Gastroparesis - being sick

Now, I feel it is time for a medical explanation for my poor, curious friends. Not too detailed, I promise!
As some know, I have been quite unwell with hospital trips lately (3 in 3 weeks, in fact, a total of 16 out of 21 days spent hospitalised) and as I am aware the prayer support network has been incredible. I have so many people here to thank and appreciate for their support. Now, where was I. Oh yes. So, I have been unwell on and off for a good long while now, not yhat I can really put it down to anything, but a busy stressful 12 months has, I daresay contributed. Life got busy, and eventually some form of weakness shows under stress, haha. My stomach began to disagree with being a stomach and for months it would fight. Tolerable, for a time, but eventually the symptoms got so bad it began to have an everse effect on my body. Thats when I ended up in hospital, very much the definition of 'very sick'.
In simple terms, my body slowly got sicker and sicker as it struggled to provide the nutrients needed to survive. The reason it struggled so is due to the consistent, worsening stomach reactions, which included vomiting. This, unfortunately, eventually lead to malnutrition (I will never wish away spare bits of fat again!) which, obviously affects the body's ability to function.  Add to that dangerously low potassium levels (which I learn are essential to heart function, and can cause heart attacks if not within the normal range) and this presented itself as a rather hairy, scary situation. This is why I ended up on a centraline drip (one implanted below the collar bone directly into the vein travelling towards the heart) with massive amounts of potassium and fluid being pumped in, to account for the electrolytes that were so badly missing. Add to this days in intensive care monitoring (the potassium infused at high levels also causes cardiac issues) and what a fun, exhausting mess!
That in itself was pretty hard. I physically felt nearly dead, and certainly not with it enough to do too much thinking, but getting my head around it all was a real struggle. One small battle of many.

Now the hardest part - what is the problem? So many tests during that first week. Blood tests, daily, which only accentuated my phobia of needles because I have learnt what horrible little veins I posses - and any attempt to collect blood or canulate ended up in 5 stabs to one success - as well as one3 hour midnight session in emergency with an ultrasound machine, trying to find the little suckers.
More tests. Doctors constantly re asking the same questions, trying to find some clue as to what wasgoing on. Ultrasounds, ct scans, x rays - I even had a gastroscopy, which was a little scary (a camera down the throat while sedated) and stomach biopsies. These poking, prodding drs were talking an obstruction, pancreatitis, no, a systemic disease, bacterial, no... Endless list. Obviously something was going on!
Now the hardest part of my week. The doubt. Being sick, and knowing it yourself, but seeming to have no obvious reason, no result, no fix it answer. Puzzled drs, so many people asking if one is simply anorexic  and self inflicted (which was an incomprehensive thought for me) all eventually leads to questionings and doubt, and there the enemy has his field day. Imagine not being believed, and even questioning yourself? Those few days in hospital were pretty tough - and raw.  I may elaborate on them in future, but to be honest they are still a little too scary. This seems to be when God started shaking my world upside down. Or maybe that was only when I began to take notice.

So  back to the medical. The diagnosis. This was harder than the mystery of illness.
After all of these tests, we finally did one last one which I would have happily missed - so keen was I to be home and out of the boredom and madness of being stuck in a hospital bed for so long. Oh, the mind has time to wander when it is bored.
This test was done - one known as a gastric emptying study test - one that is designed to follow the progress of food through the stomach/digestive system and monitors the time it takes to do so. These test results proved to be abnormal (which didn't surprise me, given the way my stomach had been acting lately, seeming to retain food for very long periods of time) and there we had it. Well, sort of.
Finally, I got my diagnosis.

Gastroparesis.
 
Yep, it is an odd word. I have, by default, in the last 2 weeks of getting used to it myself, learnt to explain it as this: basically, 'paralysis of the stomach muscle'. In english, my stomach does not want to be a stomach. Sounds exciting. And annoying. And like my stomach. 
So, simply put, food does not pass through to the intestines (in what is considered a normal period of time - so a few hours) because it cannot be expelled by the normal pushing of the stomach muscles. Its quite simple - normal stomachs eat/break down food, move it along and then digestion occurs in the small/large intestines. My trouble is that food is not even being moved far enough along to be digested. It is also vomited back up, in my case, making it even harder for normal digestive function. Now, those stomach muscles of mine. They just don't work.
This obviously causes a huge problem (haha) and the symptoms basically include vomiting, constant nausea, bloating, severe cramping, reflux, malnutrition/weight loss, no intake of food so reduced physical activity, etc. Now I am not sure what my stomach thinks it is, but it certainly is not being normal.

The cause for the sleepy stomach. - Is nerve damage. Medically speaking, this is not repairable as nerves are a long standing thing and once damaged, as we know in the cases of nerve loss (like quadroplegics) the full use of these nerves often does not return.
The cause for this nerve damage, in mine and many other cases of gastroparesis (I am discovering) has been labelled "idiopathic". (See my page on Gastroparesis for more information) This is basically a mishmashed term to label the cause or reason as a 'medical mystery' by doctors who cannot find an immediate/obvious problem or cause. In some people the condition is caused by diabetes (which I do not have), or by some serious systemic disease like Lupus. The good news is mine is so far apparently not caused by an immune disease. There are a few theories on how this idiopasy is brought on, but I am not sure of my own yet.

Just a quick reflection - while Itry to compose my wandering thoughts and bring some kind of sense to what I am saying.  So far, as it stands, I do not understand why what happens happens, (who ever has?) but I believe with with every fibre of my being that everything happens for a reason, and that God will be glorified through this. Unfortunately for me this doesnt make the suffering any easier...

So, what does gastroparesis mean to me/my life and why am I making such a big deal about it?
Because, my life just changed. It fell apart. Everything I have known about everything has been altered. What I think or believe about many things is being turned upside down and messed up. This is really just a minor issue but I will address physically, first. There will be a time for the addressing of the huge spiritual and emotional upheaval I have been going through.

As I mentioned, Gastroparesis is nerve damage, unrepairable. Medically, this is a confition that can only be managed, not treated, by diet and lifestyle chioces. Staring me in the face is a rather overwhelming world of facts and future of this condition. This is hard, on a physical level, to come to terms with the thought that regardless of what happens from here on, my life will not be the same again. Just physically speaking, food and eating (or rather not, and not being able to) is pretty much the main issue. My life is really quite daunting to think that I may not be able to eat some things again, nor in a manner that I was used to or took for granted. This goes so much further than just maintaining your body with nutrients - and I am discovering what a huge influence food has over one's life - and just what it means when it is ripped away. It is very easy to become complacent about something that we don't really have to think about - we all eat and live. But man, I am getting a new perspective on this too and it certainly is not easy! This will be one of the things I hope to elaborate on as I slowly overcome this fight with food.

Food is obviously a problem. Well, not just food, but eating, keeping it down, and actually digesting it - or at least getting it to the intestines! My dear gastroenterologist, professional as he is, simply discharged me with a medical diagnosis and no real day to day living/eating plans - I was given instructions to go home and eat - despite the unaltered vomiting and food intolerance issues., which still were not resolved after I left hospital the first time. This, uh, 'plan' didn't really didnt work, and I have had to, through some internet reasearch, discover myself a bit more about this condition and its management. There is a great deal more to it than one might think, and some cases are so severe that those with the conditions can have periods of many hospital trips and severe enough problems to require surgical implantation of stomach/bypass feeding tubes for weeks at a time. I pray it never gets that serious.
 So, back to the eating. It is currently very limited! This is partially due to the fact that this stomach has been upset for so long and is also irritated in form of a bacterial/food intolerance problem, to add to the condition.

What I can't eat:
Anything high in fibre, as it takes too long to digest and forms stomach masses. This means most raw foods, beans, lentils, meats, fruit, veges... Nuts, dates, etc, grains, an
Anything high in fat. This is because this also tajes a long time to digest.
My own current intolerances to wheat, straight dairy, anything with acid like tomato, cheese, pasta, bread, etc. this is because of the vomiting snd it is far better to aviod these foods than tolerate the very bad reflux/vomiting or painful cramps that ladt for days.
Now, take yourself shopping and think, without all these.... What can I eat??? It is pretty mininal. So, needless to say, this has been a huge struggle because, for me, it affects everything right now.
All that looks pretty depressing and I wil admit, the hardest thing has been wondering if I will ever be able to eat normally again, whatever that be. So let's not dwell on the negatives too much. I will be writing up my own thoughts on food soon as this is going to be an ongoing issue for me - whether I want it to be or not. Now see why my world is screwed up? And that is only the physical.