Ineke is 66 and single and lives in the province of Utrecht in the Netherlands where the most important people in her life are her son and two grandsons. Being diagnosed with colon cancer in late 2017 was a low point, and she has gone through a challenging time. Now, however, she has started irrigating with Peristeen, and it has made her feel free and relaxed again.
In October 2017, Ineke found blood in her stool. At first, she thought she might have haemorrhoids, so she went to the doctor who made her an appointment with a gastroenterology specialist the same afternoon. It turned out that she had a malignant tumour in her rectum, and in late December 2017, she underwent a robot-operated surgery.
“Everything went so fast. But luckily my doctor played - and still plays - a major role in the whole process. I can always contact her. The same can be said for the stoma care nurse and the Peristeen Support staff.”
And Ineke has needed all the support she could get. Surgery was only the beginning of her problems. After the removal of the temporary stoma, which had been created after her initial surgery, Ineke had to go to the toilet very often, sometimes even seven times in an hour. Day and night.
“My entire rhythm was reversed. I could no longer make plans or go anywhere. I had to go to the toilet constantly. It was also completely unpredictable. It sent me on a downward spiral. I was tired already, and then I had to deal with this on top of everything. Of course, I was happy the tumour was removed, but I felt that my bowel problems tied my hands and feet.”
Looking for a way to get back on top again, Ineke read about LAR syndrome and irrigation on the internet. She started bringing up the subject with her doctor and said that she could no longer deal with the pain she was experiencing.
“Something had to change. She referred me to a specialist. I also visited a physiotherapist for pelvic floor exercises, but after three sessions it was clear to her that this was not the solution. After all, the semi-liquid stool is like moving ice… it just goes on and doesn't stop. Then a stoma care nurse showed me the irrigation system and explained it to me. The first time it didn't work, because it hurt me too much. A few days later, the nurse from Peristeen Support came to my home. Again, it was just trial and error, but it went well. She was so patient with me. It was not just about how to use the irrigation system, but so much more. I was able to tell my story and she listened to me. That really meant a lot to me. I'm still in the initial phase and irrigate every evening, but one thing I’ve found is that standing during irrigation is much more comfortable for me. It allows more space for the balloon.”
Ineke is thankful for the help she has gotten from Coloplast’s Peristeen support staff: “They call me, and I can always get in touch. They come up with suggestions if I have difficulty with something, for example the balloon. It makes me feel that I am not alone.”
The biggest benefit of bowel irrigation for Ineke is that it makes her feel free and brings her peace. It’s the little things, she explains, like just being able to walk out the door again and not being afraid that she needs to use the toilet. Not being afraid of leaking and having to go and change again.
“Before it completely controlled my life, both physically and mentally. I had worked in healthcare for 40 years. You think you will start to enjoy your pension and then you suddenly become ill. Luckily it gave me time to focus entirely on the illness and my recovery. To be honest, I am glad that I don't have to work while this is going on. Now I’ve left the misery of 2017 behind me. My body is slowly recovering, and I’m able to live again, appreciate things such as my lovely flat in the middle of the woods, my grandsons, music or English TV programmes.”
If there is one thing that Ineke wants to share with other people suffering from bowel problems, it’s that it's okay to talk about it.
“It’s okay to be a little angry – and don't be ashamed! Don't take it so seriously all the time. After all, we talk about someone that has a broken arm, right? Let's also deal with this issue normally.”
