so Pancreatitis was diagnosed and thus began a regime to try and alleviate my agony.

Relief came in the form of morphine and buscopan (anti-spasmodic). A trial on TPN (Total Perental Nutrition) for 6 weeks in order to try to reduce the inflammation of the pancreas by giving it a rest from food, failed to make any difference, and so the pain team were consulted.

Firstly the pain specialists tried a spinal block without success, then a spinal chord stimulator was inserted into the epidural cavity of my spine around the region of the pancreas nerve receptors. This also proved unsuccessful, and in fact, puzzling. The pain doctor had not come across anything like it before. My spinal chord was also inflamed in the area of the pancreas. His explanation was that I had the pain in my pancreas for so long that it had inflamed my spinal chord at that position.

Placed on an anti-epileptic drug to see if the inflammation in the spine could be reduced and give some pain relief, I returned home after 3 months in hospital, but sadly this drug failed to make any difference to the pain.

I am currently on a regime of 100 mg slow-acting morphine tablets twice daily, and liquid morphine for minor break through pain. I also have to give myself morphine IMI injections when the pain becomes unbearable. I am totally disabled, unable to do anything but lie on my left side night and day because I cannot sit very long or walk very far before I am in agony. Travel in a motor vehicle is torment - in short, my life is zero at present.

In all my experience with CF I have never felt pain like this, even gall bladder pain. Those in the medical profession tell me that pancreatic pain is one of the worst pains anyone can experience, and I believe them.

The doctors do not want to remove the pancreas due to the extreme threat to my life in undergoing such an arduous and dangerous operation. It would mean instant Diabetes, even though they believe that will soon be part of the equation anyway, as my pancreas continues to dissolve. They also told me that once the pancreas had dissolved, I should be free from pain, but until then they are finding it difficult to treat , using only pain relief. They have no idea as to when it will dissolve, it could be months or years......I prefer months......NO, days!

I am currently waiting to attend further doctor appointments to see if the pancreas has dissolved any further and to check my pain relief regime.

Pancreatitis has proved not only to be an excruciating experience, but very debilitating and tedious, restricting me to nil activity, compared to a lifestyle where I used to swim 15 laps of our local pool, 3 days a week. I am unable to help with house keeping, causing my unwell, elderly mother to take full responsibility for all the household necessities and care, and I can no longer drive our motor vehicle. I am even unable to go to the movies, as sitting becomes complete agony after about 1 -2 minutes.

I am hoping this article may not only assist people with CF to correctly understand what is happening to them, but also the medical profession. They and their families can then recognise symptoms much earlier than in my case, and insist on appropriate testing.

Christine Wass
Australia
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