As a kid, I was eating mainly carbs and fats and lots of fruit, but very small amounts. I was a tearaway with ADHD so I was burning through energy like no tomorrow. As a result, I was a pretty lean kid and my dieticians expressed concern that while I was a tall child, I was pretty light.

As a result, I was put given Calogen supplements which I took in the form of a milkshake with a beautiful zero-protein fruit ice cream called Nectacream. While the Calogen suppliments had their desired effect (I went from a lean skinny lanky kid to a reasonably solid and well-padded youngster) the company that made Nectacream folded, and that was the end of that. It saddens me that Nectacream doesn’t exist today – I’m sure it would have made a killing as a PKU ice-cream if it had gotten the global exp

osure the internet may have been able to afford it. Rest in cold, creamy peace, my long-lost friend.

Anyway, I was around 73 kilos going into college and struggling with my diet. I was taking my Aminogran supplement less and less because the morning doses made my breath smell horrible and I quickly spun out of the habit. In a bid to teach me some responsibility, my mother made me make it for myself. It backfired and I just stopped.

So I went off diet for a while – approximately five years. During that time I found college extremely difficult, and my life was somewhat turbulent. Needless to say, I made it through college and into university. My first year was typical – wild parties, lots of alcohol and lots of bar food – I developed a ‘healthy’ taste for garlic bread and fries, and spent many a sunny afternoon with my textbooks, beer and snack food. After a fun season during my final year of college, I went back to rugby and played in an Under 85 kilo weight grade. Due to my lifestyle and my regular dinner (pork crackling + mash potato + oven fries) I put on a lot of weight, and soon found myself weighing out of my games. After some problems with my then on-again off-again girlfriend and being forced to watch most of my team’s game from the sideline, I became pretty down. The fact I was not getting anywhere near what my body needed in terms of nutrition was no doubt a contributing factor.

Things culminated when a series of high blood test levels and my regular appointment at our national metabolic clinic saw me faced with the very real possibility that I was doing myself serious damage, and my B12 levels were a cause for concern. I knew I had to take my Amingran more seriously, but I could not get myself into the habit of making it. Thankfully, I was introduced to Easiphen, which our national pharmalogical body was contemplating funding.

In the four years that have followed, I have gone from being disorganised, irresponsible, clueless, incapable and dangerously incompetent with my diet to having a really good handle on it. My extra weight, which was putting me at risk of a series of other problems such as high cholesterol and diabetes is now firmly under control. I have regained a svelter figure through an aggressive low-cal diet with rigid Easiphen intake and have re-registered for the Under 85 team I had to effectively walk away from in 2005. I’ve gone from 103 kilos to around 81kgs, and there’s more to come off. I’m also trying to build some muscle mass, although the low protein diet is proving to be a bit of a stumbling block in this regard. If anyone knows of any good suppliments for this purpose, please message me! I love to cook and while I am getting very good at making breads and pizzas, I also enjoy some treats like popcorn in grapeseed oil (absolutely beautiful!).

I’m proud to have PKU. It’s no longer a stumbling bloc, it’s something that I know know a lot about and have read many things on. Understanding my condition has helped me take care of myself and given me something to be proud of.

I’m sorry for how long this is, but there is a silver lining to going back on the diet. If you’re on it now as a teen, for the love of all things awesome, stay on it! Learn to cook for yourself using things like LoProfin and discover the small wonderful things about your condition that other people don’t get to experience. Most other people will rarely smell bread fresh out of an oven – PKU lets you do that all the time! You can also make scones, pizzas and all sorts of wonderful goodies with relative impunity! I love the taste of my baking, I look forward to mucking around with recipes and it’s pretty much the most rewarding skill I’ve ever learned. And there’s nothing wrong with learning to cook – I’m a 22 year old rugby-playing New Zealand university student, and I consider myself to be every bit as rugged and articulate as the next Tom, Dick and Harry.

While I was lucky to have a seemingly mild case of PKU and to not have done too much damage during my more care-free years, I can assure you that life with PKU is far more enlightening and interesting – and ultimately more rewarding – if you have tale the time to understand the science behind your condition, how it works, what you can eat and how it can affect how you live your life.

Best Wishes

Dan

Below is just a little bit of advice. If you are planning a big trip, speak to your local doctor first.

The first thing you should do, whether you are traveling abroad or close to home, is locate a doctor in the area you will be visiting. There are several organizations available to help in your search or you can simply ask your doctor for referrals or best yet, good old Google!

If you are taking prescription medication, you should be sure to take plenty for the duration of your trip. You should also keep it with you when you travel on the plane to avoid it being lost like luggage can be. Always keep your medication in its original container and carry a typed statement from your doctor regarding what medications you are taking and what they are for. You will also need to get copies of all of your prescriptions, including foreign names, in case you have to refill them abroad. However, you should avoid this by carrying enough medication with you, as filling prescriptions in other counties can sometimes be difficult.

A common ailment among travelers to less developed countries is known as “traveller’s diarrhea”. This can be especially dangerous for sufferers of Crohn’s Disease and special care should be taken to avoid it from occurring. Basically, traveller’s diarrhea occurs from the ingestion of water or food that is not as stringently processed as in more developed countries. Steps that should be taken include being very careful about what you eat or drink; do not drink water unless you boil it; avoid drinks made from tap water, like tea or juices that may have been mixed from concentrate; use bottled water to drink and to brush your teeth with; avoid ice, ice cream, and uncooked fruits, vegetables, and meat; avoid diary products as they may not be pasteurized; and do not eat any questionable food. If you become affected with traveller’s diarrhea, take an over the counter medication and be sure to intake plenty of fluids to avoid dehydration.

Also watch for signs of a medical emergency, such as high fever or chills, which may be a sign of infection; profuse rectal bleeding; extreme abdominal pain; dizziness; or dehydration. If any of these occur, seek medical attention immediately.

Following these basic rules will help you enjoy your travelling more as a lot of the stress and worry associated with travelling with a condition such as crohn’s will be taken out of your trip.

Happy travelling!!

John first fell ill at 19, but he just attributed it to the excesses of his life as a university student. Six months of acute stomach cramps later, he had lost almost two stone and was suffering extreme fatigue.

When the problem first arose, John recalls, ‘I was experiencing terrible stomach cramps, not unlike food poisoning, and on a bad day going to the toilet up to ten times.

‘When I started university I was 12st,’ he says. ‘But by my second year I weighed around 10st, and looked pretty skinny at 5ft 8in. I was pale, tired all the time and had dark circles under my eyes.’

Finally John was diagnosed with Crohn’s disease after a colonoscopy and blood tests. Crohn’s is a condition where the body’s immune system attacks the digestive tract, causing damage and inflammation. The illness most commonly begins between the ages of 15 and 25.

People diagnosed with the debilitating gut condition often have to look forward to a lifetime of medication and even surgery, with an increased risk of cancer.

The first line of defence for most adult sufferers is usually powerful antibiotics to battle infection, drugs which reduce inflammation, and immune-suppressant medication

These are drugs which carry a host of side effects such as weight gain, mood disorders, serious infections and an increased risk of cancer of the lymph glands.

However, eight years after his diagnosis, John, who is one of 60,000 Crohn’s sufferers in the UK, is free of symptoms – and this is despite never having had a single drug treatment.

John leads a very active life which has seen him run the New York Marathon and regularly play club rugby. This breakthrough has been achieved thanks to a simple diet.

This is thanks to gastroenterologist Professor John Hunter and his team at Addenbrooke’s Hospital who identify foods that act as a ‘trigger’ for symptoms, eliminate them from a patient’s diet and ’switch off’ the disease.

90 per cent of Professor Hunter’s patients are symptom-free and 56 per cent can resume a normal diet after five years.

To read this article in full, please click here

Researchers have identified new genetic markers for Crohn’s disease and ulcerative colitis in a study they say provides further evidence that people of Ashkenazi Jewish descent are more likely to develop the conditions.

Up to 30 percent of people in the United States with inflammatory bowel disease (IBD) have a family history of the condition, and about 25 percent of those families have histories of both Crohn’s and ulcerative colitis, according to background information in this multi-center American and Canadian study. People of Ashkenazi Jewish (eastern European) descent are at least twice as likely to develop a form of IBD and are more likely to have a family history of IBD.

Crohn’s is most frequently characterized by inflammation of the final section of the small bowel and parts of the colon, while ulcerative colitis involves inflammation of the internal lining of the rectum and colon.

In this study, researchers looked for DNA variations called single nucleotide polymorphisms (SNPs) in 993 families (244 of whom were Ashkenazi Jews) with Crohn’s and ulcerative colitis.

Among those of Ashkenazi Jewish descent, the researchers found evidence of genetic markers for familial Crohn’s disease on previously identified areas of chromosomes 1 and 3. They also pinpointed a previously unidentified region of chromosome 13 in both Jewish and non-Jewish families with Crohn’s.
The researchers also identified areas on chromosomes 2 and 19 that may be related to ulcerative colitis in both groups.

The findings were published in the March issue of Genes and Immunity.

Until now, no gene regions implicated in IBD were specific to Ashkenazi Jews, and there was no genetic evidence to explain why they were twice as likely to develop the disorder, said study senor author Dr. Steven R. Brant, a gastroenterologist at Johns Hopkins.

“This increased risk for some Jewish people makes our study and results especially significant, since this is the first sample size of Jewish families, 244, that was large enough to identify novel gene regions for familial predisposition in this ethnic group,” Brant said in a prepared statement.

Over the years I saw a number of doctors and specialists (although never a GI specialist) and had numerous tests done. But no one was able to figure out what was wrong with me. I felt horrible all the time and there wasn’t anything anyone could do to help me. I had to be home schooled due to the fact that I was not well enough to attend school regularly.

In October of 2004, my illness got dramatically worse. I was having bloody diarrhea more than 20 times a day and, aside from frequent trips to the bathroom, I was barely able to get out of bed for a month and a half. In addition to this, I lost 10 pounds (putting my weight at under 7 stone) as a result of being unable to eat very much during that time period. I was in so much pain it often hurt my stomach to breathe. My mother insisted that I go and see my doctor, even though I felt as if I were to weak to attend the appointment. We were expecting him to do some tests to try find out what was going on and to check my blood counts, but he said that wasn’t necessary. He told us he could already tell that I was “profoundly anemic” and that I most likely just had a really bad case of the stomach flu on top of the other health problems I’d already been suffering from. He placed me on a bland diet and said he would call in a few days to see how I was doing. I started getting fevers and my condition continued to worsen, so I ended up having to go back to see my doctor later that week (even though at this point I was really barely able to walk). He finally ordered a whole bunch of tests and it took hours to do them all. When we got home I was so exhausted I just collapsed on my bed. At around ten o’clock that night, we received a call from my doctor; he said my blood counts were so low that I would have to go to the hospital that night. I ended up needing three blood transfusions and was told that most people would have died if there blood counts were as low as mine were. I was up most of the night answering all of the doctors’ stupid and annoying questions, having more tests done and getting IVs put in. The doctors still weren’t sure what was wrong and did a bone marrow test the following day. Then I finally saw a GI doctor who, after doing both a sigmoidoscopy and a colonoscopy, diagnosed me with Crohn’s Disease. After spending two weeks in the hospital getting IV medicines and fluids, not being allowed to eat anything, and drinking a lot of horrible tasting nutritional formulas, I was sent home on 20 pills a day. I was still in a lot of pain and had a very low blood count.

After my diagnosis, the doctors told me that I would start feeling better really soon, since they finally knew what was wrong and would be able to treat my illness. Unfortunately, that has not been the case. Since my diagnosis, my illness has only gotten worse. I have been in the hospital many times and have been on extremely high doses of Prednisone. During my longest hospital stay I was there for over a month (which included both Christmas and New Year’s) and things got so bad I nearly required surgery. My doctor says I have very severe case of Crohn’s. I have never had a remission and have had bloody diarrhea pretty much non stop for three years. In addition to the stomach pain, I also suffer from joint pain. This combined with the anemia and fatigue, often makes it difficult for me to lead any kind of an active life. I have tried a number of different medications for my Crohn’s, none of which seem to help much. And most of the pain medications don’t really help either. I find it unlikely that I will ever feel better, but I still want to get on with my life. I finished secondary school with 4 A-levels and I would like to become a doctor someday, so I can help other kids with chronic illnesses.

Crohn’s disease isn’t caused by an infection and you can’t catch the illness from someone else.

The prevalence of Crohn’s disease ranges from between 50 and 100 people per population of 100,000. The incidence ranges from between 5-10 people per population of 100,000 per year. These variations are dependant where you live and your ethnicity.

It is most common in individual aged between 15-30 years but also has a high prevalence in people between 60-80 years. The symptoms of Crohn’s disease are variable, but they are likely to include diarrhoea which may be bloody. The individual will experience abdominal pain, loss of appetite, weight loss, tears, ulcers or abscesses around your anus.

It is still not fully understood why you may develop Crohn’s disease but it does tend to run in families. Smoking will increase the risk of developing Crohn’s disease. High sugar and low in fibre diets may also increase the risk of developing Crohn’s Disease.

Unfortunately there is no cure, so treatment is designed to increase your quality of life as much as possible. It may be a special diet or medicines. Severe cases may require surgery.

There should be no reason why a person with Crohn’s disease should not be able enjoy life to the full.  The need to have easy access to toilets may be their primary concern. With some careful planning individuals should be able to travel wherever they want to.

Please help increased the awareness of individuals with Crohn’s Disease.