I have MS, which has mainly affected my autonomic system, resulting in a neurogenic bowel. Unfortunately, many people today (whether they have MS or not) suffer with bowel problems. Constipation is often under-recognized as a problem, yet can really affect quality of life, and make for a miserable existence; frustrated, bloated, uncomfortable, embarrassed and ….really, really time consuming!
So first I tried lifestyle change
...in diet, exercise etc. However, many years later it became apparent that I was just not winning, and the problems just continued to get worse. It was starting to have an impact on day-to-day living.
I felt ashamed trying to hide it from my family, feeling it was something I should be able to control.
It reached a stage where I literally was unable to go to the loo at all, due to my neurogenic diagnosis, MS, so I HAD to do something about it.
Eventually, after quite a journey, my MS nurse referred me to the local continence team, and we began with laxatives, suppositories – you name it, we tried it.
In control again with Transanal Irrigation, after some training of course
I was introduced to Transanal Irrigation (TAI), with an electronic bowel management device. It was very daunting at first, being presented with a control device, attached to tubes, pump and water container. However, after meeting a specialist nurse who guided me, every step of the procedure was clearly explained.
The unit is incredibly easy to use and at long last I felt 'in control' again. I was able to make plans, regain some spontaneity and had more confidence.
All I need is a toilet, and I can go about my business in there like anyone else.
Ongoing phone and video support
The aftercare from the home delivery service has been incredible.
The support team are always there at the end of the phone ready to answer any queries or help solve those little issues you may come across.
We often use Facetime, Messenger or Whatsapp; this was especially helpful when I was still getting to grips with the kit – one of the support team is always able to walk me through it.
My advice for others: Don't suffer in silence
You are never alone in this, there is always someone you can turn to for advice when you are struggling, when it feels like nothing is working. I've been there.
It's given me my independence back, and when I've travelled, I take my TAI kit without having to explain what is in my little black bag!
Have courage and go for it. Give it time and you will get there in the end!
