Kath’s story: living with a stoma and building confidence.

The words 'Kath's story: Living with a stoma' written in green next to a picture of a lady standing next to some flowers smiling.

You may have read Kath’s recent blog ‘Living with bowel cancer and a stoma’, where she shares some of the physical and emotional challenges that she has faced.

In this blog Kath is talking about how living with a stoma has affected her self- confidence. Living with a stoma can be a big change for some people and these changes can take some time adjust to. 

By sharing her experiences, Kath hopes to help others and to let you know there are ways to build your confidence and adapt your life.  Although there have been some difficult moments, Kath wants to make people aware that you can still lead an active and fulfilling life when living with a stoma.

I've been a stoma user since 2011 and hardly think about it - ten years down the line. Going back ten years things were very different. For me, gaining confidence was a gradual thing. At first I didn't want to leave the house in case the stoma leaked whilst out. I was also in some pain and the excoriation at the stoma sight was very sore and bled a fair amount most of the time during the early days.

“For me, gaining confidence was a gradual thing. At first I didn't want to leave the house in case the stoma leaked whilst out.”

I remember having to take spare stoma apparel with me whenever going out which was a nuisance. It did become routine/second nature quite quickly though. My Stoma product company Securicare was and remains the best company I have ever dealt with. They were compassionate, caring and professional. The same I would say of my Stoma Nurse.

I learned baby oil and a scented oil squirted into the bag before use really helpful. If you are an optimist, you might find the bag can produce a bit of a pong. I have always had huge support from the above, my family, friends and the company I worked for.

“I learned baby oil and a scented oil squirted into the bag before use really helpful. If you are an optimist, you might find the bag can produce a bit of a pong.”

The left side of the picture is 2 people in the sun smiling. The right side is a group of people sitting at table.

There were changes to my diet with a colostomy. Most curries apart from the mildest, are a no-no. Chocolate and green vegetables are the same. Root vegetables are all fine. As far as fruit is concerned, I can only eat bananas and stewed apples without a bad reaction. If I cheat my Stoma is overactive and then keeping hydrated can be a problem (because of the impact on my kidneys).

In the early days nuts and baked beans made the stoma overactive. Curiously over the last few years both of the above have not caused me problems. Some fruit and veg can cause other problems for me if they're fibrous. These include celery, rhubarb and any foods that have skins like apples, mushrooms and celery. I found if I 'cheated' and ate the no-no’s before 1pm there wouldn't be repercussions. 

“I was advised to eat little and often rather than three large meals a day as my system managed food better this way.”

Fish, meat, pasta , rice, some cheeses, eggs and yoghurt were all good. I also drink Yakult as it aids smooth transition of foods through my system. Gradually I ventured further afield, used clothing shops changing rooms and went swimming. To this day I wear a costume with a small sarong around my waist to disguise the slight bump of the stoma. 

I wear most styles of clothing and never felt/feel a frump. I didn't want to be defined as 'poor Kath'. 

For me the ileostomy, (second op), the first was a colostomy, was trickier to deal with as I would have more leaks (with ileostomies the output is greater) and mine was classed as -'high output'- this meant the stoma bag was large and bulkier.

Two pictures of a lady doing different water sports.

I carried a card saying I was a stoma user and given a radar key so that I could use disabled toilets.  Changing a stoma bag in a usual toilet can be tricky and you need to be inventive in a small space- but it can be done.

“I carried a card saying I was a stoma user and given a radar key so that I could use disabled toilets.”

A difficulty I had and still have is having CKD - chronic kidney disease. This meant I needed to drink the same amount of liquid as that of my output. This meant drinking two to three litres of fluid a day. If I became dehydrated, I would start to go into kidney failure which meant another stay in hospital to get quickly hydrated. 

Everything was trial and error as everyone responds differently to all manner of things. Loperamide (Imodium) helped/helps tremendously. I had to have eight tablets a day, half an hour before each meal to help thicken the output.  

“Everything was trial and error as everyone responds differently to all manner of things.”

At first, I wondered how I'd cope but once I learned the cancer hadn't spread, it gave me the strength of mind to deal with the challenges head on. If I had a mishap, I turned it into a joke which, for me, lowered the stress level and helped me deal with the issue at hand. This combined with ‘gallows humour’ was my coping mechanism.

I found confidence came with time.

Here on the Online Community we understand how valuable peer support can be. Why not offer some support to Kath in the comment box below. You can also start a discussion in the Ileostomy, Colostomy and Stoma support forum and tag ‘@KathH2’ in the discussion.

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