How I Control My Crohn's Disease

At the start of 2009 I often felt like I was coming down with the flu, I would require days off work and swallowed too many flu tablets to stop the aches and shivers. I was always feeling out of sorts, sickly and had no energy. Not for a moment did I relate it to the fact it could be associated with my Crohn’s Disease. I presumed it was because I had a heavy workload and was not looking after myself properly. As well as my flu symptoms I was also suffering from a very painful shoulder and aches throughout my joints in other parts of my body. I was becoming increasingly annoyed with all this going on, because I like to keep fit and these symptoms were preventing me from doing my exercise.

It really takes a lot to get me to the doctor, despite the fact I was diagnosed with Crohn’s Disease in 1999. However, the pain in my shoulder was so debilitating that I gave in and went to my GP. She sent me to a specialist who deals with arthritis who prescribed me with a drug that I reluctantly agreed to take to help with my pain. I took the drug for a few months despite the fact it made no difference. Then one day I read the packet which stated: DO NOT TAKE THIS DRUG IF YOU SUFFER FROM CROHN'S DISEASE. I was pretty miffed by this because I had specifically told the chemist who filled the prescription that I had Crohn’s and the specialist and I had discussed this in great detail. This is one of the reasons I hate going to doctors. Apart from the medical merry go round which is often the case, I have, in my experience, been given prescription drugs that are known to cause more health issues. One drug in particular that my Crohn’s specialist wants me to take warns that it may cause Lymphoma! Needless to say I told her what she could do with that medicine!

Getting back to my story, I kept having these bouts of 'flu' and then my shoulder pain transferred to the other shoulder, and in the following months, I felt that I had arthritis throughout my whole body. A lot of my joints became inflamed and I became suspicious that Crohn's was flaring up again.

When I was first diagnosed with this disease, (incidentally not long after my brother took his life) I had been able to control it with the power of my mind, exercise and diet. However, over the years I became neglectful of my diet. This resulted in my Crohn’s flaring up and in my opinion, it was a combination of the flu tablets, the wrongly prescribed medicine, and my poor diet that resulted in my body giving in. So Crohn's hit me, and it hit me hard.

No longer was I able to run and exercise the way I used to. I felt like an old lady. I had more frequent episodes of the 'flu' and once it resulted in me having 8 days off work. I continued to struggle with the following symptoms

• Stomach pain
• Frequent visits to the toilet
• Shivering (flu like) and body aches
• Feeling exhausted
• Joint and muscle pain
• A terrible malaise

I felt that something was terribly wrong, however I had just started a new business as one of the directors of a recruitment company so continued to ignore my symptoms and struggle on with my daily routine.

One day whilst shopping I felt like I was going to collapse, I knew that something was very wrong with me, however, I am a stubborn woman and decided I would ignore what was going on and pretend I was OK. Once I had finished my shopping I decided to walk the 2km's home. Luckily on the way home some friends saw me when I passed their house and immediately put me in the car and drove me home.

Once at home I rushed to the toilet and was horrified to see how much dark blood passed out of me. Now I was scared. I knew I was in trouble and started to cry. Reluctantly I rang the hospital and the nurse told me to ring an ambulance and come straight up. I replied with "Can't I just walk it's only about a km from where I live?” She replied with, “No, call an ambulance!” So I called a friend instead who drove me up.

Even in a crisis my friend and I always manage to have a laugh. As we pulled up to the hospital, she said something that made me laugh, and I can remember saying to her, 'Don’t make me look like I am laughing as I walk in here or they won't take me seriously', so we both controlled ourselves, however I did feel and look awful.

The Triage nurse took one look at me and took me straight through to the emergency room for assessment. After the doctor examined me she told me I had go on steroids.  I have always said I would never take steroids so I argued with her, and argued with her over again, however she said I would have no side effects as it was just for a month, and she would put me on 30mg. The doctor arranged to admit me to the ward and when the nurse came and gave me the tablets I cried, but I felt so bad that I took them anyway.

After about an hour the nurse came back with a wheelchair to take me to the ward. I refused the wheelchair and told her I would walk thank you anyway. My confidence went downhill very quickly when the nurse asked me what Crohn's Disease was! Once I arrived at the ward, the station nurse asked my escorting nurse "where is the patient?" I replied "I am the patient!" and everyone laughed as they were not used to having patients walk up themselves –  as it turned out they had me in the geriatric ward and I am only in my late 40's!!!!!

The next day I was seen by the doctor and was given more steroids. It was then I found out I was not on 30mg of Prednisone but 60mg! I was livid with rage! I told him I would not take anymore. The Registrar insisted that on my release from hospital I would be taking 60mg of this stuff. I refused, and in the end he rang my specialist who agreed I could leave on 25mg.

I had done my research on this medicine and I didn’t want to be on it. It may suit some people but the side effects to me are too horrendous. Before my release from hospital I was warned by both doctor and pharmacist that I must not stop the drugs cold turkey. I took another dose for two days. By this time, in such a short space, I had started to develop a round face, my stomach felt fat and the fourth day, I became very aggressive and depressed. It was then I decided I would not be taking this drug ever again.

I booked myself in to see my GP and told him no matter what he said I was not continuing this medicine. He said that I could go off them since it had only been 4 days and he didn’t think I would suffer too much. I knew I might get some withdrawal symptoms from stopping them but nothing could have braced me for the night ahead.

I will admit that the steroids stopped my pain and symptoms almost immediately. I had forgotten what it was like to have a pain free body. I had to choose between my mental health or physical health. So I chose my mental health. This meant I had to find a way to get myself better, all alone without doctors. I chose to stop the steroids because they don’t cure the disease they only mask the symptoms and have dreadful side effects. If, being on them for a while cured Crohn's I may have considered it. This is my own personal opinion, and what works for me may not work for you. It is also my personal opinion that many drugs cause other problems, hence more money to be made by the pharmaceutical companies.

The night I stopped the steroids I suffered so badly, I wondered if I wanted to stay alive. My body ached, shivered, and I was suffering terrible pain. My stomach cramped and I didn't sleep. When I woke up I could hardly walk.

However, today as I write this, exactly a year on I am in perfect health. This is what I did. A few days before being admitted to hospital I had started a gluten free diet as I recalled when I was first diagnosed with Crohn's disease that's how I stopped the symptoms. I knew I had done it once so could do it again. I also believe in the power of the mind, and what you focus on you get. So I focused on the diet working and curing my inflamed body.

I told the people that are close in my circle to stop worrying and that soon I would be pain free. I told my boyfriend to 'watch this space' as I would be back to myself soon. In 8 days I was back to myself. It took enormous effort on my part and a very positive mindset. This is what I did:

My Anti Inflammatory Diet

Eat mostly these foods. I find it best to graze all day then you don't feel hungry. Green leafy vegetables, beetroot, carrots, ginger, avocados, blueberries, 6-8 almonds, tuna, sardines, olive oil, salmon, fruit (not bananas), eggs, Olive oil, chicken, organic meat, puffed millet

Take all these foods out of your diet:

The white devils i.e. rice, pasta, bread and sugar. Now this is hard, because these things are in a lot of food. With persistence you will adapt to it. There are some great gluten free foods including cakes on the market and it’s not as hard as it used to be. Also cut out anything with Omega 6 i.e. oils except Olive Oil, margarine and any processed foods. You must cut out WHEAT this is essential! Get into the habit of looking at labels and ask yourself every time you put something in your mouth 'is this going to cure me or make me sick?" Cut back on alcohol - I found some great low carb wines that I enjoy.

Take the following supplements

Take the following daily: Fish oil, mussel oil, slippery elm bark, zinc, pro-biotic and Aloe Vera juice 20ml morning (empty stomach) and last thing at night. Take a high dose pro biotic, 3000 mg fish oil and 2 mussel oil tablets and one zinc tablet.

Positive Attitude

Focus on what you want not what you don’t worry (i.e. when you worry you focus on what you DON’T want and you will most likely attract it into your life).

Good luck, I can be contacted via the contact page.

Disclaimer: I am not a health practitioner and my advice may not work for you. Please do not do stop taking your medication without seeing your doctor. I can take no responsibility for your health and you must do your own research. This is what works for me combined with a very positive mindset.

Debbie Carr is Recruitment Director with True Colours Recruitment and also owns and operates a professional speakers bureau.