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Living with Crohn’s Disease

Daniel van der Spuy shares his story on living with Crohn’s disease – The Struggles, The Stoma, The Solution!

Although the symptoms had been there all along, it was only on the 18th December in 2008 that I was finally diagnosed with Crohn’s disease.

When I finally met with Dr S Grobler, He immediately performed a colonoscopy and diagnosed me with severe Crohn’s disease. Until then, it had been a condition which had not been recognized by my doctors. He prescribed strong medication straight away which unfortunately only provided temporary relief for the next two months.

I was 27 years old and in the prime of my life!

As a young, hard-working, ambitious, South African man with a beautiful young wife and two beautiful children, I can’t but wonder and ask “why”?

In 2009, I was admitted to hospital for more cortisone treatments and Dr Grobler arranged for me to participate in a medical trial for patients living with Crohn’s disease. Out of 10 patients I was the only one on whom the treatment had no effect. In fact, I was getting sicker by the day and was removed from the trial.

At this point, my medical insurance was close to exhausted and I had nowhere to turn. I went back to Dr Grobler and told him that I couldn’t come for anymore treatments or tests, as I simply could not pay him. By the grace of God, Dr Grobler insisted that I continue coming in for treatment and he covered all my bills.

Twelve Colonoscopies (most without sedation so that I could tell him exactly where the pain was) later Dr Grobler urged me to consider a Colostomy Surgery procedure. I was too proud and did not feel mentally ready for this at all.

I was the sole provider to my family of four and we lived in a small town called Kroonstad in the Free State province of South Africa. The closest hospital with the necessary facilities was 230 kilometers away.

In September 2010, on my birthday, I was rushed to the hospital after having the worst pain I had ever experienced in my life. At this point, I wished I would rather just die. What was said to be only a scope turned into a major emergency procedure by Dr Carl Streicher and resulted in him removing 45cm of my colon.

Even at this point I was still not mentally prepared to have the colostomy procedure, despite it being highly recommended by Dr Streicher, who had spent endless nights researching alternative solutions without any luck. Soon after my hemi colectomy, the pain and the disease was back.

After visiting the Emergency room and operating theatres 21 times in the space of 3years, I had my permanent colostomy procedure done.

Dr Carl Streicher, one of the best in his field, executed a flawless operation, yet somehow I still felt that I made a mistake and struggled with the idea of living with a stoma. The only assurance I had was Dr Streicher saying that it was the only option I had left.

Four years of constant pain, bad moods, and the inability to work fully, had affected my income, self-confidence and my relationships with my wife, kids, and God. And in spite of everything, I also had a stoma!

I was well aware that this would change my life forever, but would never have guessed that this could make my life so much better. If I had known that it was possible to live a healthier, easier life after the Colostomy surgery, I would have done it right from the beginning.

Physically I was doing 100 times better and was living with a lot less pain, but this doesn’t mean that mentally everything was fine. Living with an ostomy has so many mental impacts on your life and is something you need to work through as you go. I took almost 3 years to make peace with the fact that I will be living with an ostomy for the rest of my life.

We do not always understand the process of getting somewhere or why we must go through certain things, but there is always hope, always choices to make. There is always light at the end of the tunnel.

Although the surgery did not heal my disease, I can work, I am healthy, I can go fishing with my boy, play silly games with my princess and spend quality time with my wife, making memories for our old age. I do things I never did before. I look at life from a different perspective!

Never let fear or insecurities limit your life, your dreams or stand in the way of reaching your potential. All of us have gifts that are bestowed upon us by the grace of God, whether we use it to the full extent or use it at all, is up to you. You are the ONLY person that can take your gift, and feed it.

Once you start putting your abilities (gifts) in action and step out in faith, it will start to snowball, which will amaze you day-by-day. We didn’t receive these gifts and abilities to hide them away, packed in a bag for later. Would a 6-year-old boy get a nice bicycle or toy for his birthday and safely put it away and keep it safe until he is 35 or 40? No, he will start riding that bike or play with that toy even if the wrapping is still on it. So why would you or I want to store our gifts for later?

One day we will all die, but every other day we won’t! You only have today, live it!

Daniel van der Spuy

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