Crohn's Disease ~ Help for Sufferer's and Parents of young people with Crohns.

Crohn's Disease is somewhat of a modern dis-ease that is prolific in Western cultures, and characteristically is diagnosed in young people in late teens and early 20's.

Crohn's Disease affects the digestive tract in varying intensities and in some cases can render the sufferers life into a World of hospitals, medications, surgeries and a quality of life that is not worth thinking about.

This blog has been set up by a 33 year old male, Andrew, who has had Chronic Crohn's disease since the age of 18, has had 3 surgeries and been on most of the medications that are available in todays modern world. Today, Andrew is treated every 8 weeks with the infusion drug 'infliximab' (also called Remicade) and is in remission.

Andrew is a successful author and music producer who lives near Byron Bay in Australia and recently he was featured on the front cover of the 'Crohn's and Colitis Australia' Insight Magazine and also in the centre spread discussing what he has learned from living with a modern disease.

This blogspot is for patients who suffer from Crohns Disease to be able to contact andrew directly to have an understanding person to discuss their problems.

This Blogspot is also for parents of children with Crohn's Disease to be able to communicate with someone who understands and also learn some of the traps and pitfuls of early diagnosis.

Andrew can offer advice in the following areas;
* understanding the phases of being diagnosed with a disease (fear, denial, anger, fear, acceptance)
* diet
* emotional health
* experience with drugs like cortisone, methotrexate, imuran, sulphasalazine, MP6, infliximab
* coping with surgery, and other invasive hospital procedures.
* experience with acupuncture, massage, herbs, yoga and other eastern remedies



The following Text is a highly edited version of what Andrew submitted to the Crohn's magazine.

THE sad bit about Crohn’s disease and any of the other severe gastrointestinal diseases is that the people who really need the help are probably not reading this because they are in denial. They are not looking for help or doing research. They are probably hiding in a dark room somewhere wishing their problem would just go away.

I am 33 years old and have had Crohn’s since I was 18. I have endured more hospital visits, medications, therapists, surgeries and severe complications than I care to talk about. What I hope to outline here are the things I have learned along the way – and the learning curve is very steep.

So, what do they tell you when you get diagnosed? Not much really. Maybe things have changed, but one thing I found missing from the whole process was someone telling me how living with a disease followed similar stages as coping with grief: denial, fear, anger, depression and acceptance.

Once you are diagnosed with Crohn’s disease, you are more than likely put on cortisone and told to watch your diet. The rest of it is really up to you. No doubt your natural reaction will be to experiment with anything you think might help, including diet, lifestyle changes and alternative medicine. But what happens when they don’t work, and you continue to feel terrible? I know with me, denial set in. I pretended that I didn’t have the disease and just got on with my life as if nothing had happened. None of my friends knew I had the problems I was having. I doubt I am alone in adopting the sort of behaviour where you literally start denying your body, and even abusing it.

When you are in denial the symptoms get worse and this makes you angry. This whole process can last for years and result in you losing your will to get better, and even your will to live. In this state, I was starting to think I would never get better and that I was just going down in flames, destined for a short life, and I was OK with that … but it wasn’t true.

The symptoms got so bad that it was life and death, in as much as I had lost my will to live. Without me knowing it, my blood pressure was slowly dropping, and that could have been the end. Fortunately, I realised that it was up to me to get better and to change the way I viewed the disease, so I could change my thinking and get back to a naturally positive mindset that I maintain to this day.

The first step was realising I was in denial. The second step was having gratitude and giving thanks for what I had in my life that was excellent: my family, my lifestyle, my friends, a brain that worked ok, and a passion to do creative things.

Gratitude is a big part of the healing process. It is all about saying thank you. But when your life is crap and Crohn’s has taken over, what have you got to be thankful about? This is the challenge: to see it, acknowledge it and bring more blessings into your life.

Once you have done these things mentally and changed the way you view the disease, then it is a matter of doing what you can with your body. Learn to love your tummy, ironically the very thing that is causing you the pain. By ``love your tummy’’ I mean giving it attention, spending time with it, massaging it, breathing into it and generally learning to love your body again. I know I hated mine for years, but what good is that going to do? I would do whatever I could not to look at myself in a mirror and not put any effort into helping my body, and that had to change.

Breathing really helped with that, and I mean yogic breathing. If you look at your tummy, when you breathe in your belly should move out, but many people breathe in and their shoulders move up. Once you have mastered the art of the inward breath, you can direct it into your abdomen with precision and it is like an internal massage for you organs. It feels great. If you do work on this, it might be quite painful to start with, especially if you haven’t been focusing on your breath at all.

Diet won’t cure Crohn’s, but it sure can help, both in times of extreme flare ups, and also in times of apparent good health. It is pretty simple to do the right thing and prepare your own meals if you are listening to your body and intuition. If you are in denial you are more likely to not care what you are eating and probably put no time at all into preparing your own food. If you are tuning into your body, I am sure you will lean towards lots of fresh fruit and vegetables. If you are a meat eater, then eat it, but remember it is much more difficult to digest, and you might get just as much nutrition from a bowl of steamed vegetables, or a smoothie.

Changing my main meal of the day from 7pm to lunch time helped me a lot. I am lucky I can do this as I work from home. Most days I have a smoothie for breakfast, or some fresh fruit, then steamed vegetables and some meat for lunch, and something light for dinner, such as beans on toast or a sandwich. I drink oat milk, rice milk, and eat lots of pumpkin, broccoli and potatoes. I also eat lots of nuts, dates and dried fruit, and while I am not gluten intolerant, I avoid it where I can. I find high fibre excellent, and if I cannot get enough fibre I drink a glass of water with psyllium husks in it. For some reason coffee with milk in it messes me up, but long black coffee doesn’t.

If you are in a flare up, then hopefully you have worked out the benefits of smoothies and protein powders. Nuts and seeds are great in smoothies too. And water is essential for people with Crohn’s. I have also found fasting is also a wonderful tool. Try it for a day or two and just drink water. It will make you feel a bit rough while your body breaks down the toxins, but then you will feel a high and realise why pretty much everyone used to fast in the old days, sometimes for 30 days in a row!

Learn where the toilets are in your local area. Accept you have the problem, but be highly prepared so that it doesn’t cause you more stress if you get caught out. Have loo roll in your car/handbag, just in case and try and avoid situations where you can’t go whenever you need to.

Look at other things in your life, especially things that annoy you. Whatever it is, get rid of it and replace it with something else. For me it was the need for isolation and solitude, peace and quiet. It was only when I found that environment that I was able to feel more comfortable and start the healing process.

Other things that helped me were true love, sunshine, the ocean, job security, my own place to live, infliximab, laughter, yoga, relaxation music and quiet.

I hope this helped one person and I send my heartfelt gratitude to anyone helping people who live with an illness.