Chronic Pancreatitis possible? Or is it something else? Struggling to find answers

A lot of this sounds just like me. Im now 32 and have been suffering for the last 5-6 years. Sorry this is going to be a long one.

The below was written in 2010.

‘In my younger days I liked to drink and ‘party’ most nights of the week if I could. Like most teenagers do when they discover the freedom and consider yourself invincible. I started to get a bad feeling after an evening of drinking but I put this down to getting older and the hang over’s getting worse, but this feeling was a lot worse than a hang over. I would often stupidly have hair of the dog which would make me feel better. Anyway I decided enough was enough and cut drinking a lot about the same time I started trying to find out why I started feeling so bad.

I started to get pains in my back and underneath my left rib cage so eventually I went to the doctors. The pain lasted for around a week and a half and my doctors suspected stomach ulcers and put me on a course of lansoprazole 30mg which seemed to help at the time but I’m pretty sure it was coincidental.

2 months later I got the pains back again. The pain would not be there first thing after I woke up but would kick in after 30mins after waking up and last until I went to sleep. It would help if I lay down so I could sleep fine. I went back to the doctors and got sent for an endoscopy and blood tests. Bad pain lasted again about a week and a half. The hospital said my stomach looked fine and took a biopsy which came back all clear.

I was then sent for an ultra sound scan and it was said all looked well. More blood tests also came back fine.

About 2 months later pain came back again (lasted just over a week) went back to the doctor who said there was nothing wrong with me and said he thought I had M.E. due to me wanting time off work as I felt so drained and the pain. Was prescribed anti depressant (which I never took) I wasn’t depressed just worried as id looked up my symptoms and thought the worst.

Back to the doctors again in pain around 2 months later. More blood tests ordered and my doctor telling me its not unusual for a man of my age to be getting pains (like nerve or growing pains) ended up in tears with my doctor and me telling him I thought it was my pancreas. To which he said he had no reason to think this would be the case as all tests have come back negative. As I got so upset he agreed to a CT scan and more blood tests, with a fast.

CT scan done and the fluid they injected me with mad me feel bad for 2 hours after, pains under my ribs again and nearly sick from it. Scan and blood tests fine.

I asked my doctor to be referred to a specialist. This was done and over a month later I got to see a gastro who was running very late. So he stuck his finger up my bum and said it was not my pancreas as id been thoroughly investigated, keep taking the lansoprazole and see how I get on. Oh and that id been referred to a surgeon and my doctor has sent me to the wrong people. In and out in 10 minutes… including his finger!

I’ve read a lot but I still don’t have answers. My doctor basically laughed at me when I mention pancreatitis. He said my insides are healthier than his. I’ve worried myself sick at the time that I've only got a few years left and feel like my days are very much numbered. I know there’s going to be people a lot more worse off than me. But I know there’s something wrong

I’m 5'10 and weigh around 9 stone so I can’t afford to lose weight. I eat health and pretty much always have. I don’t drink tea or coffee or drink fizzed pop. I eat plenty of veg and fruit.

To add to this I took a fight in June 2009 and I thought I was going to die when landing on the way back. The pressure down my left side was so bad. Whilst flying it wasn’t pleasant either. Now I scared to fly also. Sure it’s related.

My family are also worried and say I shouldn’t self diagnose and if I had ‘a serious problem like that they would have found it with all the tests I’ve already had’

Since I wrote this ive also have a tube up my nose and a load of liquid pumped into my small bowl, with xrays. All clear.

Ive been back to see several GP’s and had a number of ECG’s which have been fine. One visit to a GP confirmed that I had a heart murmur (not spotted before). I was therefore sent for an Echocardiogram. From this they confirmed that I have a dodgy heart valve with some brightness around my heart. If I’m honest if was a little relieved as a dodgy heart valve is better than a dodgy pancreas. The suggestion of pericarditis wasn’t so good.

I was told to visit a hospital during my next flare up. I was working in London at the time and feeling pretty terrible so I did. It was short of a joke and they said what do you want us to do?!? My answer ‘You’re supposed to be the doctor’. It was suggested that I had growing pains and I was sent on my way.

Back to the GP who sends me back to the heart doc. He confirms to go for blood test during my next flare up and have a heart monitor fitted but my heart shouldn’t be causing my pain that I mention. I got the bloods done but didn’t go for the monitor. Managed to get another Echo done 2 years after the original and they said they couldn’t be sure the valve is a problem so an MRI of my heart was requested.

This confirmed there was no problem with the valve and no brightness around the heart. The MRI guy suggesting that the 2 Echo that were done which showed brightness must be due to an incorrect contrast setting.

I stopped drinking for around 12-18 months back 5 years ago but when I was assured that my pancreas was fine I started again. Since then I could count on 2 hands the number of times I’ve drank too excess. Generally a glass of wine with a meal or a beer or 2. It generally usually takes the edge off the pain.

Anyway… ive continued to feel pain on a daily basis but to a manageable level in which the pain feels ‘normal’ but every 5 months or so ill have a period of weeks feeling in more pain and very tried. For the last 2 months ive felt pretty bad. I’ve been back to the GP who arranged for more bloods and asked me to try Mebverine. Bloods came back fine, tablets haven’t helped.

Because ive been feeling bad for so long with continual pain (2 months) ive started to worry again. My stools are fine and don’t seem to change a great deal. Ive stopped drinking a few weeks ago. Ive decided yesterday to put myself on a low fat diet, not that I ate a lot of bad food anyway. Im off to get some Turmeric tablets and Grape Seed Extract tonight as I understand these can be good for inflammation. The pain is constant and stress certainly doesn’t help but I cant say I feel or should be stressed right now. Since the early days the pain is a little different. I don’t get it radiating to my back so much any more but if I was to push my fingers up inside my left ribs I feels inside there. I also feel it right around my left side which I didn’t so much before. It’s a little like stitch x10 and feels like someone has scraped my insides out with a spoon. Ive spent many hours crying because it just doesn’t want to stop.

Im considering paying to go private now but im not sure if this is going to produce anything other than what I already know. Ive called the docs today and asked for a call back from the same GP I saw last time, in which I spent the whole time apologising to him for being there and still asking for help. He’s words a month or so ago were ‘sometimes we just cant find out whats wrong with some people’. Im going to ask for a faecal test as its never been checked and what bloods were done the last time. Im also considering getting my records to see whats within them and if I can see any changes myself.

See if you can get prescription for enzymes (expensive). If they work it's probably because your not digesting fat (pancreas issue) and not IBS. Don't think they do anything for IBS.