15 May 2012

I have been living with this disease for over fifteen years, this is about my journey.  Crohns disease is a inflammation of the digestive tract.  It has similar symptoms as ulcerative colitis.  Along with this condition they are sometimes both referred to as irritable bowel disorder or IBD.  They are often referred to as a Western disease.

My journey started with a flare up which left me utterly exhausted, I was barely able to leave the house and had no idea what was causing it.  I visited the GP and was referred to a consultant for further tests.  I was given the diagnosis of unspecified colitis at this point.  This was the first of many such visits to several different consultants in various parts of the country, I was moving about a lot at this time as the work I was doing was mostly fixed term contracts.  After a few years, many lesser flare ups, and many tests I was given a diagnosis of crohns disease.  I took steriods during the first and worst flare up and anti-inflammatories from time to time from there on for a few years, that is until I started to feel run down and lacking in energy without a crohns flare up.  I had various tests and it was established that my bilirubin count was raised, the GP concluded that it was probably a side effect of the medication I had been taking.  Around the same time I consulted the GP about my diet and was informed that what I eat has no effect on crohns.  This was a turning point for me.  The medication I was taking was now effecting other vital organs and how could a disease of the digestive tract not be effected by what you are eating.  I had established that the long term prognosis of crohns is not good, I was, at some point in the future, most likely to need operations on my digestive tract to remove unhealthy, worn out sections.  I was young, single with my future in front of me, I would not be able to enjoy this if I was struggling now.  I had an active job, working outdoors, although I in future I may not continue to work outdoors, I wanted to enjoy it walking, canoeing etc.

I then started to research alternatives.  This was the days before the internet was the mass of information that it is today, so it was not that easy.  In the end it was my Granmother who came up trumps.  She found someone who could do a food test which I hoped would establish which foods I should avoid eating.  The test, for me, was a turning point.  Sadly in my naivety, eagerness to find a solution and moving house I no longer have any information on who carried out the test or what kind of test it was.  I also did not ask why I needed to exclude my particular list of foods.  My list is:
cow's milk, tea, coffee, red wine, all citrus fruit, raspberries, cranberries, elderflower, tomatoes and peppers.  I am vegetarian so was not tested for meat or fish.  Cow's milk is only in it's raw state as milk or cream all other milk products (cheese or yoghurt) are fine.  So I started to exclude these foods from my diet, within a week I felt different and within a month I felt really well, my energy levels were good and the bloating feeling I had after every meal had gone completely.

I met and married my husband and five years after the test I got pregnant with my first child.  I had been led to believe that crohns often goes into remission during pregnancy.  As my crohns was very much in remission already I was not sure if I would notice any difference.  I got lazy about sticking to my diet and 7 months into the pregnancy I developed obstetric cholestatis.  This is a condition whereby the liver function is impaired and there are toxins in your blood as it is not cleaned properly.  A symptom is itchy hands and feet which are worse at night.  Sadly for me this led to a chain of events which ended four months later with me in hospital with a crohns flare up, unable to keep food down and a 10 week old baby who I could no longer breastfeed.  After a few days in hospital I discharged myself, I was there to be fed and nurtured back to health but the hospital was experiencing a prolonged power cut due to stormy weather and nearly every meal was cheese sandwiches.  After a period of soul searching as I was not longer able to breast feed, could I have done things differently, what if's, I realised that actually what was more important was getting strong and well and staying that way so I that I could look after my baby and be there for him as he grew up.

I now had a consultant who wanted to see me on a regular basis.  I returned to the hospital a few weeks later for a check up and again six months later, thereafter an annual check up or sooner if things got bad again.  A year later I had a colonoscopy (a camera that goes into your digestive tract) to check the extent of the crohns.  For the next few years I continued with an annual appointment.  It takes over an hour to get to the hospital, I would usually wait 2 1/2 to 3 hours to see the consultant and spend a maximum of five minutes with him.  Five hours per appointment with a young child, not my idea of a fun day out.  I then got pregnant again.  I was strict with my diet and the cholestatis did not return.  After forty weeks I gave birth to  a 9lb 11oz baby with a very thick cord and huge placenta (the midwife's comments not mine), I successfully breastfed and still am.   Now that I had 2 children I did not relish the thought of spending five hours of a day on a five minute conversation with a consultant to inform him that all was well.  I approached my GP.  I now have a blood test there with a follow up appointment if necessary (any abnormalities).  The results of the test are sent to my consultant along with a report on my crohns.

About a year ago I started to get itchy patches on my hands, after many months I established this was urticaria and again this was likely to be linked to my diet.  As part of my investigation into likely causes I came across information on histamine intolerance.  I was intrigued to see that on the list of foods that are high in histamine, many of them were already excluded from my diet to manage crohns.  Throughout my urticaria flare up my crohns stayed in remission.  My list of excluded foods has now got longer!  I have included all alcohol, pineapple, chocolate, food colouring, and preservatives sulphites and glutamates.  I am still not sure why I cannot tolerate coffee or milk.  I had given up drinking coffee many years before I had the test as I felt awful drinking it, the test results also indicated an extreme reaction to it.

I am aware that for some alternative treatments are seen as bogus and untested, but they have worked for me.  I will always be grateful for my dear departed granma who found and paid for my food test.  It started me on a journey which has given me the opportunity to enjoy my life to full and to become a mother to two children which she sadly never met.  My crohns has been in remission for over seven years and I hope it continues to stay that way and I live a long, healthy and fulfilled life.  Thank you for reading my story.

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