Anna Kamma has VACTERL, a congenital condition that means that Anna has to catheterize, as well as use bowel irrigation. She tells us what impact this has on her daily life and how, through her perseverance, she decides herself when and where she goes to the toilet.
"Hi, I'm Anna, I'm 21 years old and I have VACTERL syndrome. That means that the left side of my body doesn't work as well as it should. As a result, I have abnormalities in my intestines, bladder and kidneys and I also have scoliosis."
What impact does this have on your life?
"I've had this all my life. Because of VACTERL I have had to catheterize daily and, with my previous solution, perform bowel irrigation twice a day. Fortunately, home care always comes along to help me. They prepare the things for me and if there is an issue of some sort, they always help me. I can always come knocking on their door."
How does bowel irrigation help you?
"Bowel irrigation with Navina Smart has given me back control of my own life, so I can basically empty my bowel when and where I want. It's better for your gut if you stick to certain times, so I do that as much as possible. I have, for example, problems tolerating heat, that causes problems with my intestines, which causes a lot of pain. Now I just grab my irrigation system and I go to empty my bowel - and then I am rid of my abdominal pain.
The biggest advantage of bowel irrigation is that I no longer have to worry about anything. I can meet up with friends and go places. That wasn't possible before. So yes, I see bowel irrigation as a big plus - I'm very satisfied with it."
You also catheterize, how's that going?
"You have to get over it. At some point you see the benefits of catheterization. It helps prevent bladder infections and you can actually go to the toilet normally. So in the end I'm very happy that I can catheterize and that it helps me – and that it works so well with the stuff I use for it."
How do your tools help with that?
"I used a different system before the bowel irrigation, but my intestines did not respond well to it. It hurt a lot and I didn't get all the stool out, so I had to go to the toilet again in the evening.
Now I use the Navina Smart. I saw it once on a video with a boy who was also doing bowel irrigation. Then I thought to myself "wow I must have that too", because it is automatic, the water flows in much more gradually, you just have to press a button and the device does the rest. Now I have much less abdominal pain and I no longer have to go to the toilet in the evening. It's a really good invention.
"Now I use the Navina Smart. I saw it once on a video with a boy who was also doing colonic irrigation. Then I thought "wow I must have that too".
"For catheterization I have been using the LoFric Elle catheter for a while now, the purple one with the handle. Before that I tried a few others, because yes, I also look around. But I always come back to LoFric Elle, because you can't see it's a catheter. I take it out of my bag when I go out to eat and I walk to the toilet and no one sees that I'm carrying anything with me. It looks like I have a pen in my hand, and it works very easily. Sometimes I don't mind if people see it, but sometimes, like when I go out to eat, I just don't feel like it.
I really like this catheter, it's handy, small and catheterization works very well. That's why I think this is a very nice catheter.
Do you have any tips to share when it comes to bowel irrigation or catheterization?
"Because I know it can be tough sometimes, I also want to pass on something to everyone who is in a similar situation. I always thought that I was the only one – and it helped me a lot to know that this was not the case. That's why I would be really happy if people find it helpful reading this.
Sometimes it will be tricky and it's hard to find motivation, I know how it is. But you have to keep in mind that it really helps to do it. I mainly focus on the positive things it brings and not on the negative ones. That helps me a lot. You get back your control over your body and you can decide when and where you go to the toilet. I no longer have problems with my intestines and no more stomach pains. So try it - you can do it!"
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