The dream of swimming
Or: How IryPump® S changed my Son’s Life
For some children, flying is their biggest dream. Whether through the air, to Mars or to the Moon. Not for my son Simon . For him swimming is the greatest. But as beyond reach as flying is for some people, swimming seemed to be beyond reach for Simon, because he was born with an incurable genetic defect.
During my pregnancy already, we learned that our child's spine was not fully developed. What would it mean for his later life, we could only guess at that time.
Simon* has a severe so-called Sacral Agenesis Syndrome. Depending on the type and extent, this illness has different effects. My son was born without a coccyx and a sacrum, his feet are severely deformed and he has no natural anus.
His life was characterized by countless operations, from the outset: urological procedures and catheter applications to treat his uncontrollable bowel movements, agonizing colics, and numerous other symptoms.
För vissa barn är drömmen att flyga den största. Sväva runt i luften, till Mars eller Månen. Men inte för min son Simon. Han drömmer om att simma. Men precis som omöjligheten att flyga, är det
As a mother, powerlessness was the most difficult thing to me
To see Simon suffering without being able to alleviate the agony was my greatest pain.
We tried a number of procedures for bowel rinsing and faeces control. They had to be performed on a daily basis, often lasted hours, and were sometimes very painful. None of them gave Simon real relief.
As Simon grew older, he was ashamed that he could not control his bowel movements and frustrated about being permanently dependent on someone’s assistance.
Watching him observing other children playing and wondering why he could not do the same as them was probably the hardest moments of my life.
At the same time, these were also moments that always led me to seek for new solutions.
Everything changed at a certain moment
We were collecting information about another surgical operation that would give Simon a better quality of life when a nurse specialized in stoma (editor's note: artificial anus) presented to us an electric pump for intestinal irrigation that was new on the market. The IryPump® S.
I admit that my hopes towards this little pump were limited at first. After an almost nine years of struggles, small victories, and bitter setbacks, I had trained myself not to expect too much as I had surrendered myself to powerlessness as a constant companion.
But of course we tried the pump; what did we have to lose? What followed then completely changed Simon's life - and so the one of our family.
Thanks to the pump, we have been able to reduce the former tedious daily rinses to one or two times a week. They are performed simply and painlessly. Meanwhile, Simon can do it himself and 99% trust that he has no bowel movements between the rinses so that he can completely clean himself without any assistance. This alone has boost his self-confidence unbelievably. Nights are undisturbed, so we can all sleep peacefully. His intestinal colic and bowel spasms have also declined drastically.
Simon can suddenly do things that were previously unthinkable, such as staying with friends overnights or even going on vacations. But swimming remained the greatest for Simon. He hardly likes anything more than gliding through water, with an ease of movement and a feeling of lightness.
What do professionals say about IryPump® S?
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Do you colostomy irrigation with your permanent left colostomates and what are the benefits for them?
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What do you think of the new IryPump® S intruduced during the Ostomy Congress ECET?
Since the IryPump® S, Simon's dream of swimming comes true. The concern about controlling his excretion is now part of the past. He trains four times a week in different clubs and participates in competitions on weekends. Not only in special clubs for children with disabilities, but even in very renowned Swimming Club that gives membership only by invitation to very talented swimmers. Simon wins bronze, silver and even gold medals.
Experiencing his pleasure of swimming and seeing his face beaming when he has triumphed is an infinite pleasure for me.
Simon has gained more self-confidence and joy of living, it is more than I could ever imagine.
IryPump® S has made Simon achieved his greatest dream.
I hope our experience will encourage others to try it and to achieve their dreams despite their doubts. Who knows: Maybe IryPump® S will even bring somebody to Mars or the Moon? I wouldn‘t rule it out.
*Name was changed by the editorial department
