I asked fellow ostomates for their top tips following ostomy surgery and they came up with some brilliant ideas! If you are facing stoma surgery and you scan this list, it might overwhelm you, and make it seem like you will have lots of problems and obstacles which will require solutions. Remember that these are simply suggestions different people have got for situations they have dealt with with their stoma. Some ideas may not be suitable for you, but some are great. Always check with your doctor or stoma nurse if you need medical advice.
Before the surgery
· If you have the opportunity ahead of time to see an ostomy nurse to ask questions and have them mark your site so you can spend a week with it and see how it sits on your abdomen and with clothes etc. Please note that for medical reasons you may not get to decide on the exact placement, with colostomies usually fitted on the left hand side of the abdomen. Stoma placement is an important thing to consider as if it’s placed in a belly fold or too close to the navel again one will have adhesive issues and leakage issues.
· Ask for different stoma bag samples to see if any react to your skin – this will give you more confidence when you actually have the stoma.
· Speak to your surgeon and discuss the length of your stoma. An ostomate advised “One does not want a flat or inverted stoma as output will find it's way beneath the appliance and damage the skin and also cause a big leakage issue so stoma length is quite important! Some surgeons think a longer stoma looks odd but this is not true. Mine is perhaps 1 to 2 inches when relaxed and this is an ideal length.”
· For patients in the USA, and American ostomate advises to “find out if your medical insurance pays for ostomy supplies. Do not feel overwhelmed with the many different ostomy supplies that are available from many companies as well as numerous medical suppliers. This means that you request ostomy SAMPLES from companies and then order them through medical suppliers who charge the medical insurance. Otherwise, ostomy supplies are also available thru Amazon and some local pharmacies.”
· A surprising tip came from another ostomate in America. “If you can afford it, and you need a new bed, I suggest getting one of those sleep number beds where the head of the bed comes up mechanically, I already had one in my home, and it was a lifesaver when it comes to getting in and out of bed right after surgery. But I have a transverse colostomy, so the stoma is like 4 in below my chest and 5 in above my belly button, so my ab muscles were greatly affected by the surgery, this might not be the case for people with an ostomy in the lower left hand/rectal region”
For the hospital
· Bring 2 sets of earplugs to the hospital (one lone plug will inevitably go missing) and a sleep mask. It’s NEVER quiet in the hospital for long!
· Extra long charging cable and facial wipes
· Straws to drink out of so you don’t have to lean over
· A sense of humour! Look up poo jokes!
After the surgery
· Take it slow don’t rush you learn by doing it yourself it works
· Pegs so that you can peg up your top when changing your bag – I tuck mine under my bra but this option is not available to everyone! See Hidden Stitches UK | Facebook
· Buy a litter picker to help you pick items up that you have dropped – this will help you keep your independence.
· Chew your food lots and lots!
· Have a small table or tray nearby so that you don’t need to lean over
· Cocyx pillow
· Body pillow so that you can sleep on one side, raising a leg up so that your stoma isn’t squashed. For example, a Kally sleep pillow.
· A raised up commode for more complex surgery
· Put a waterproof mattress protector on your bed
· You Tube videos can help you if you cannot remember how to change your appliance and your stoma nurse is not on hand to ask
· Hollister M9 drops which are put into a new stoma bag before it is put on, can help mask odours. Some ostomates also swear by putting a mint tic tac inside the bag too which is much cheaper!
· Your feet can get cold on hospital floors, so one ostomate got yoga socks so she didn't have to bend over to pick up her slippers when getting out of bed in the middle of the night.
· Particularly if you have an illeostomy, it is important that you stay hydrated. One ostomate recommended “a hydrate spark water bottle that lights up when I need to drink and sends notifications to my phone. I can also track my progress on an app.”
· If you are wheelchair bound, and are struggling to empty it without poo going down your legs, one piece of advice given is to buy a 3 cup stainless steel measuring cup. The lady commented that “This way I could do it sitting down because I can’t stand to do it. I’m so glad that I calmed down and figured out how to empty it without standing over the bowl or to sit on the toilet to empty it. This cup just gave me time to figure it all out.”
· Another tip is when you change the bag, to clean your skin around the stoma thoroughly – good skin care is vital as otherwise your skin can become very irritated and painful. There are skin adhesive remover sprays (eg 3M Cavilon spray)to help you take off the bag without ripping the skin, and skin barrier sprays to help protect the skin. Some of the newer stoma bags, such as the Dansac tre bags have a special substance in them which reacts directly with your skin to protect it, in which case barrier sprays are not advised. Check with the stoma bag supplier.
· Buy and attach a hand held bidet sprayer to your toilet to clean out your bag every time you empty.
· If your stoma overflows when changing, you can put puppy training pads on the floor so that the waste drips onto there instead.
· I put my bags into the main bin (in the small sealed disposable bag!), but you could buy a nappy bin and put that in your bathroom if you prefer.
· Have 2 changes of clothing in bathroom.
· Organise all your stoma supplies so that they are easy to find. Once you have a stoma bag routine you will find the best, most efficient way to organise your supplies.
· Pre-cut the wafers so you can change the appliance quickly/efficiently, if needed, i.e., out in public. If your stoma is regularly changing size just pre cut a few so that none are wasted if your stoma no longer fits.
· One ostomate who is continuing to have chemo, commented “that I was very weak when I came home from the hospital. My husband bought me a shower chair and it helped so much. Now, if I'm feeling bad due to chemo I'll use the shower chair.”
· Domestos to immediately get stains out of bedding. You can also take a small bottle of this with you when travelling.
· If you don’t like poo being left in your bag at all, one lady bought tongue depressors and scrapes/cleans her bags each time it is emptied.
Going out and about
· Don’t try a completely new food before going somewhere that you may struggle to find a toilet – in the car, or on the bus, or a long walk etc. You don’t know what reaction you will get and a bag leak might affect your confidence for going out again.
· Small bag to carry supplies in.
· Wetwipes and antibac for hands.
· Need to go card.
· In the UK, your GP can write you a letter for the airline so that you can take sprays (adhesive remover, barrier spray) into the hold.
· Travel certificate which you can show at the airport if you are searched. Available here for UK ostomates: Get your free ostomy travel kit from Coloplast.
· I hate the noise it makes sometimes, so I find that if I gently press on the stoma when I feel air about to come out, it can decrease the noise. I only do this if I’m in a situation where I want to avoid a loud noise, like a meeting.
I am sure other ostomates will have more ideas - if so, please do get in touch and I will add them to my list!
Remember if you look on my website I have specific guidance for swimming and cycling.