A Mother's Perspective
How IryPump S helped Sam
My son Sam suffers from a rare congenital condition called Caudal Regression Syndrome or Sacral Agenesis in which there is abnormal fetal development of the lower spine (the caudal area). This is a complex condition with various levels of severity depending how much of the spine is absent ranging from partial absence of the tail bone regions to absence of lower vertebrae, pelvis and parts of the thoracic and/or lumbar areas of the spine.
In Sam’s case he was born with a missing tail bone and sacrum resulting in him suffering bilateral talipes, an imperforate anus, bowel and bladder deficiencies and other non-associated problems.
Initially, at 10 days old Sam was fitted with a colostomy until a back passage was successfully created at 6 months of age. After which, I worked tirelessly with Sam’s Specialist Nurses and Consultants to find a solution which would allow us to gain some form of continence control to increase his quality of life.
Various bowel management techniques were tried to attempt successful colonic washouts combining these with rectal enemas and oral medication but all had little success. These techniques were frequent (daily), lengthy (up to 4 hours) and painful, causing Sam a lot of distress.
Over the next 8.5 years, Sam was had various daily regimes, frequent excruciating bowel spasms, skin ulceration/breakdown, negative social awareness due to odour and limits to the activities he enjoyed due to his frequent soiling.
Due to Sam’s unstable spine and lack of pelvis we were advised he had to be closely supervised at all time to avoid permanent paralysis and the only sport he could take part in was swimming. Sadly, this was severely hampered by our inability to keep Sam “clean” and his daily medical routines.
Sam was also unable to attend family or friends for “sleep-overs” due to his heavy soiling (he was unable to clean himself/change his nappy) and the likelihood of him suffering excruciating bowel spasms.
The next option for Sam was to carry a further medical operation called the ACE procedure.
Thankfully our ever determined Specialist Stoma Nurse offered us the chance to be one of the first to use the B. Braun IryPump S electrical bowel irrigation pump..
The IryPump S Set is compact and very easy to assemble. It consists of the pump power unit, a water container unit (with a handy built in water temperature indicator), a tube system, the IryCone and power supply. These all fit into a small handy travel bag which was provided.
Sam was 9 years old when this pump was demonstrated and given to us to trial.
I offered to write this review as the use of this pump has had a remarkable effect on Sam’s quality of life and given us a less arduous and predictable Bowel Management regime.
What has IryPump changed for Sam and our family?
- The frequency of bowel irrigations has reduced from daily to 1-2 per week giving Sam “free” nights.
- These “free” nights mean that Sam has increased his swimming and has been selected to swim for not only a disabled club but an able bodied club. He now trains 4 times per week and attends weekend swimming galas without fear of soiling. He is winning gold, silver and bronze medals and beams from ear to ear every time he enters the water.
- Sam is 99% clean on the days in between irrigations (I believe this is because the constant pressure of the water provided by the electric system of IryPump can dislodge solid stools (“pebbles”) which the previous methods relying on gravity could not. This allows the irrigation process to reach more of his bowel and keep him cleaner for longer.
- As Sam is clean between irrigations he can change his own nappies and has become more independent in school and at home, this has had a huge impact on his self confidence.
- I can schedule irrigations so he is clean to enjoy sleepovers with his friends both at home but more importantly, for his emotional development, at their houses too.
- This system has made Sam less resistant to bowel washouts as he recognises the benefits but also he likes to control his irrigation with the control wheel of the IryPump to control the speed of the water entering his rectum, this means he is able to reduce and manage any discomfort felt.
- The frequency of his bowel spasms, although not eradicated, have reduced significantly.
- The compact travel case means it is easy to take on breaks away or on holiday. All you need is in the case – no more additional bags full of pouches, tubes, nozzles, saline etc.
- As a family it has given us much more quality time with Sam, it has been a delight to see him flourish with his new found freedom, independence and self confidence.
I cannot recommend this product highly enough and hope that if you are in any doubt about using it for your self or your child as I was, I hope that a summary of Sam’s experience using it may encourage you to give it a try.