The Right Prescription
The Right Prescription
As one of the many cystic fibrosis patients around the globe, I think we can all commonly agree that medication and treatments have generally come a long way in the last thirty years or so. Especially for patients in nations who provide them with affordable access to healthcare. Upon my diagnosis back in 1999, at seventeen years of age, I was understandably devastated, but had faith in the Irish healthcare system to look after me in the coming years. I was fortunate to live in a country which offered free healthcare and all my treatments and medications were covered financially. In the 25 years since my diagnosis my circumstances have changed for many reasons, mainly backpacking and relocating permanently to another country, Spain. Here, I have been placed under the care of a different healthcare system, and as I age, my needs and requirements have changed. As I get older, and my body changes, it’s time to ask the question? Are my medications doing more harm than good? What really am I putting into my body and can the right prescription be the wrong prescription?
The Right Prescription Conspiracy or Cure
When I was diagnosed with cystic fibrosis at the late age of seventeen back in 1999, it was a shock. I had heard about the illness but knew nothing about it. That was all about to change on a summers day back in June 1999. After some testing the positive sweat test I performed changed the course of my life. Seventeen years of age is already a difficult enough time, the last year of childhood before you turn eighteen and can legally vote, drink and make adult decisions. I was also coming into my last year of secondary (high school education, so future plans and goals would need to be reassessed.
To be honest, I was quite relaxed about the diagnosis. As I have discussed in previous blog posts, I was feeling unwell for many years and living with a daily cough. I knew deep down something was wrong with my body but just lived through it. My diagnosis for me wasn’t a death sentence but a chance to control my symptoms and feel better. The first step was to see the specialist who could explain further what this illness entailed. I was told I would need to take medication for the rest of my life, but again, this was a small price to pay in order to feel well.
The first medication I was prescribed was Creon 10000. For those of you who are unaware about what cystic fibrosis or this medication is, I’ll give a brief outline. Digestive enzymes are made in the pancreas. The fat, protein and carbohydrate in food is broken down by the enzymes to release nutrients. In cystic fibrosis (CF) sticky mucus blocks the passages from the pancreas to the small intestine which stops the enzymes working, so the food cannot be digested or absorbed by the body. This is called malabsorption and causes loose or oily stools, wind, stomach ache and poor weight gain. All food and drinks containing fat, including nutritional supplements, require enzymes. Enzymes need to be in the stomach at the same time as food. Enzymes should be taken at the start of a meal or snack. If you are unsure how much you will eat or the meal has several courses, the dose can be split, if you forget to take enzymes at the start of a meal, it is not too late to take them at the end of the meal.
Of all the medications prescribed, Creon was the medication I became most familiar with as it needed to be taken with each meal, for me an average of 12 to 15 capsules per day! I didn’t question the doctors and knew I needed to build myself up and get stronger. Thanks to Creon I added some much needed weight to my bones and slowly began to feel better. As the years passed I had taken my medications without any issues. The only issues I had were when I was backpacking around Australia, Asia and Central and South America. Having to declare the medication at each border crossing and ensuring I had enough for my travels was the biggest worry. Fortunately I was able to navigate through these issues and continue to take my medicine.
The Right Prescription Listen to Your Gut
Fast forward to 2017, I had now turned 35 years of age and had just returned to Ireland after two years travelling the world. Perhaps it was the difficult readjustment, and lack of employment opportunities upon my return, but my health suddenly took a turn for the worst. My lung function and energy levels were quite good, but unbearable pain suddenly struck my abdomen one weekend. This can happen with cystic fibrosis, but this was a pain I never experienced before and it wouldn’t go away. Sleeping was difficult, and general everyday living, as my mood suffered due to the pain constantly being there. After a colonoscopy, my first ever! they discovered some inflammation in my colon but no true explanation was given why.
At this point we decided to relocate to Spain to try out a new life away from the cold and damp climate of Ireland and the frustrations of my lack of employment progression. Seeing the blue sky everyday immediately was a boost, despite a long process obtaining Spanish healthcare cover. In the meantime my stomach pain continued at times so the problem remained. I had to start getting to the root of my issues so analysed everything that went into my body, from the water I drank to the food I ate to the medications I ingested. I had noticed that after I drank some beers my pain would flare up. Not that I was a huge drinker, but I did like to have a beer or two on weekends. One or two were fine but at parties and celebrations two lead to three and you know the rest!
I cut out the beer, which seemed to work, but the pain flared up again last winter and lingered for a couple of months. Again, I had a colonoscopy, but again nothing showed but inflammation. In this time I had taken allergy tests and have shown a sensitivity to dairy and wheat products. An annoyance, but I have cut most of them out of my diet without too much issues. The one thing that hasn’t changed in twenty five years is my intake of Creon. I am now on 25000 strength, but have started to change how I ingest the medication. Perhaps it was a lot of misinformation around Covid and the much debated vaccines, but I did start to question all the medications I was ingesting daily. Obviously they were working for me as I generally felt well, but all medications can have side effects, many not becoming noticeable for many years.
The Right Prescription Release the Guinea Pigs
Let’s face it, most of use who need medication each day are human guinea pigs! Most medications have been scientifically developed in the latter part of the last century or this. This is quite a short period of time in the grand scheme of things. There have been many drugs trialed and tested which sadly had fatal consequences. As I get older with this illness I am grateful for the new medications which have become available for cystic fibrosis, as they have clearly helped me feel better than before. For one, I rarely cough anymore, which was the tell tale sign of cystic fibrosis which I carried around for years! On the flip side I have started to question many of the medications I take and regularly ask myself, can I do more?
I won’t get into the whole debate over Covid and the vaccinations. I have written some blogs in the past which will express some of my views. Sadly, I believe these vaccinations were a complete and utter nonsense and will unfortunately pose a risk to human health for years to come. I refused, and will refuse these vaccinations in the future, but that is my personal point of view. I am not going to recommend or dissuade people into getting them, your body, your choice. The whole process of alienating those who didn’t wish to take the vaccine did leave a sour taste in my mouth however, and I did begin to question the medications I take daily along with many of those so called experts in the medical profession. I am quite fortunate that I do not need to take many medications daily, just a few pills. As Creon has been the one medication I have continued to take since diagnosis, I did start to think about it more.
Since the beginning of 2024 I have started to take Creon mixed into my food without ingesting the outer shells, which I remove. Why you may ask? For me the shells ingredients do pose a worry. The shells for the CREON 3,000 USP units of lipase strength capsules contain titanium dioxide and hypromellose. The shells of the CREON 6,000 USP units of lipase strength capsules contain FD&C Blue No. 2. The shells of the CREON 12,000 USP units of lipase strength capsules contain black iron oxide. The shells of the CREON 36,000 USP units of lipase strength capsules contain gelatin, titanium dioxide, sodium lauryl sulfate and FD&C Blue No. 2.
The Right Prescription The Road to a Cure
We now live in a world of fast food, convenience and generally a lack of time spent in nature, which goes against our human instincts. Our bodies are now processing foods which have been manufactured and developed in laboratories. Now when people are sick they reach for tablets and medications to solve all their issues when the real cures can lie in our cupboards. I try to eat as fresh and natural as possible but sadly this comes with a higher price tag. Just look around your average supermarket where it is much cheaper to buy processed, fast food than it is healthier options. Don’t get me wrong, I love to tuck into a KFC or McDonald’s where possible, but not everyday. I have noticed as I get older my bodies tolerance for these foods has lowered. Perhaps I have gone soft or I am finally listening to my body after all these years! As a teenager and in my twenties I could easily polish off a large amount of food. Hamburgers, chicken breasts, barbecue ribs etc. washed down with a few beers or coca cola. Now if I tried it I would look six months pregnant and feel rough for days!
Growing old, particularly with cystic fibrosis has been a privilege, especially when I never thought I would live this long! It does come with it’s drawbacks however and diet is a major one for me. I have tested for allergies and irritants and discovered wheat products, rice and dairy do impact my body negatively. I had cut out dairy for many years but rice was a real surprise, particularly for a sushi and asian food lover like myself! Cutting out these food groups has given me extra energy and I do feel better. In the past I would be the first to maybe raise my eyes when someone at the table had a food allergy, I now understand that these allergies can have a major impact on people’s lives. We live in an era where we can eat from all corners of the world in one day, but our bodies may not be able to process many of these new ingredients.
I firmly believe that doctors and healthcare professionals moving forward should be looking into people’s diets when patients seek help. Yes, some serious illness will most likely need aggressive treatments such as cancer. Things like recurring headaches and generally feeling unwell could be linked to diet. Growing up in Ireland most families reached for antibiotics for minor coughs and colds, but we now know that most of these treatments are useless and have led to antibiotic resistance. For doctors it can be a real conundrum, when you are faced with a sick patient desperate for help the easiest option is to reach for the prescription pad and hope that prescribed drugs will help. In many cases the treatment will work but sadly addictions and bad side effects can occur.
So after twenty five years popping pills and procuring prescriptions how do I feel? Well I am still alive and kicking so that’s a good start! But seriously, despite my reservations and questioning medical science in the last few years I will be forever grateful to these industries that have produced medications to allow me to live a somewhat normal life, whatever that is! Behind these big pharma companies are tireless fund raisers who have helped bring better medications to the table. If I am a human guinea pig then so be it, if tinkering and testing these medications can lead to a cure someday then my job here is done. When I am gone to dust it will be nice to know that illnesses such as cystic fibrosis are a thing of the past.
For now though a combination of exercise, getting back to nature when possible and most importantly diet is the real key. In combination with medication it can help you get the most from your body. Car lovers obsess about the types of oils and fuels they put in their vehicles in order to gain maximum performance. Why don’t we do this as human beings? Just look at supreme athletes who can do extraordinary things at the Olympic games, mainly due to a strict regime and good eating habits. If most of us could take half of this then we would be on the right track, pardon the pun!
The right prescription doesn’t exist, we are all unique and what works for one won’t work for the other. What I am sure of is eating a little less and questioning what we put into our bodies won’t hurt us.
My Prescription
Eat healthier, more greens, fish and lean meats.
Exercise, run, play sport and lift weights, small or large.
Stress less, go for a walk, get into nature.
Get plenty of sleep.
Absorb some sunshine when possible.
Don’t always listen to those influencers on Instagram or Travel Bloggers!
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