So it’s now 3 days before the day of my surgery. There’s a lot of things to get your head round and I’m still trying to adjust to all the changes that lie ahead with life with an ileostomy – as well as actually starting to eat again! There are a few helpful things that I have done in order to prepare myself as much as possible though, although not everyone would want to do everything on this list – I have just been obsessing about knowing as much as I can (I find it really interesting as well). I am by no means an expert, these are just a few things I’ve done to help me along:
- Doing as much research as possible before the surgery
This can be done in a variety of ways but I remember starting by simply looking at information online; the NHS website, online forums, ostomy books and ostomy supplies websites (just to name a few!). This is just to get to know the basics and there is lots of information out there that will tell you all you need to know – I’m still learning more and more, even after months of researching.
- Talking to a stoma nurse
Whilst I was waiting for a surgery date, mum and I went up to London to St Mark’s Hospital (which is a specialist bowel hospital and I’ve heard that they are amazing – so far, they have been!) to talk to a stoma nurse. She sat down with mum and I for about 2 hours, telling us everything we needed to know about life with an ileostomy and showing us some of the supplies/products that are used. She even gave me a little ‘goody bag’ with a couple of products, lots of information leaflets and a ‘training stoma’ – this is a rubber stoma with a sticky backing, which I could stick to my stomach and practise measuring and putting a bag on/taking it off/draining it with water inside. It’s also useful to help you get used to it mentally, as well as physically, as it’s quite a change to adapt to.
- Looking at ostomy supplies websites and signing up to their care programmes
Pretty much every website that supplies ostomy products has a whole load of information about life with an ostomy. A few key ones are: Coloplast, Convatec, Hollister, Salts Healthcare, Welland Medical, Bullen, Dansac, Respond and Trio Ostomy Care. These are all very different to each other (product wise) but they all have lots of helpful information about ostomies. I emailed as many companies as I could find, asking if they had any product catalogues or any introductory packs to try and get my head round all of the products they have – it’s crazy that there is such a variety of products available. Some of these websites have care programmes, which can provide personal recommendations to you, since everybody is different. Convatec’s Me+ programme can also supply you with a RADAR key (accessing locked disabled toilets all across the country) and a ‘No Waiting’ card to show someone for those emergencies where you need to access a toilet quickly. Coloplast’s Care programme is also very good – the staff are absolutely lovely.
- Finding support groups
The IA Support Group (Ileostomy and Internal Association) is a national support association, with local groups all across the country. There is a £15 yearly membership, benefitting you with an IA Journal four times a year (normally including information about new products and appliance equipment, about ostomy management, and many other matters involving life with an ileostomy), hospital and home visiting, advisory services and, of course, local meetings (with ostomy appliance manufacturers’ representatives and specialist nurses).
- Talking about it with others
By talking about it with others, I’ve found that the whole concept has become a lot less ‘alien’ to me now. As well as this, I’ve realised that having a stoma bag is not as uncommon as I thought. I have actually known quite a few people who live with one, or have lived with one in the past, and I never knew – which is comforting to know that it’s not going to be as noticeable or as bad as I thought.
- YouTube videos and online blogs
Type-in to Youtube anything to do with ostomies and lots of results will come up. Ranging from product reviews, recovery, dealing with everyday situations and going on holiday – I learnt a LOT from these as it really gave me an insight as to what life is like after surgery from their point of view. My personal favourites are Thalia Skye, Vegan Ostomy and Let’s Talk IBD. These people also have blogs of their own, as well as their YouTube vlogs. These are just a few of many others who have made videos which I’ve found incredibly helpful.
- Ordering samples and trying them on
What I have learnt by trying as many different bags as possible, is that not every bag sticks to your stomach as well as others. Also, your skin may react differently to various types of adhesives; for example, getting itchy skin underneath the adhesive or breaking out in a rash. Some companies (such as Salts Healthcare and Pelican Healthcare) add natural soothing things to the adhesives like Aloe Vera and Vitamin E). Again, I found that trying the bag on and getting used to emptying it (by filling it with water) can be helpful.
So I bought some drawers to keep all of my future ileostomy supplies, as I realised I needed to a convenient way in which to keep them! The kind of drawers is completely personal preference, but I did get some slightly large drawers (bigger than I thought they were going to be) as I had no idea how much space I’d need – I thought that it’s better to have too much space than too little space.
- Social media
And last of all (but by no means least of all), social media. By using Instagram and Facebook, I’ve been able to connect with so many amazing people with ostomies, who share their experiences online and are always more than happy to answer any questions. It’s basically like a community that I have found and am so excited to become a part of (the ‘ostomate’ community, that is). There are lots of users on instagram who share daily their struggles and achievements and it’s really made me see that you can do anything with an ostomy! You can go swimming, you can go travelling, you can go hiking and play sports – you can even go skydiving! I really owe a lot to these users as they’ve given me the confidence to share my story as well, and have helped to change my perspective of have a stoma bag. On Facebook, there are online groups where lots of people post questions and give encouragement all the time which, again, has been so helpful. I don’t use Twitter personally but I’m sure there’s lots of people who share their experiences on there as well!
So there are the things I have personally done to prepare as much as I can to what lies ahead. However, I do know that nothing can completely prepare me and that it will still be quite a shock. But by knowing as much as I can, I hope I’ll have the tools to cope with whatever this throws at me – and I know that there is a lot of support around as well.