My second Blog about life with and without a stoma

Some six months have passed since I last wrote up a blog.

It’s been a busy time and I am delighted to say that in October 2015 I got an all clear CT scan. So what next I wondered?  I was quite used to the colostomy and all involved with maintaining the stoma. So I wasn’t in any hurry to take the next step.

In fact when I saw my surgeon in November I was quite casual about it all. “If you cannot reverse “I said “that is fine I can live with this situation” But he gave me good advice as to why it should be reversed, if it can, mainly to do with my age.

At seventy five I may well get ill with something completely unrelated, like a fall, or a stroke, or God help me, dementia. In that event I would not be able to look after the stoma myself and would have to immediately consider a Care Home.

The date for the reversal operation was set for after Christmas. My surgeon was looking, hopefully, to the second week of January 2016. In the meantime I was to have a series of dilations to the bowel under sedation. The colon had narrowed at the point where the join had been made after a large section of bowel had been removed. It was not uncommon for this to happen; it is mostly due to scar tissue.

So another set of appointments, another uncomfortable procedure and they managed to stretch the colon from 9cm to 18cm But would it hold was the next anxiety, well for me at least!  The surgeon initially wanted to get to 20cm but he felt all would work again as the scar tissue would sort its self once the bowel was acting naturally again.

I was ready for the 29th January as the Theatre admission date. All tests had been done. A couple of days at outpatients for, blood tests, ECG, s etc. In fact I just got into the car and said ‘Hospital’ and it went under its own steam!! For nearly three years we had not been to many other places.

On the day before the operation the phone rang. Guess what? Operation cancelled; reason given lack of beds. I was annoyed and for the first time I felt that this was different. You see I wasn’t a cancer patient anymore, which is wonderful of course don’t get me wrong. All the treatment I had had over the last three years had gone like clockwork and always with a certain background of urgency. Now I was in the mainstream of surgical patients.

After many phone calls to and fro it was plain to see that they wanted to put me with another surgical team. I stuck out for the man who had brought me this far.  I gathered later that he was furious and personally set a new date for the op on the 26th Feb 2016. This was an odd day as it was my 75th birthday!!! But hey I’ve had 74 birthdays already and you know what; they are all very much the same. So led by the Anaesthetist, the entire theatre staff sang” Happy Birthday” as she applied the needle and off to sleep I went.

It is worth mentioning at this point that I had nearly cancelled my Colostomy bags in January, thinking I would not need them ever again! Although we are constantly advised to always have some spares, I certainly did not have a month’s supply. This time I only contacted the provider after the op. One never knows!

The stoma reversal has been a success as far as its main objective was concerned. This is a great relief to me and my surgeon, as blockages can occur.  I am now retraining my brain not to think every time I break wind I will need to run to the loo. But one has to err on the side of caution sometimes!  The bowel system will, I am reliably informed, start to settle into a pattern of normal behaviour but not immediately, and it can take up to six months.

The one thing I did not expect was an open wound where the stoma had been replaced into the abdominal cavity wall. When I say open it is of course covered in a dressing but a hole measuring 2cm deep by 3,65cm wide sits on my stomach.  It is now the one thing that is taking its time to heal. I have it repacked and dress every two days by the practice nurses, who tell me it is shrinking and they are pleased with its progress. They check the wound not just by looking at it but also by photography, which is a new tool in their medical bag.  What a selfie!!!!!

A nasty chest infection inflicted on me during my stay as an inpatient, thanks to everyone in the hospital wards coughing, has now gone. It definitely delayed my recovery and made the inpatient experience quite appalling. Still that was four weeks ago and all is good.

I see my surgeon in May and with luck and a following wind, excuse the pun!! I should be making my farewells to this part of the NHS hospital system. I still have a colorectal specialist nurse who I can call on anytime I have worries and she will organize my CT scan every year for the next four years.

I can truly say that all departments of the NHS have looked after me with care and consideration. It’s a marvellous organization, but on its knees now.  Who knows for how much longer can we proudly boast,” Free at the point of delivery from Cradle to Grave”

NB.( I caught Polio at aged nine in 1950, two years after the birth of the NHS. I was hospitalized for four years with a lot of spinal surgery being done. I know for certain no other generation will have the ongoing medical care that I have been lucky enough to count on over the past sixty years.)

 

Angela Wheelwright. Hayling Island, Hampshire.

March 2016

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

This contest is for everyone affected or touched by Inflammatory Bowel Disease, (Crohn’s Disease, Ulcerative Colitis and other types of IBD) to raise awareness and support the millions worldwide living with IBD.  Submit a photo of your ostomy, or scars, stoma or tummy, or even your favorite ostomy fashion. You can be creative too and send us pictures holding a sign or write a message on your tummy. Just nothing gross and no nudity please. You Don’t have to have IBD to participate. Submit your entry on Facebook or via Twitter or Instagram using the Hashtag “#ostomialert”. Contest runs MAY 19, 2015 – AUGUST 19, 2015.

Vote for your favorite photo

Even though this contest is really not about the prizes, we will be presenting an iPad Mini and an Ostom-i Alert sensor to the photo with the most votes. A year supply of Ostom-i Alert sensors for second place and an Ostom-i Alert for third place.