Adventures with my stoma (part 2)

Some way along my journey the type of stoma bag I was given changed from a contained bag to one with a drain.  You have to fold a tab at the bottom of the bag several times and then it remains closed and is secured with velcro in three places.

You can drain the bag directly into the toilet without ungluing the bag from your body.   You get used to this, although it does take a bit of learning.   You are standing in front of the toilet bowl to empty the bag.

I find it better to put a couple of strips of toilet paper in the toilet bowl before opening the flap of the bag.   You are much less likely to be splashed with water if you do this, or splashed with the contents of the bag!   I learned this the hard way.

Before undoing the flap you should tear several strips of toilet paper off so they are ready to wipe the flap clean.  If you don’t you will turn around to the toilet holder to tear some paper off and contents of the bag will fly or drip all over the place!   I promise you they can as I have done this.

When you unglue the bag, never ever wander about the bathroom or anywhere else for that matter with the stoma uncovered.   You don’t feel when the bowel wants to empty – at least I don’t – and the contents can spray around the bathroom as if they are jet propelled!   And again I speak from personal experience.

I hope you never need a stoma, but for those who have or might these tips would be useful.  I wish someone had written them down for me.

A difficulty I found during the treatment for this type of cancer is the fact you need to soak your beam end following the daily radiation treatments.  I can get in a bath but have difficulty getting out and I was on my own in a hotel during the weekly treatments.  I found a piece of equipment like a bidet in a pharmacy in Cork city.  It fits on a regular toilet.  You can put warm water and saline into this and soak your beam end.   It was a great success so much so CUH radiotherapy unit are recommending it to their older customers like myself.   It only costs about €22.00 and is well worth the ease it gives.

It came into use again when I was ill and in hospital a couple of months ago.

Stoma bags are quite weighty but good old Ryanair allow me a 10  kg bag on board for free when I am travelling abroad.   You have to get in touch with them and explain your reasons for the request.  They send you an exemption form which you can show before you board.

I was worried about the disposal of the stoma bags when in Spain but they are to be treated exactly the same as nappies, so can go into the general household waste.

Swimming is not a problem as the stoma bags come with a separate little tag which you can stick to the bag so that it is completely sealed and airtight for the time you are in the water.

I have come a long way in the two years.  I didn’t know at the start how I would cope.  But I have.  I have even changed the bag in the constraints of the toilet on a flight.   If anyone reading this thinks I can help or give advice from my experiences, please do call me on 00353 (0) 87 287 4474.   Or email me at cazgilbert@gmail.com    I was so frightened and scared of how I would manage at the beginning.  Life goes on, but just a bit differently.

 

 

 

 

Adventures with my stoma (part 1)

When I was diagnosed with cancer of the anus, (and I have never had anal sex), I was told I would have a stoma.   I didn’t know what a stoma was.  I was too intimidated to ask.   The consultant flicked over the pages of his diary working out when he could fit me in for surgery which was to be the following week – in six days’ time.

As soon as I escaped his rooms with dates whirling around in my head, as I had to be booked in for pre-admission tests too, I went down in the lift to the coffee shop on the ground floor of the building.   It’s open to the four floors of the building and people were sitting around pleasantly conversing.   I wondered how many others had received similar news that morning.   I was on my own as the lady who had given me a lift had taken her thirteen-year old daughter to an appointment in another hospital further into the city,

Armed with a pot of tea I googled ‘stoma’ and was aware for the first time what I was really facing into.   The consultant had said, “It has to be done so we can effectively treat the tumor.”   Now I understood fully what he meant as if my bowel was functioning as it had for the past 73 years, the radiotherapy would not have a clear run to do its job.  It made common sense.

It was like 1984, I thought, where they listen to what is your greatest fear and then introduce it to you.  A stoma or a colostomy bag as I knew it,  had been the worst of my nightmares, apart from rats and mice that is.  I am terrified of both.

But my hardest moment of that day was texting or emailing the boys with my news.   I felt as if I had let them down.   They might be in their 50s and 40s but they were still my boys.

Two years down the road, life with a stoma bag is okay,   It can get grim, but all those books, and I was supplied with loads of them from CUH, do not seem to tell the nitty gritty story of this different life.

My first lesson was not to drink sparkling water.  I love elderflower in sparkling water.  One day, when I was in the middle of my radiotherapy, staying in Cork city during the week for my treatment, I drank a small bottle of it in M&S.  I caught the 108 bus to Bishopstown from the city, had my radiotherapy and walked over to Tesco to buy a yogurt and bits for my supper in the hotel.   I could have eaten for free in the hospital as they give you a voucher for free food in the hospital canteen if you are having treatment.  At that point I was eating very little although I knew the importance to my body of eating.  But I was so nauseous I couldn’t even keep a cup of tea down.

It was when I was in the checkout queue, patiently waiting whilst two ladies were having an animated conversation with the lady on the till, that I realized my stoma bag had blown up and burst.   I was wearing navy blue light trousers thank goodness.   I politely said, “I am in a bit of trouble here.  Could I please pay?”

They immediately parted to make an escape route for me.  Holding my errant stoma I paid for my purchases and shot to the in-store toilet.

Horrors – there was a man in the queue.   I explained, “I am a in a bit of trouble.”  He replied, “It’s okay missus.   I won’t be long.”   Bless him.  He wasn’t and as soon as the occupants, a young mum and her child exited the only public toilet in the store, he was in and out in a jiffy.

In the privacy of the toilet I examined the state I was in.   I was relieved and thankful that the Tesco toilet had plenty of hot water, soap and paper towels.   I hopped from foot to foot trying to take off my loose trousers without causing any more damage.  It was a bit of a nightmare but I managed to wash the soiled bits of my trousers and half-dry them under the hand dryer.   Emergency spare knickers were extracted from my handbag.  The expensive pure cotton ones I was wearing had been purchased following advice to only wear cotton or natural fibres when having treatment.   Their first airing had been eventful and there was nothing more I could do with them but wrap them in a plastic bag and place them in the bin in the toilet.

I got a taxi back to the hotel but was so worried in case I had missed something and was smelly, that I couldn’t converse with the driver.  They are used to taking people back to this particular hotel following their treatment so he assumed I had had a bad day. Well I had but not what he thought.

I took a lift to my floor and once in my room, ran the shower taps.  I took my shoes off and stepped into the shower fully clothed.  I let the warm water cascade over me and took off all my clothes.  Once I had showered and dried myself I washed everything I had been wearing in the bath and hung it around the bathroom to dry.

Tomorrow was another day and I would not drink sparkling water ever again unless I was sitting adjacent to a toilet.

 

Two years on

Just over twelve months ago I wrote the previous couple of blogs with the aim of getting a message over about being aware that piles may not be what they seem.  My “piles” were in fact cancer lumps.   However I came a cropper writing up this blog.  I started crying at the least thing.  I was in bits blubbing all the time.   I had the sense to get help and help I did get from the wonderful Cork Arc Cancer Support off the Glengarriff Road in Bantry.  I was pointed in their direction by one of the Palliative Care team who had looked after my late husband.

I had two sessions of counseling – could have had more – but this was enough to set me back on track again.  I was suffering from PTSD.  It was explained to me that as my diagnosis and surgery had taken place within six days and my chemo and radiotherapy within a couple of weeks of the surgery.  I had not had time to think or take it all on board.  Writing down what had happened to me had brought back all the horrors of what I had been through.  So in attempting to make everyone aware that piles might be cancer, I had made myself unwell.

I have never had or needed counseling in my life before.  I am so grateful to the counselor I saw for her time and advice.  She enabled me to understand what had happened to me and also to see people so much more clearly.  I have let go, sadly, of people who have let me down during and since my illness.   That has been tough but when life gets as hard as it has been I have had to prioritize myself.

My next blog will be called “Adventures with my Stoma!”   I am sure you can’t wait!!