You have just had your stoma surgery, you look down at your new normal and think ‘right then this is the new me’. It may not sink it at first. If you are new to the ostomy community you may not have seen a stoma in real life which may take you back. For me I had been caring for my son who was 4 years old at the time with his stoma, so was well versed in stoma care. Yet I looked down at mine last summer and found it difficult to accept at first. I was told that this was a natural response as we are not used to seeing a major organ situated above the skin (you got that right!). You may be one of the lucky ones and take one look and be thrilled with it. Stoma surgery is major bowel surgery and if you were in immense pain beforehand, a sense of relief may come over you before anything else.
Learning to build your confidence
There is so much to get your head around which can affect your confidence in everyday life, which inevitably must go on. Practically taking care of the stoma. Learning to build into your daily routine a new way of toileting, and managing that according to where you are in the day and facilities you need access to. Your body may have gone through some changes due to medical treatment beforehand, and physically may have changed with the stoma an addition to the mix. New clothes may be in order or a new style or cut needed. Your diet will need to be bland and low in fibre as you find what you can tolerate and what you can not. Sounds a lot? It is. But all in good time as nothing can be perfected overnight.
We can all scroll through social media and see ostomates showing their stomas in gorgeous clothes appearing to be living their best lives. It can be easy to put pressure on yourself to get to that point or feel the need to very quickly. Personally, I felt the need greater than some as I have great experience in stoma care and assumed I would take to it like a duck to water. Everyone has a different rate of recovery, no one is the same. This can change according to your medical condition, previous surgeries and external factors at the time. It is good to have goals and have something to work towards, but the most important thing is to remember to take things at your own pace. If you push recovery too hard you may find yourself going back a step.
Products to make you feel confident
Learning to manage your ostomy and find products you feel confident in using won’t happen overnight either. Timesavers that are equally excellent in functionality may help such as the RESPOND 3 in 1 spray which is an adhesive remover spray, fresh linen fragrance and barrier film. Available in 150ml and 50ml you have the flexibility and the smaller option to take out with you. Having efficient supplies when leaving the house will ensure you are prepared for the worst and can get the job done quickly.
The Pelican ModaVi bag is another little gem that has given me great confidence in terms of the colours available. Wearing the black version teamed with its capability of folding in half secured by a velcro tab, means complete discretion and an appliance that doesn’t scream out ‘medical’ which so many do. It becomes part of your armour and teamed with complimentary underwear you wouldn’t know it was there.
Take control of your recovery
Following my surgery, I had a receding stoma which meant it didn’t matter what ostomy appliance I tried it wasn’t going to work effectively, and 5 weeks after initial surgery I had to have refashioning surgery to bring my stoma out further. Touchwood (as she touches her head) this did the trick. I carried out visual daily checks to monitor if anything was changing, and took photos to show my stoma nurse by monitoring any changes which may have needed intervention. This will empower you to take control over your recovery and know that if you do need to contact your stoma nurse you have photographic evidence of what is happening so intervention can happen more quickly.
Where your stoma is situated will be determined by whether your small intestine (an ileostomy typically formed on your right side) or large intestine (a colostomy which is typically formed on your left side). For me, having already had an ileostomy as a baby and it reversed by 2 years old meant they planned to do mine on the left to avoid scar tissue. When in surgery my anatomy had other ideas which meant they then had to go underneath my old stoma scar anyway. You never know what the surgeons will find so try not to be too fixed on the plan and prepare for changes if needed. Have some of your favourite loose-fitting clothes and pyjamas and buy some pretty high waisted underwear for post-surgery. It will give you a boost as you adjust to your new normal. I ordered a few new dresses that I could wear with leggings so I could be comfortable for the first few months as I carried on with mum duties. I also planned some nice catch-ups with friends as I knew seeing them would give me the confidence I needed.
Reduce anxiety when leaving your home
When ready to leave the house a Radar Key and Just Can’t Wait card reduced the anxiety of having to care for my stoma outside of the comfort of my own home. A Radar Key is free to those that qualify in some local authorities. It can be purchased online and your stoma nurse and/or ostomy supply company made be able to send you one. Ask your stoma nurse and going from there would be my advice. As for the Just Can’t Wait card, it is free and available in a digital format with Apple Wallet or GPay. You can still order a physical card if preferred.
Recognise how far you’ve come
Above all else, recognise how far you have come and give yourself a huge pat on the back. You have had major surgery, a new accessory and a new chance on life. Embrace new opportunities and don’t do anything until you are ready, in your own time and on your own terms. Your stoma journey will be just as beautiful as the next person, whatever direction it goes. There may be highs and lows to contend with as with all things in life. This just happens to be yours. My inbox is always open on @gutsy.mum over on Instagram.
Take care, Rach