Years of Pancreatitis, will this be the end of it?

Posted on Friday, February 28th, 2014 at 3:44 pm

Since 2002 I have been fighting and battling with Pancreatitis.  Initially it was only the occasional, albeit severe, acute attacks several times of the year, however as the years progressed I developed Chronic Pancreatitis and suffer with it daily as well as have frequent acute attacks at the same time.  I am now in Hospital to hopefully stop these acute attacks and if possible remove my chronic pain … but will it?

While it has been difficult for me to live with the disease it has equally been difficult for my family that have been by my side through many hospital visits over the years, too many to count.  My other complication of all of this is that I live with aspergers, depression and severe reactive anxiety.  For those that do not know what Aspergers is have a read here.

As the years have gone by the disease has gradually got worse and worse and now results in hospital visits every two to three weeks fro as long as a few days and up to a week or more, so there has been little rest between attacks that result in me being in hospital.

Oh by the way before some of you think it or say it my pancreatitis was not caused by alcohol, which many first think it is, while it is a major cause of pancreatitis it is by far not the only cause, mine after many scans and tests and due to the fact I drank very little alcohol and only on the occasional social outing, alcohol was not a contributing factor in my pancreatitis illness.  I just wanted to make that clear to everyone reading this and to not pigeon hole everyone into one basket.  It is very frustrating for me when people say oh ‘do you drink a lot?’ of which I make clear that is not the cause.

Scans of my pancreas last year revealed a cyst on my Pancreas near the neck.  They believe it is what is called an Intraductal Papillary Mucinous neoplasm, or IPMN for short.  The Specialist I am under was able to go back to previous scans and has revealed that scans back to 2007 show the cyst or IPMN and that may have been the main cause of my pains every since then and now, prior to that I assume just normal pancreatitis issues?

I have now been admitted to hospital on a short to mid term basis which could extend from 6 to 12 weeks depending on what the doctors decide what needs to be done and my own recovery process.  I was admitted this time to hospital initially to my local hospital last Friday and then transferred to a larger hospital in Fremantle Western Australia.  This was on request from my specialist not happy with my blood results and also my nutrition as I am limited in what I can eat and also only eat small amounts due to eating causing more pain, just remember that when you next eat, imagine as you eat you feel pain in your abdomen, now think of that happening each and every time you eat, anyway enough of that.

So for the last few days I have been in hospital getting blood tests and having scans of my insides and everything else that can prick or prod me some way, I feel like a pin cushion at times.  To help my nutrition I have had to have a feeding tube inserted through my nose and down to my small intestines as I am simply not eating enough myself.

The procedure for the feeding tube was no fun.  I was first told it would be done under a twilight type sleep so I do not feel the inserting the tube, so I was like ‘ok I can manage that’.  I get down to the place they will do the procedure and find out no not a twilight state I am going to be awake for it, even worse is that the anesthesia they normally use I have had an allergic reaction to and they do not have an alternative, so guess what no anesthesia or numbing of the nose passage and throat at all.   Ten minutes later the tube is in but it is not something I would request anyone have done without some form of anesthesia as it bloody hurts and is very uncomfortable, let alone making you feel like you are going to puke as it goes through the nose and down the throat.

I get back to the ward room and to be truly honest I was not doing to well, fortunately wifey (what I affectionately call my wife) arrived back and help me get through this as my anxiety was not in control and I was having a severe down moment.  It took a while and during that time I wanted to pull the feeding tube out but with encouragement I left it in there.  After some helpful medication I was able to get myself together and tolerate better the feeding tube.

The next morning the feeding tube has settled a fair bit still annoying buy it is far better than it was the day before.  As the days have progressed it has got better with exception to having the need to keep swallowing as it feels like something is stuck in there.  When eating which I can still do it feels like as you swallow that the food your eating is not going down, I know it is but my brain and throat is telling me otherwise.

So what is next?  At this stage I am not sure, I have had more tests and MRI scans and hopefully the doctors will have a plan for me to stop the acute attacks and if possible remove my daily pain.  Surgery appears to be the only option, however surgery is a last resort which is why I have suffered with this for so long.  It now however has become too frequent to ignore and surgery is the only path for me now, but which surgery? And will be the end of it?


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