Being gluten free is now my way of life for life. This is the complicated, whole and unfortunately still developing saga up to today (early 2020).
(Warning: Contains graphic images and descriptions that might put some folks off their dinner.)
It is December 2010 and Santa Claus is preparing for me a little more than his usual surprise. On new years eve I became an emergency admission at our local NHS hospital with enough pain in the abdomen to be strongly suspicious that the second coming was upon us but that this time I had been chosen for divine impregnation!
Resplendent in my new national-elf anti-DVT stockings, here I am in the acute assessment ward, heavily sedated but cheerful enough and totally unsuspecting of the sequence of events that were about to unfold. I spent Xmas day in an almost deserted NHS Hospital (The GWH in Swindon, UK, my home town) well aware that NBM written above my bed meant turkey was off the menu. It was not until Boxing Day that one of the few surgeons remaining on duty scrubbed up to attempt the removal of an appendix from my now very distressed person. All the Christian surgeons were off enjoying their cold cuts and their postprandial sherries in the drawing rooms of their country residences. Meanwhile events in theatre were not going well.
Key hole surgery was attempted but was not successful. Conventional surgery was started but revealed that the inconsiderate appendage in question had burst and had chosen to do so some time before my surgeon got a look in. Undaunted by this setback and warming to his challenge the tormentor in chief deftly skirted the navel and sliced open his specimen from sternum to abdomen in order to have a better look around. Then, making a photographic record of the whole sorry state of affairs, he proceeded to his work with relish seeing that I was the only turkey he was likely to be carving that day. Two days later my surgeon rather proudly informed me that there had been hardly any caecal stump left for tying the suture but that he had, no doubt having been an attentive boy scout, achieved the impossible and everything was good in his world.
Everything was not however quite as fine in my world as either he had anticipated or I would have preferred. His handiwork quickly ulcerated, peritonitis set in, a fact noticed by an attentive student nurse, and five days later the same incision was being re-opened on the torso of a now greatly more dilapidated, distressed and delirious specimen of humankind for another attempt at a clean out. I had been forewarned that a resection might be needed and sure enough my misgivings were rewarded. On coming round, through a mist of semi-consciousness, I found beneath the blanket, a newly repositioned navel at a jaunty angle and a plastic tube erupting from my left side. A serpent in the form of a double row of quite artistically random steel staples more than 240mm long meandered its way around my now cheeky, winking navel and there were two curious little flesh coloured packets. I would later discover that berneath these add-ons were rather cute but different stomas, beautifully crafted, with real personalities and an automatic, rhythmically mesmerising, peristaltic life of their own. I calculated them to be operating at about 7 rpm and unceremoniously named them raspberry and strawberry, as you do. As can be seen in the picture the outcome was quite surreal.
The recovery period lasted nearly four more weeks and included 27 failed attempts at cannulation and a return to theatre to have a steel drain tube fitted under an ultrasound scan like a burrowing worm in my right side and terminated by a mysterious access adaptor inconveniently stitched in where I would have liked to lay when asleep. There followed another return to theatre for a PICC line in my neck, vital organ failure, oedema which caused me to blow me up like a Michelin man leaking water from every pore, one failed hallucinatory attempt to escape via the third floor window, silver furred spiky rat creatures running around the curtain rails, a leaky catheter, a change of NG tube and litres, literally litres, of black-green vomit day and night. This was all much too horrendous for print so I shall spare my reader’s imagination and just say that there was an eventful four week recovery period. Both of my insistent and determined requests to be allowed to die were rejected out of hand and so I did in fact recover, 33kg smaller, almost immobile but well enough to return home in my new wheelchair to start on the long road north.
I admit to being almost sad saying goodbye to my familiar fruits when, ten months later, after a long, slow recuperation, I volunteered myself for another chase down the scar furrow to undergo what is called a resection. I was to became once more whole with only the scars (plus a new one) to prove it. Underground, as it were, I would be minus a good length of pipework and that clever little not-to-be-underestimated junction they call a caecum but at least the inconvenience in the convenience would disappear. Unfortunately I developed Urticaria (hives), they said from the antibiotics (Co-amoxiclav) which turned the four day stay in hospital into a four day nightmare. Urticaria is an auto-immune response, please remember that little bit of information for later in this narrative.
Now I could have kept this brief by just informing my reader that I had had major bowel surgery, the whole sorry tale would have been curtailed and we could move quickly on but that might have sounded more like just a quick nip and tuck. I needed to garner a little more sympathy in preparation for what came next.
Just as a little aside a most hilarious incident took place during the pre-op preparations. In spite of protestations and attempts to explain an insistent nurse following, she said, the surgeons instructions, obliged me to have an enema, “be nice and clean inside for the surgeon” she said. My explanation as to why that would not be quite as clever as she thought included pointing out that a) nothing had passed that way for 9 months and b) that both ends were open (two bags you remember?) and there would be an almighty mess as the expected eruption would fire from both ends. Not deterred she went ahead and after just a few minutes I did indeed explode in a fountain of mucus from both ends of the offending (and now highly offencive) remaining colon section. Jolly clean it was afterwards though and the time waiting for the operation passed much more quickly than it might have otherwise. This next image shows how I appeared before the reception. Baggy trousers de rigeur when you have 'attachements' to accomodate.
As I have tried to describe, what should have been a straightforward appendectomy turned out to be extremely complex. My inwards were outwards three times in all, perhaps more if the repacking needed adjustment on the operating table. There had been a great deal of cutting, snipping, modifying, washing, cleaning and general buggering about with those inwards along with drainage tubes invading my personal person. One of these drainage devices, the steel tube, wiggled its way into the depths of my being so far that it seemed endless especially when it was finally, slowly and thrillingly extracted by an obscenely gleeful ward doctor at the end of my stay. This picture is from two months after the resection, December 2011, still a little fragile but now, feeling the need to smarten up with shirt, tie, proper trousers and at last a belt where an ileostomy bag used to be.
Those of you patient and observant enough will be saying by now “so what about gluten?”, bear with me. I am just building the tension.
So what came next? As far as the NHS was concerned, nothing. After the first spell in hospital, apart from visiting the stoma nurse a few times for checking the "apparatus" which now adorned my nether regions collecting effluent from my new "fruits" and the general health check prior to the second re-section ten months later no doctor, surgeon, consultant or registrar planned any aftercare or was interested in or seemingly responsible for my post-operative well being. I had been discharged back into General Practise and it was all now in the hands of my GP.
He partially controlled the manic diarrhoea with Loperamide, 8 tablets a day plus two co-codamol to get through the night (with only two midnight trips to the loo). Later on acid reflux was summarily dealt with by an Omeprazole tablet every day.
Unfortunately the only way to combat lactose intolerance is to give up Pavlova, Stilton cheese and cream teas but a shortage of brave faces notwithstanding, one was found and put on when Lactose intolerance was diagnosed and dairy went out.
Then came the hyperuricaemia, gouty big toe, monthly it seemed, very hot and very big accompanied by four days excruciating pain and inactivity. Eventually the months seemed to run into each other. Giving up alcohol and rich food was not an option since I drank no alcohol whatsoever (Since 2004) and ate only moderate amounts of red meat. Allopurinol to the rescue.
Disappointed by being downgraded as a blood donor due to anaemia I visited my GP a few months later for a solution and after two months of iron tablets resumed donations. 11 out of 10 for persistence and a sense of social responsibility.
Which brings me to hypertension, high blood pressure. As my weight recovered to pre-op numbers so did my blood pressure and then some. A few medicines were tried, I was allergic to one, nauseous with one, itching with another and on the last one, blood pressure instability caused me to faint at what was to be my final blood donation when, after giving generously of my vital fluids, we had a little fainting episode with a BP of only 40 over something. It was of little consolation when the head donation nurse informed me that I had been the first donor for whom she had needed to call an ambulance in her entire career and she was, by the way, no chicken.
We hobbled along, my gut and I, another three years like the rattling, gurgling, hammering pipework of a Victorian institution settled into it's semi-stable state of precarious preservation and maintained by chemical interventions and constant tweeking. The Loperamide was tapered off over the first 6 months and we levelled out to an average of 6 loo visits a day, 2 or 3 in the night, after about 15 months into the recovery. No more blood donations, no more cream teas, very few trips out and those we did were carefully planned to stage-post, as it were, from toilet to toilet. But semi-stable AND alive! Surely that was a thing worth celebrating! It is 2014 and we are thinking by now that things are getting back on track. Or to put it another way, I have returned to being the little old perennially optimistic fat twit I had been in 2010. Optimism however turned out to be somewhat premature.
In the meantime I had learned to put up with excessive hair grease which appeared out of nowhere and not to worry too much about an excessively fishy urine that also began out of the blue following fish and chip suppers.
We had enjoyed a few good months, my infinitely patient other half and I, when four years after the initial emergency admission, the trembling, palpitations, paranoia and flashbacks started. My off switch had malfunctioned and, with a brain permanently engaged in a futile attempt to process an endless stream of gobbledygook swimming around in its depths, sleeping was a thing of the past. My GP informed me that a good old fashioned stress event was underway with a vengeance, that I must submit to his regime or I might never recover and that more medication was required. Fifteen months later, a period which included a relapse, I was able to move on. PTSD was diagnosed. I resisted the temptation to repeat to my GP that little voice in my brain that kept saying “no shit Sherlock”!
Now I am a patient man by nature, inclined to take things as they present themselves and make the best of what is available but this was all beginning to get a little tiresome.
Time passed, as did a lot of other stuff, regularly and often.
Now we have arrived at late summer 2016 and I am enjoying a medical TV programs, a perverse curiosity I suppose but now coupled with a wide range of interesting medical conditions. The presenter was Dr. Michael Mosley. The subject, Coeliac disease, an inherited condition and ticking off the symptoms in my head I reckoned I had the full set. Dr. Google was again consulted and revealed that this illness although inherited can sometimes lie unsuspected and hidden until kicked into life by MAJOR BOWEL SURGERY. Epiphany! Waves of positive salvation-like encouragements emanated from my mobile device and within hours I was gluten free and on an experiment that would change everything. After seven weeks, waltzing in to my surgery on air, grinning and glowing with new found vigour and purpose I saw my GP and proudly announced to him and four students that I had Ceoliac disease and was now taking a dump only 3 times a day. After a few polite interchanges along the lines of "Oh yes of course you have now please sit down and tell me what's the matter" he had no choice but to agree with me. The students nodded politely.
To be tested it was necessary to eat gluten in the form of one sandwich a day for four weeks prior to blood tests. On this regime I became even more ill than I had been before the gluten-free experiment. The Coeliac tests came back negative and non-coeliac gluten sensitivity, NCGS, was diagnosed. Gluten, or something associated with gluten annoys my now compromised auto-immune function so much that it punishes me for eating it. Leaky bowel syndrome has been mooted but there remains a small chance that Coeliac disease is present in spite of negative test results. Urticaria or "hives" following the bowel resection offers a clue perhaps and might not have been an anti-biotic reaction at all. NCGS has the same effect and the same superficial symptoms as Ceoliac disease so I do not eat any gluten (apart from a few accidents, and it is amazing how little it takes) and everything has changed. I am now back to being a once-a-day shit, shower and shave man, sometimes two of the first mentioned but not always. Transit time has gone from 30 minutes to 14 hours or more. It turns out I had been suffering from malabsorption thanks to such a short transit time for many years and just about getting by until my system ran out of patience and gave up.
I have now gone from ‘getting by’ to being profoundly well, physically at least, and glad to be back with just the genuine old age complaints, arthritis, back ache, tinnitus, all suddenly so comfortingly normal. Excessive hair grease stopped almost immediately. Post fish fishy wee wee, which turns out to be due to a reduced ability for my gut to process trimethylamine, continues but I keep that to myself. Treatment for gout and hypertension continues and further investigation has revealed a vitamin B12 issue, hardly surprising since it turns out that the part removed at the very beginning, the so-called distal ileum with its caecum, is the very part you need to absorb the stuff. Injections every 13 weeks have dealt with this Vitamin B12 shortage.
Although it is vital to avoid gluten like the plague fortunately a NCGS reaction does not seem to be physically damaging to the bowel lining. I can therefore take some risks but I will know within half an hour if I have ingested any gluten. Even the tiniest grain in cross contamination will produce effects which usually last about 24 hours, longer if there is more of it. I can be philosophical about these accidents along the lines of 'well everyone needs a good clear out from time to time'.
Not wishing to be too indelicate but it is difficult to put into words the elation to be felt on producing a proper turd after 6 years. Also I have discovered that there are compensations for accepting a life-time ban on Cornish Pasties, fresh crusty bread and the wife's legendary meat pies. The apparent lactose intolerance is due also to the fast throughput aggravated by there being no caecum. Quantities of unmodified di-saccharides get through to the colon where they ferment but now I can safely and with some relish, as long as it’s eaten after more robust fare, enjoy a double helping of Pavlova and quantities of the truly magnificent Dorset Blue Vinney cheese without batting either an eye or a toilet lid!
I’m not right in the head but at least I know what it is. I can call it out by it’s name and It can be wrestled whenever it comes at me like a thief out of the light to hustle me into the shadows for a mugging. PTSD is a monster and how I keep it under my control is to be the subject of the next story.
I have developed a back pain issue which I am told is due to the amount of muscle damage caused by three successive lacerations down the front from my sternum to my just-short-of-em which I am now learning how to manage.
I could rant a little at the NHS, probably should, probably should have sued but that just prolongs agony for the sake of mere retribution. I could not do that, in any case it would betray the profound respect I have for the nurses who cared for me and especially Alex, the pretty nurse from Latvia, who saved my life by noticing something wrong and having me tested for peritonitis in time.
I read recently that "Dr. Google" is causing some GP's great consternation because, they say, it is undermining their professional standards and methods and in particular their relationship with their patients. Sorry for the language but f*** ‘em! I had a life threatening illness and three operations with life changing consequences and no doctor either in or out of hospital was there for me. They failed me, the NHS failed me, my GP's, all of them failed me. Dr. Google however was there for me and, together with the forbearance and patience of my dear wife, my persistence and my engagement with my own wellbeing, saved my life.
Hurrah for Dr. Google!
Down with gluten, my sworn enema!
A Little Note About Gluten
It has become somewhat faddy to go GF but there are many genuine sufferers whose systems react unpleasantly to gluten containing foods, i.e foods containing Wheat, Rye or Barley. This can be serious enough to be positively dangerous rarely life-threatening. In many others it is variously serious, debilitating and inconvenient.
There a variety of resources to help with diet, recipes and information. Many supermarkets have a FreeFrom section and there are is a wide and growing range of foods clearly labelled Gluten Free. There are many foods not especially made for the GF community but which are labelled GF but less obviously so. There are however others which are safe enough for NCGS sufferers not labelled GF and not generally guaranteed GF but which are in fact safe to eat with only minimal risk.
All food is gluten free (except wheat, barley and rye) until it is processed, added to or otherwise tampered with. This is surprisingly obvious and useful information but not nearly as obvious to non-sufferers as it should be. I have been asked if I can eat apples. When that happens the perpetrator is usually rewarded with a diatribe for his or her pains.
Generally FreeFrom products are unnecessarily expensive sometimes amounting to exploitation. It seems that ‘guarantees’ are sold at a premium. Consequently you will find GF potato crisps and nachos in the FreeFrom range when most of the potato crisps and nachos elsewhere in the supermarket (being made from potato and corn respectively) are also GF but not ‘guaranteed’ as such. These might be for sale at as much as perhaps a third of the price. I go for these but watch out for the flavourings.
Similarly porridge oats, oat based biscuits for cheese and oat based muesli in the FreeFrom aisle can be avoided with minimal risk and common sense. I make my own GF muesli from packs of organic Irish porridge oats and bags of dried fruit, nut and seed mix.
Always check the ingredients. Even on foods you feel sure about. Recipes can change without warning. Also factories processing foods, particularly cereals can be affected by cross contamination remarkably easily. You must decide for yourself what level of risk you can tolerate. If you are Coeliac then taking risks is not an option since actual physical damage to the bowel lining would be caused. In particular if newly diagnosed with Coeliac disease, be cautious with oats. Whilst oats do not contain gluten they do contain a similar protein called avenin which causes the same symptoms in a few cases.
The Coeliac Society is a great resource for NCGS sufferers. In particular they have a scheme for recognising specifically approved restaurants which is well worth checking.
There is still a lot to be learnt about NCGS. The latest scientific research at the time of the last revision of this article (2020) from at least three organisations seems to be coming to the conclusion that there is still an auto-immune response happening but a systemic one following leakage of gluten (or a substance associated with gluten) abnormally through the bowel wall.
Finally it is obvious that, aside from the benefits arising from more research, the level of care in the NHS could be radically improved with what we already know if only our NHS was not so poorly managed and underfunded.
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