I'm New - Stoma Advice or Help needed xx

Hi MissToniNicole and welcome to our group, and welcome to your mum too.

I’m really sorry to read how difficult things are for your mum, but let’s see if we can help with some advice and support for you both. If you can give us a little more information it will make it easier for us to help, because there are definitely things which can improve the current situation.

First off, can you tell us which type of stoma your mum has, and how long since it was formed? It sounds like it might be an ileostomy rather than a colostomy from what you’ve said, but best for us to be sure. Output from an ileostomy does tend to be more frequent than a colostomy-I have a permanent colostomy and from what I read, this can be easier to manage.

If the stoma is newly formed, it can take time for the body to heal and for things to settle and the stoma to assume its final shape etc-I know I had a lot of issues when my stomas were first formed, with leakage and bursts which are so disheartening.

It would be good to know what type of bag your mum is using as she may find it is not the best one for her particular situation-is it a bag which is drainable and needs emptying rather than a closed bag which needs replacing if there is a leak and is not designed to be drained? 

I understand that your mum feels she might be making a fuss calling the nurse, but really that’s what they are there for-to give advice and find the right type of bag. If she does not want to phone, could you call the nurse and see if they can help, and maybe even make a home visit? I had a really excellent nurse when I first had my surgery and she was a mine of information and suggestions, trying different products until I found the ones which were right for me. 

My colostomy was formed pretty close to my belly button, and I have the added joy of a urostomy on the other side of my belly button as I’ve also had my bladder removed, but I have found bags for both (after trying many different types) which suit both and adhere well. You can get additional products to give extra adhesion, and extra strips which you can seal around the bags on the outside-for me, these were available as part of my stoma supplies prescription and literally were a game changer in terms of giving me the confidence that I wouldn’t have leaks. Any leak would be very rare for me now-I do sometimes have the odd explosion, even now after 4.5 years, but I have more confidence nowadays.

Companies which manufacture stoma supplies are happy to provide free samples for your mum to try, and the nurse will be happy to suggest which different products might be suitable. I can see you are keen to help, so perhaps you could make an order online on behalf of your mum if the nurse can suggest different types of bags? Over the years I have done this multiple times and tried multiple products until I settled on what suited me. 

I find things like marshmallows don’t really work for me, or jelly babies but everyone is different and I have got to know over time what is likely to cause me to have an increased output and risk an issue-I avoid things like milky coffees for example, though I love them! 

On a practical note, a waterproof mattress cover is a godsend, as are puppy pads! I am currently on holiday in a hotel with beautiful white bedding, but my puppy pads are with me, just in case! It’s all about having an extra little bit of a confidence boost. At home, directly lying on puppy pads will save the sheets from multiple changes and are cheap to buy. I used to use those pads designed for toilet training toddlers, but they are expensive and puppy pads do the job just as well. 

I’m sure you will get responses from others in the group, and you are among friends who completely understand and will be happy to help you both. I've waffled on long enough but always happy to chat with you-please say hello to your mum from me, and let her know that things can get better. The nurse would be my first port of call, and your mum does clearly need some advice. It will be much better for her to get this and try something different rather than suffer in the way she has been doing. It can be better! Big hugs to you both.

Sarah xx

Hello MissToniNicole,

SarahH21 has said it all at the moment and if you can provide those details your Mum's problems will be overcome. I also have two stomas (a loop ileostomy and a colostomy) and they work well. There are quite a few possible solutions out there but - as SarahH21 says - the stoma nurse is really the best person to speak to. The stoma nurse will be the key to try different products and I have found that the nurse's recommendations are highly regarded by patients and GPs alike (essential for prescription approval). Your Mum has entered the mysterious world of stoma management, where lay people are unaware of the subject and only members of this special club have their own stories to tell, based upon their personal experiences.

No doubt it will take a little while but a solution will be found and confidence restored.

Dulac

Ditto everything that has already been said. Try to think of calling the stoma nurse as getting training instead of "making a fuss". Those of us with stomas live full lives and leave the house whenever we want. We can do this because we learned to care for the stomas and built our confidence. 

Being new to this stoma lifestyle myself (surgery was 4 months ago), I remember being new and all the struggles I had. I remember multiple accident days. It was miserable. A stoma nurse helped me sort it and now I am able to go out and do things. You and your mother deserve the help.