Stories

I am lucky that my husband has been amazing and really doesn’t care about my stoma, but I heard about others not so lucky, and we are talking about husbands and wives who have been with their partners a long time.

The name of my stoma is Mairead. Yes I know it’s a girl’s name but here is the story behind the name of my stoma!

Waking at 5am with a bad leak two days after surgery isn’t much fun, you can’t leap out of bed as quickly. Oh well, onwards and upwards.

I am however fortunate to have some support from family and friends who carried me through the black days, it must be truly awful for those who don’t have that support because my experience of accessing any form of help for this type of condition, virtually non existent.

At first, I would only wear baggy clothes, which is very different from what I would wear pre-surgery. I was very concerned that people would be able to see my ostomy through my clothes (but they cannot!).

I always find that talking about what is on your mind is so much better than keeping it bottled up, and doctors don’t always know everything about living with a stoma so sometimes you need to ask those who live that life.

My diet has probably been the hardest thing to adjust to since my ostomy surgery. I was recommended to eat about 1900 calories a day with 70-80 grams of protein daily. Eating that much is a lot for me but I’m trying!

I bought a small cheapish chest of drawers. This enables me to keep the bags in one drawer, the sprays and wipes in another and also one for all my medications.

As for me …. I call mine “The Spitter” – because it always plays up when I have the bag off …

Yes there are always difficult days but that is true for most people, yes the stoma might cause issues, but if you know others to share your concerns, the problems become smaller and you feel that you can overcome them.

It’s not realistic to have these ridiculously high out of pocket expenses. It’s just not manageable and extremely stressful. Please always be an advocate for yourself and fight for what you need.

Aneica Duffy After a few weeks I had no problem telling the staff at endo about my condition and that I had surgery and Ulcerative Colitis (which has now been upgraded).

I’ve had about 30 operations and procedures since 1985 when I first became ill. I’ve always bounced back. I remember when I had my ileostomy in the late 80s, within a few weeks I was being dragged up some mountain by my husband!

I have come to realise a new respect for others who have difficult stomas and the troubles that it brings, I am no longer in the mindset that everyone has the same stoma journey and that not all stomas are equal, just like humans, we all are different.

I’ve used both one and two piece, and although I like them both, I now just stick to one piece, mainly for confidence more than anything else.

One things for sure, as an ostomate who thought I was an old hand at this stoma stuff, I have come back down to earth with a bump…we need to listen to our bodies more and not ignore signs that something isn’t quite right

My life is so different because of everything I went through and it showed me who I really am and what I’m capable of. I stayed positive through all of this, and I came out of it feeling like a warrior.

These are just a few ways that I’ve dealt with the changing times in the dating world. The most important lesson is still… HAVE FUN!!! Dating is supposed to be fun! Getting to know new people, falling in love and all that jazz.

Life has changed for us but I too am changing and trying to embrace my ‘new normal‘. My second grandchild is due shortly, I will not let this win. Life is just too precious.

Everyone is different even if we all have the same organ gone. Experimenting with different foods will help you find what you like and what you can tolerate.

Some people stared at me on the beach when I had my bag/ Tomas cover out. I am quite a strong person so it didn’t really bother me that much.

When I say they are funny, they weren’t at the time, but looking back, I still giggle just thinking about them ….

We say that our lives won’t change, and we’ll be able to do the exact same things as we could before. While that’s a very important goal to strive for, we must also remember to take it easy on ourselves.

Although the creation of a stoma via an operation sounds a medical miracle, it has in fact been around for a lot longer than you will appreciate…..

I got called and was told to take the pillow off the bed and off we went down the corridor, this was quite nerve wracking, but the nurses tried small talk and the odd joke.