Living with Crohn's Disease

Health24 reader Daniel van der Spuy shares story about living with with Crohns Disease  in order to help people with the same disease.

I was diagnosed with Crohn's disease on 18 December 2008 by Dr. Grobler from Bloemfontein, although my symptoms had started long before that  but hadn’t been picked up by my doctor.

When I met Dr Grobler he did a colonoscopy and diagnosed me with severe Crohns Disease. He started me on medication immediately, namely Azapress (150mg per day) and Panafcort (80mg per day). This helped for a while until about February 2009, when things started getting worse by the day.

I was admitted to hospital for more cortisone treatments and tests and lost 25kg in a month. I was looking bad.

Dr Grobler got me into a medical trial for patients with Crohns disease but half way through the trial he pulled me out, as I was only getting sicker.

Out of the ten patients throughout the country in the trial I was the only one that the treatments didn’t work on.  By now my medical aid’s funds were running out and I had no money to keep on going to the doctor.  I told him that I won’t be able to come in anymore because I don’t have the money to pay him.

However he insisted that I go in when he called and offered to cover everything.

Many hospital visits

After that he did about 12 colonoscopies - without my medical aids approval. Most of them were without any sedation so that I could tell him where it hurt the most.

My colon and small intestine were both very sick and infected.

The doctor kept urging me to get a colostomy but I didn’t feel like I was mentally ready for that.

Then in September 2010, on my birthday, I was rushed to the hospital, a two and a half hour drive away from where we lived. After I have suffered from the worse pain I had ever felt, there were moments that I wished I could rather die.

They initially took me to the theatre for a scope to see what was going on, but that turned out to be a major operation which I didn’t expect at all.

A Dr Carl Streicher performed a hemi colectomy on me – removing about 45cm of my colon. Afterwards they said that they had never seen such a badly infected colon.

‘Best thing I ever did’

After the surgery it took me about three months to fully recover and my health started to improve, but I knew the operation wasn’t the cure for my condition.

And sure enough, not long after the operation, it flared up again.

Dr Streicher tried to postpone the colostomy and spent endless hours researching other alternatives as I really only wanted to do that as my last resort.

Overall I spent a lot of time in operating theatres -  10 times in 2011, eight times in 2012 and four times in 2013 before the end of February, where the 4th one was for my permanent colostomy operation.

The operation that Dr Streicher did on me was flawless.  I couldn’t have asked for a better doctor, and personally I don’t think there is a better doctor than him.

The operation it was mentally very tough on me and at one point I thought it was a huge mistake, but Dr Streicher assured me it was the only choice I had left.

With the help of God and my supporting wife I had postponed the operation for about four years.  In those four years both my children were born, so I have a lot to live for. But I was in constant pain for those four years and always in a bad mood, which affected my marriage and relationship with God.

There were weeks that I wasn’t able to leave the house before 10am in the morning because of all the pain and running to the bathroom. That started to make even more financial problems for our family as I was the sole provider for my family.

I was 27 when I was diagnosed and supposed to be in the prime of my life.

Advice for others

We don’t always understand why we have to go through certain things in our life that makes life difficult and hard. But there is always light at the end of the tunnel.

If I had known that the colostomy surgery would change my life in such a good way I would have done it four years ago. I see now that it’s not the end of your life; it’s the beginning of a new, healthier and better life.

With all the products and excellent staff from Coloplast it really gives you a great new lifestyle without pain and suffering.

I know how depressed the idea of a stoma can be, I went through it myself. But I am a living testimony that it does change your life for the better. And after you have done it you will see it, feel it and believe it!

Hold on and don’t feel alone through this. If you are considering the operation, stop considering and just do it.

I am a tradesmen and I still do everything that I used to do, some things even better than before. And the best of all is I am able to play with my children again and give the attention and love to my wife which I hardly ever could’ve done before the surgery.