I would like to thank the SVEP and in particular Mr. Bernasconi for this opportunity to talk to the endoscopy personnel from a patient’s point of view. Unfortunately we hardly ever get a chance to talk to each other during the examinations, which is why I gladly seize this opportunity to express the patient’s perspective.

My name is Bruno Raffa, I am suffering from ulcerative colitis and have been working for the SMCCV for over 10 years on a voluntary basis. Our primary function is to inform patients and their families. But informing the public is just as important in order to let people know about chronic inflammatory bowel diseases and to better their understanding of our condition.

Explanations

My presentation is about the hopes, expectations and experiences from the patient’s point of view. I could considerably shorten my presentation by presenting the conclusions here and now:

1. Our hope is for colon cleansing solutions to taste delicious.
2. Our expectation is for the examination to be as pleasant and painfree as possible.
3. Our worst colonoscopy experiences we would not even wish on our worst enemy.

I have been living with a chronic inflammatory bowel disease for about 15 years, though I have been suffering from this disease for a lot longer. During these 15 years I have made many positive and a few negative experiences. It is difficult to generalize the patients’ condition, but in their “career” most patients have had very similar experiences with respect to the examinations in general and in particular to colonoscopies.

Christoph Knoblauch

The worst part of the illness – and I am sure of any illness – is the beginning, that is the time before the diagnosis. The diagnosis itself is not perceived as horrible news by most patients, because they finally know what is wrong with them and that there are certain treatments available.

But the examinations before the actual diagnosis were more difficult to bear. Be they colonoscopies, x-rays, MRI, etc. I was scared of these examinations. Scared of the pain and the sense of shame, but also of the discomfort after or during the exams.

The first phase of the illness was determined by insecurity, stomach aches and never ending diarrhoea. I didn’t dare leave my house, stopped going out with my family, not to mention go to work… When I started to get worse and could hardly keep any food or liquids, I was admitted to the hospital – against my will.
The time spent there was particularly difficult as well… The first examination was horrifying. The slightest touch on my stomach caused tremendous pain. I also underwent a rectal examination with this tube, but no further explanations were given to me. And the pain was unbearable.

But it got even worse…

After my blood levels indicated I had a massive inflammation it was clear that I would not be able to avoid a colonoscopy. I was prepared for the examination. I was given a photocopied sheet of paper indicating what I could not eat – as if I at that point I could eat anything at all…

The nurse brought me 2 liters of a colon cleansing solution. She told me to keep drinking the solution until it came out the same colour it went in. It tasted disgusting! Even after drinking two glasses I could not get used to it and soon I felt terribly sick. Each time I went to the bathroom I panicked looking into the bowl to check the colour of what I left behind. What a relief when it was finally „clear“…

To my great shock, the morning before the examination I had to drink another liter of the liquid. I couldn’t get myself to drink it, just smelling it made me sick to the stomach. There was only one solution: to flush it right down the toilet. At that point I thought the worst was over. I had no idea what I was in for.

I was brought in the examination room, where an enema was waiting for me. Everything happened so fast, I didn’t even have the time to ask why. After this interlude the nurse left me alone on the examination couch. No one was there, no nurse, no doctor. I was all alone, lying almost naked on the couch. And all around me scary instruments and cold, staring screens. I was scared!

"Instrument"

Soon the doctor would come in and I was lying there with my bare butt cheeks to greet him. That bothered me. Not that I’m prude or pudic, I just felt uncomfortable. Silly thoughts went through my head: “Just how many butts has the doctor looked at today? How many in his career? What does he think when looking at them?” I feel like I’m at his mercy…

Then the doctor made his appearance. He greeted me briefly and I immediately felt that he didn’t have the time, that his thoughts were somewhere else… He didn’t realize that I was afraid. He quickly explained to me what was going to happen. Sedatives, tranquilizers? Unfortunately, he didn’t mention them. I didn’t know I could have asked for some.

The cold, stiff tube felt very uncomfortable. The first attempt at introducing it procured the worst pain I have ever felt in all my life. Biting on my lips did definitely not help, I screamed. I asked for a sedative, anything, I just yelled “It hurts so much!”. The doctor said it would be over soon… I don’t know how long it took, but to me it was endless and unbearable.
When it was finally over, I was brought to my room. I was relieved, but still had the feeling that my condition only got worse. The flatulence was very embarrassing and I wondered “when will it stop?”. The stomach pain got worse as well and there was no way I could relax after the examination.

At least the colonoscopy was over and soon I had my diagnosis. The weeks following the examination I informed myself about the disease and learned that it was incurable. And that you should get a sedative or a tranquilizer during a colonoscopy.

By now you have probably noticed that my story is about a bad example of a colonoscopy. Unfortunately even today I hear about such horror stories. I am convinced that there has been much improvement during the past 15 years and that an experience like mine is an exception today. However, I would still like to address a few issues which can still be neglected today.

• Basic explanation of the colonoscopy (maybe even with a flyer). What is endoscopy? What is an air tube?
• What kind of pain will I experience?
• What else happens during the examination? What are the risks?
• Should somebody accompany me?
• Is it possible to get a sedative? What risks does this entail? Side effects? When will I wake up?
• Discomfort after the colonoscopy? Relapses? Flatulence?
• Talk about feelings of shame.
• How can I drink the colon cleansing solution? Are there any tricks? Do I really have to take it all over again the morning before the examination? Is there an alternative?
• Do I really have to drink 3 liters when I already have diarrhoea? Or when I have already lost colon parts in previous operations?
• Are there documentaries/illustrations on the subject?
• Am I really not allowed to eat anything the day before the examination? I am feeling nauseous if I don’t eat for 5 hours. What would be the ideal diet before the examination? What can I drink?
• Listen to the patients appeals: Will they hear me? Will I be able to speak or be fast asleep? Talk to the patient.
• Is everything really ok if the doctor says so after the examination? What about the lab results? Can you recognize tumors during the examination?
• Can I eat normally after the examination or should I choose a light diet? Is the intestinal mucosa intact?
• What else is there to consider? Do I need a recovery phase or can I go back to work straight away?

We’re approaching the end of my presentation. Of course there are many questions, comments and a lot of advice on the patients’ side. Fortunately, bad experiences are becoming increasingly rare, not least because of conferences like this one. Before I finish, I would like for you to take something along: our flyer. Please try to give it to your Crohn’s disease and colitis patients in the short time you spend with them. Because what is essential with this invisible illness is to not feel left alone.

And during a colonoscopy it is you, the endoscopy personnel, who are extremely important for us. Because you are there with us at all times and watch over us. You make us feel safe and reassure us. The „technical“ information is not as important, what is crucial is that you, as a person, are there to help us forget about our (maybe unnecessary) fears. And for that I thank you!