Lene

Ileostomy since 1994

I was going to the toilet up to 28 times a day!

When I was 19 years old, I was diagnosed with colitis ulcerosa — chronic inflammation of the colon — which was causing stomach pain, intestinal bleeding, and diarrhoea. When I was 29, right after I had had my son, I suddenly found that I was having major difficulties. Some days, I was going to the toilet up to 28 times. I felt really weak, and I was finding it difficult to take care of my newborn son.

Things couldn’t carry on the way they were — I wanted to have a stoma

Things couldn’t carry on the way they were, and I was taken into hospital. After a week and a half in hospital, there had been no significant improvement in my illness, so I asked to see the chief physician. I couldn't stand being ill any more, and I decided to have a stoma. They operated the very next day, and I got my stoma. It was such a relief; I got rid of my stomach pains, and I no longer had to think about going to the toilet all the time.

'But you can't even tell you've got a bag on your stomach'.

A lot of people say: 'But you can't even tell you've got a bag on your stomach'. They must think that stoma pouches are the size of a shopping bag. But they're not — a stoma pouch is almost exactly the same size as the palm of your hand.

Remember to have extra stoma pouches in your handbag!

There are some practical things you need to remember when you’ve got a stoma: You should always carry extra stoma pouches in your handbag in case you have an 'incident'. I think most people who have a stoma have had an incident at some point. My stoma pouch fell off once while I was in the toilets at Heathrow Airport. Unfortunately, I hadn't brought any extra stoma pouches with me to the toilet like I normally do. For want of a better idea, I placed a sanitary towel over my stoma. That worked — but it still taught me that I should always carry extra stoma pouches in my handbag.

My son thought that all mums had stomas

My husband has been a great support and has never seen my stoma as a problem. At one point, my son thought that all mums had stomas on their stomachs! On the whole, I’ve been very open about having a stoma. When I tell people about it, they often ask questions and seem very interested. Whether or not you are open about it is your own business. I just feel that everything is much easier when people around me, e.g., colleagues, know that I have a stoma.

Listen to your body and do what your doctor tells you

If you’re in a lot of pain and are always thinking about where to find the nearest toilet, maybe it’s time you considered having a stoma. I've had a stoma for many years now, and I’ve no doubt it was the right thing to do. Life is much better since I had the operation and got a stoma. So listen to your body and do what your doctor tells you.