I got a whole day to get my head around the idea of having an ileostomy, many people don’t get even get that long, as it is often performed during emergency surgery. For some however, the surgery is scheduled and they have some time to prepare. Physically, this can be a blessing with more time to get ready for what is going to happen. Mentally, it can be both a blessing and a curse – longer to worry about the surgery, but at the same time you are able to prepare and speak to other ostomates about what happens, what to expect and what you need.
This post is written for those prepping for ostomy surgery. Whether you have a date or it is a possible part of your future. You also may have recently had your ostomy surgery. I have recently been talking with a lovely lady who is having her surgery soon and trying to offer over any pearls of wisdom I gleaned from my experience. Some people feel unable to talk to someone, or don’t know where to turn, so hopefully this will reach those who need it and get them better prepared for their surgery. I hope the list is helpful for you and if you have any extra tips, please add them to the comments so everyone can see them.
This is a must buy for me! Leaks are bound to happen and it will happen at least once in bed. Bad enough is having to strip your bed sheets at night, but if the output gets on your mattress, it is pretty much impossible to get out. I picked up a waterproof matress protector from Asda and it just comes off and gets washed with the sheets but saves your mattress from getting covered.
I also get bed pads from my delivery company Bullen. These are the disposable versions and although I no longer need to use them at home, they are super handy for taking with me when I am staying at a hotel or a friend/family members house. Your delivery company will do different complimentary items but you often get wet and dry wipes, disposable waste bags, scissors etc from them.
I know some are offered an epidural when having ostomy surgery. I can’t comment on it’s effectiveness as I didn’t have it, but a few ostomates I knew did advise me not to have one.
When I woke up from surgery in the recovery room I was in an immense amount of pain. The staff were brilliant and helped get it under control as quickly as possible and got my morphine PCA (patient-controlled analgesic) up and running so I was then in control of my pain relief. After this initial pain, I can honestly say it was never that bad again. I had my surgery on the Thursday afternoon and the PCA was taken away on the Monday, replaced by paracetamol and oramorph. I was a little worried when they said it was going but I didn’t have to be. The pain was well controlled and I didn’t suffer any horrible pain episodes during the rest of my recovery.
Everyone’s pain tolerance is different but the pain management team will be around to advise and help you manage it. It always pays to be honest with the staff and don’t sit suffering in silence, you get no medals for doing it without pain relief so take what you need!
A little tip for the ladies – New Look high waisted leggings were a lifesaver for me in the recovery period. I wore them a lot with short dresses and they were so comfy to pull up over my tummy, scar and bag. I didn’t feel restricted by them at all either.
I did have a huge wardrobe clear out not long after my surgery which I probably should have waited a little while for. Nearly two years on, I now find I can wear most things and probably didn’t need to get rid of quite so much, although it was an excuse to go shopping I suppose! During recovery you want to feel comfortable and you don’t want anything pressing too much on your bag. The biggest thing I have to be wary of when shopping now is my jeans – high waisted are great and go over my bag with ease (I have some fab ones from Pep & Co). I also wear jeggings a lot as they look like jeans but have a bit more stretch to them. I also tend to size up so my bag isn’t squasged under anything high waisted.
I had been a member of some IBD Facebook groups for a while but there are some fantastic ostomy-based ones and I thought I would mention a few.
PW Ostomy Support runs alongside the Purple Wings charity which is a brilliant place to get insight, support and information. The Purple Wings charity specialises in ‘Time For Me’ grants which helps support and treat ostomates. Their tagline is ‘Recover, Adapt and Overcome’ which really sums up life following ostomy surgery.
Making Ostomies Cool is a fab group with lots of ostomates all willing to share information, advice and support. It is more focused on just issues related to ostomies which means questions and posts are not left unanswered in a deluge of more personal posts. While I love some support groups for this sense of family and support, it is nice to have a group you can go to with a question and know it will be answered.
There is also the IA – the Ileostomy and Internal Pouch Association – which has some great resources for people getting an ileostomy or internal pouch. They have a large number of local based groups and if you choose to join as a member, you will be given details of your local one. Here in the Notts & Derby area we hold regular events including coffee mornings and meals out. The IA also has a great visiting service. You can request a visitor and this may be done in person or via email/telephone. You will be matched with someone of a similar age and with a similar experience so you should have plenty in common. There is also Colostomy UK and Urostomy Association if you are having a different type of ostomy surgery.
There are so many stoma companies out there all offering different products and it can seem like a minefield, but getting to try out different appliances will really help you find out what works best for you, your ostomy and your skin. There is, unfortunately, no ;one size fits all’ and although I wear the Salts Confidence BE bags and love them, they don’t and won’t suit everyone. However, definitely try them out! Ordering samples is really easy and, for the most part, can be done online. You can also call the companies and you will see how helpful they really can be. I will pop a few links below of companies you can have a look at, just click the name and it will take you to their sample ordering pages.
You can also find out more about the different stoma products on offer in my post – The A to Z of Stoma Products
The first time I saw my stoma I cried. Even though I was feeling pretty positive and ready for it, once I got the bag off for my first change, realisation seemed to hit me. When you first come back from surgery your stoma will be much larger due to the recent surgery you have had. Good news is, it does shrink!
There is also the question of whether to name your stoma. Many stoma nurses suggest you do this, but it is ultimately your choice. I would say most people I have come across have named their stoma but those who haven’t often say they don’t name it as they think it is or silly or they just see it as a part of them, rather than a separate thing. There is no right or wrong answer here and it is entirely up to you! Mine is called Stanley as I like things to start with the same letter and it had to be male (after just coming out of a relationship I was of the opinion all men were full of poo, so it seemed appropriate – I should mention that isn’t my regular view though!).
Your stoma nurse will be your best friend for the first week or two following surgery, and possibly after that too! They will be a daily visitor while you are in hospital and will help guide you through your first bag changes to make sure you are confident and competent before going home. They will also be able to advise on products to help you individually, such as the possible need for a convex bag if your stoma is more flush to the skin. I had three lovely stoma nurses working in the hospital I had my surgery in. All three were absolutely fantastic and I couldn’t have been more pleased with all the advice and support they gave me.
You will become obsessed over your output in the first few weeks – trying to get the perfect porridge like consistency they tell you to aim for! There are all sorts of tips and tricks to help thicken your ileostomy output (see my previous post – Thickening Stoma Output) and hydration is key as it is a lot easier to become severely dehydrated with an ileostomy especially, and this can happen very quickly (see my posts on Dehydration With An Ostomy and How To Cope With A Stomach Bug When You Have An Ileostomy).
I was really lucky as my ostomy ‘woke up’ really quickly following surgery, but this can take a few days. Some people are then given a post surgery low residue diet plan for six weeks and Louise over at Crohns Fighting did a great blog post covering this which you can read here
There are some foods which are not recommended after you have a stoma as they can increase the risk of blockages eg. sweetcorn, mushrooms and popcorn. However this varies from person to person and I can eat mushrooms and popcorn with little problems. Sweetcorn, nuts, fruit/veg skins and certain beans do not agree with me at all though! This chart gives a round up of some foods and what they can cause when eaten with a stoma.
It is advisable to avoid the stoma obstructing foods immediately after surgery but once you have healed you may want to start reintroducing them and see how you manage. Try them in small quantities, drink plenty and chew, chew, chew is always the best advice when trying new things. Note the colour changing foods too. Your bag may look full of blood but it is probably the beetroot you ate for lunch! Before rushing to A and E just have a think about what you ate that day, as it can scare you the first time it happens!
Not something you can buy, or save up unfortunately, but patience is going to be the key to get you through. Having a stoma is by no means a quick fix. It has given me and many others a new lease of life, but with that comes new routines and big changes to your everyday life. Finding products which work for you can take time, learning to cut your bags yourself will take time (it used to take me hours when I first started and I hated it), Recovery from the major surgery you have had takes time, as does getting used to getting up in the night to check/empty your bag. Learning what is comfortable to wear and what is ok to eat will take time and I mean months, as your body first has to recover from the surgery before you can start to really know this stuff. However, there is plenty of support out there and just know that, nearly two years on, I still have bad days where Stanley is then referred to ‘the little shitbag’ as he isn’t behaving.
This surgery changed my life and wholly for the better. Acceptance and understanding of your stoma takes a little time but as long as you are prepared for that, I think you will do amazing. I am not a medical professional and this post was written entirely based on my experiences, so please consult your doctors about your personal situation and about any problems you may have. My inbox is always open for advice and support though, should you need it.
Finally, a big thankyou and a huge good luck to Ella who inspired this post. She has her ostomy surgery and has been in touch with me asking questions and seeking support about it all. It made me write this post, to collate a lot of the things we had talked about in our chats and hopefully help people facing, or who have just had, similar surgeries. Please add any relevant tips you can think of in the comments, it will be great for people to be able to read lots of ideas from the amazing, supportive, ostomate community.