Life with a Stoma by Angela

Introduction

When I was asked by my Consultant Surgeon six months on from having had surgery for Sigmoid Cancer, how I was coping with the stoma, I replied that whilst it was a daily disciplined routine, it did have its advantages!
“How many people could be at their front door accepting the post off the Postman and having a poo at the same time” I asked.

Though this remark was meant to be amusing and was taken as such, the fact that I could do as described, is amazing in its own right. The advances in medical science have given us a world where most procedures are possible and the general aim is to make us as new again. So it is with Bowel Cancer.

During the night of 24th August 2013 I was admitted to our local A&E department as an emergency. They suspected a burst appendix; they found a malignant tumour sitting underneath the appendix. I had been ironing curtains when I collapsed, completely unaware of anything wrong with me.

Some two and half years on I have had two major operations on my intestines, two six month sessions of chemotherapy, a colostomy and a wealth of knowledge of what is possible.

Support

The assessment prior the colostomy was very professional. I was given one to one time with a specialist stoma nurse. It was both practical and emphatic. One phrase she used constantly was;
“The stoma is not alien to your body, it is in fact part of you and for everyone it is different and personal; there are no rights or wrongs in how you deal with it.”

But of course deal with it you must.  Coming round from a long operation to find part of your bowel on the surface of your body and to know that it will now evacuate all the waste material from your bowel (you hope), Is an enormous learning curve. And in saying – you hope -your position has completely changed from not wanting to accept, to relying on, the stomas performance. It takes a team of dedicated medical staff to get you to a position that works for both you and them.
My area of Hampshire has some of the best. The hospital staff work from a broom cupboard, no really that is about the size of their allotted clinic space. They gave me such good advice and tips such as striking a match to get rid of unwanted odour, always have a mirror so you can see that the bag is fitted correctly. I cut my own each day as I like to be in charge and I have the time.

Day to Day

We have now moved from critical condition, i.e. the operation, to chronic condition, the maintenance of the stoma. Here we enter another world, from repeat monthly orders for stoma appliances, to settling into the daily routines involved.  Such as ensuring the bag is changed regularly while still seamlessly fitting into a work or social scenario.

I have to say that in a couple of respects I have been lucky. First I am retired so no work commitments. Also I now am a widow and live alone so no waiting for a free en-suite at 7.30 am! But one thing we all rely on is good communications with the providers of the appliances. I have a good relationship with my provider, but still one has to be proactive at times.

For example, not every day will the operation of the colostomy bag be perfect. This is 99% human error in that we either had a hot curry and copious glasses of wine the night before, or we did not fit or close the bag properly. I have been guilty of both these. As my wonderful community stoma nurse repeatedly tells me, everyone will do it once but only once. How true. But the more important point is that if you do not always have a backup kit with you, you are in big trouble.
So I have issues with repeat orders that send a box of thirty stoma bags per month. Out of a twelve month cycle only four months have thirty days. You only have to have a day when you need to change the bag more than once and over time the shortage builds up. This can cause anxiety to the patient The line of contact is good but step out of that routine and it becomes more difficult.

Therefore there is an argument for the line to be less complicated.  There are three companies involved in getting the monthly order to my door on the same date every month. But I the patient have little involvement in that. Maybe some patients find that fine. But we live in a digital age and time is of the essence for most of us.

Conclusion

How long, I wonder will it be before technology intervenes to play its part in giving a more flexible service for all participants. One that I the patient can be more involved in.

In the meantime I am living my life as I would wish the stoma hardly impacts on that, and I look forward to my life continuing in that vein. But should it not I know I am in good hands.  To be continued.

 

Angela from Hampshire