Are you really Lactose or Gluten Intolerant?

Are you sure? I was convinced I was, instead I ended up fighting for my life.

I guess it started around eight years ago (2006) when my then girlfriend and now wife noted that after consuming dairy products I became bloated, experienced abdominal pain, gas, wind and diarrhoea.

It worsened in 2010 when it seemed bread was also a problem.

As the symptoms worsened I went to my doctors and they suggested keeping a food diary to monitor the problem and to identify problem foods. In late 2011 convinced I was coeliac I went for a test… but the results disagreed and the conclusion was that I was suffering from IBS with an intolerance to Lactose and Gluten. However after a while I noticed something quite alarming: Occasionally I could eat without problems!

“I wish I’d pushed all of my doctors more because less than a month later I was in intensive care fighting for my life.”

In 2013 my “intolerance” took a nasty turn. What had been mild gas (Burping) became physically unbearable and the only way to relieve the pain was to vomit. Yet I was in so much pain I couldn’t make myself vomit… instead I had to wait until my stomach could cope no more and would simply “ejected” it’s contents. Unfortunately every-time this happened and by sheer coincidence alone i’d also recently eaten tomatoes. There is some evidence that tomatoes can cause problems for some people but not with the violent symptoms I had. I visited my then Doctor and she said it was possible I had an intolerance to tomatoes, I wish i’d pushed her more. I wish I’d been clearer about the violent nature of the pain and vomiting… I was one very simple test away from the truth

I wish I’d pushed all of my doctors more because less than a month later I was in intensive care fighting for my life.

It was a lovely sunny July morning and I’d been to a local farm shop and tearoom with my wife and three month old baby son, I’d treated myself to a less than healthy organic sausage sandwhich. An hour later and I was stripped naked and in indescribable pain, vomiting into a bucket. I don’t remember removing my clothes. but I do recall being very hot and then very cold, and then very hot again.

“we need to tread carefully, we’ve lost too many like him recently”

I recall speaking and joking with the paramedics… at one point I almost didn’t go to hospital because the pain momentarily vanished. But I did go and was taken to A&E department at Nottingham University Hospitals Queens Medical Centre in Nottingham (In the USA you might know A&E as ER) the vomiting increased and seemingly would not stop, it didn’t seem possible that I could have so much fluid in my body and when the strange brown specks that looked like freeze dried coffee that the nurses told me was blood appeared I realised I didn’t! The last thing I remember before being quickly whisked away to intensive care was reaching out to hold my baby sons little leg: so tiny, perfect and unaware of the troubles around him. I was unconscious when a doctor told my wife “we need to tread carefully, we’ve lost too many like him recently”

I have vague memories of an ultrasound being taken, I remember nurses pleading with me to relax and try not to vomit. I recall a hushed conversation between a doctor and a nurse about my amylase count being higher than anything they’d seen before. I don’t really recall all of the tubes going in and thankfully I don’t recall the pain – they tell me that often when the pain is that bad you just don’t remember, I’m also fortunate that it wasn’t long before I was hooked up to morphine. But this was only the start.

“It’s Pancreatitis” the doctor told me. I don’t recall anything of that day other than this short conversation in which I was asked if I drank alcohol. “rarely”, I replied. “The ultrasound also showed you don’t have gallstones, the only other causes of Pancreatitis are alcohol and very rarely medication.” I’d had perhaps 5 units of Alcohol from January to July. The doctors agreed it wasn’t alcohol. It had to be one of my medications.

I don’t recall the pain or the screaming, but my wife assures me: I did scream.

I knew from school biology that my pancreas had something to do with creating digestive enzymes. I also knew Pancreatitis could be bad and would possibly involve surgery. And then darkness came, I either fell to sleep, passed out or my memory fades because my brain protects me from the pain. As I said before they tell me it’s common for your brain to protect you from these things. I don’t recall the pain or the screaming but my wife assures me: I did scream.

My memory of the next few days is very hazy, the pain and the morphine meant my brain was creating all kinds of stories to protect itself. I had moments of clarity followed by hazy memories. When you are conscious you quickly become aware that Intensive Care is a very noisy place. The machines are noisy, they beep and buzz and ring. The doctors and nurses are noisy, the very few visitors are also noisy… the patients however are quiet. They’re generally either unconscious or very heavily sedated or hazy from strong medication.* You don’t really think it can get any noiser, but it can: The buzzing and beeping becomes intense, it’s followed by shouts, calls and the noise of a very highly skilled hard working team of professionals who are not paid nearly enough. On a number of occasions the noise ended in tears and a look in the eyes of the doctors and nurses that I won’t ever forget. These moments always seemed to be very clear in my memory.

It wouldn’t be long before I was diagnosed with Severe Acute Necrotising Pancreatitis: I’d have to fight for my life not once but twice, undergo two surgical procedures and face feeding through a tube in my nose or stomach for the rest of my life. I wouldn’t see my son until he was almost a month older and i’d still be in hospital four and a half months later.

I really was not Lactose or Gluten intolerant and Tomatoes were definitely not the problem!

If you’d like to read the full story please read on in this and future posts!

“If they had tested your blood on a day you had been vomiting it’s very likely they would have been able to diagnose” Christian told us. Christian was a brilliant consultant and i’m told a brilliant Hepatology surgeon too. He had a great genial bedside manner and introduced himself simply as “Christian” My wife Angela had been talking to him about my consultation at the gastroenterology department at Leicester Royal Infirmary and their conclusion that I either had IBS or that there was in-fact nothing wrong with me. Naturally this revelation was a shock.

As the days went on my mind questioned what I was doing in this strange warehouse. “Why am I in a warehouse? what are all these strange machines”: I genuinely thought i’d been kidnapped. All recollection of a hospital was gone! My favourite nurse Robyn, or my Consultant Christian or of course my wife soon brought me back to a strange kind of reality.

“If we operate now the chances of his survival are low”

By now I was fighting a temperature of 40c (104 °F) at a temperature of 41c there is a risk of brain damage. However I was also at risk of multiple organ failure, respiratory failure, heart problems and septicaemia. At this point in my condition a quarter of patients do not survive. If some of the other complications were to arise the mortality rate could rises to 40% and only 6 out of every 10 patients would survive. I however was oblivious to any of this.

At this stage it’s a waiting game. Daily tests are taken, fluid and antibiotics are given and the rest is up to the patients body. My wife tells me the doctor explained “These days we know it’s a mistake to operate at this stage, we have to allow his body to fight and recover. If we operate now the chances of his survival are low” My family and doctors simply had to wait and hope my condition did not worsen. If it did they would have no choice but to operate, but to do so would be risky.

On intensive care you have one nurse for every patient, occasionally you have two nurses to a patient if the patient’s needs will allow it. The nurse sits by your bed or is always very close by. I only remember two of my nurses. I clearly remember Robyn (possibly “Robin”) she was very caring, In the absence of my wife she was a great comfort. In a state of delirium one night I pulled out the tubes in my nose that drained fluids from my stomach. I don’t recall pulling them out, just the look on her face afterwards as my delusional mind ranted while holding the warm wet and slimey tubes. “I’m so sorry, what have I done?” Many months later I wrote a letter apologising again. Robyn was young and the NHS and her patients are lucky to have her. It’s common for patients to pull all kinds of tubes and needles out and i’m sure she had seen it all before… however even in my morphine induced delirium I knew I should apologise.

One night I was told I was being moved to a High Dependancy Unit where it was one nurse to two, sometimes three patients.  The hospital had been giving me fluids, oxygen and antibiotics and it seemed to be stabilising me. Technically I wasn’t getting any better: I still had high temperatures and pain. But the vomiting was now controlled by a tube and I wasn’t getting worse! The first night on High Dependancy was very difficult: I was becoming more aware of my surroundings yet at the same time more delusional. Aware of my increased delusional state and the night terrors the doctors took me off morphine and instead gave me oxycodone. I’d somehow decided that the High Dependancy Unit or HDU was a centre for sleep studies and that i’d submitted myself for a sleep deprivation study. The following day is a blur. I realised i’d been given a private room and have vague memories of being told I was “going in the right direction”

On the second night in HDU I asked a nurse “why am I here” and “don’t you think it’s odd that the hospital is run by a university? and the completely delusional “why do the university want me and what are they trying to do to me?” That night I became aware of my catheter which was hurting and the fact i’d not been to the toilet or eaten for over a week. I don’t think I’ve ever been constipated in my life and I didn’t realise that day how important the act of going to the toilet would soon become or that four and a half months later i’d still be in hospital begging a higher power than any mortal man to “please, please let me go to the toilet”

To be continued

*A close friend who also happens to be an A&E nurse later explained that Intensive Care Doctors and Nurses don’t have to be quiet because the severe condition of their patients means they are likely unconscious and that getting the job done in the most efficient and productive way is more important than keeping the noise down!

Please Note: The above is my best recollection of what happened. I’m in no way an expert nor am I in any way qualified to best describe my symptoms or the clinical procedures related to this or any other disease or condition. Where I have quoted statistics or procedures I have often fact checked against NHS and BMJ (British Medical Journal) websites however I have not included these sources in the article (I may do in the future) Sometimes in verifying the NHS or BMJ statistics I’ve also checked similar recognised publications and associations in the USA, Canada and Australia.

If you are in any way concerned about your own health speak to a doctor.

 

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3 responses to “Are you really Lactose or Gluten Intolerant?

  1. Hello Martin,
    I saw somewhere that you had been ill but had no idea what had been wrong. What a horror it must have been for you, especially after just having a little one. I hope you make a full recovery and are back to your old self soon. Best wishes for your and your family.

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