Balancing work, family and life with a stoma | by Rachel

With the demands of family life ever growing, here I share my top tips to help navigate life with a chronic illness to balance work, family life and stoma care. 

Storage of medical supplies

Being able to find things quickly and having a good storage system in place is paramount for the family home to work efficiently. I have been in both situations where I can be on it with this, and where it has escaped me and I have had to claw it back. When I went from one to two children with a stoma, our deliveries doubled overnight, and with medicines and baby supplies I lost my way for a little while. Making proper space for this, labelling, good stock rotation, and letting your support network know where supplies are in case of emergencies really helped. 

Having ready to go storage boxes of stoma bag changes upstairs and downstairs was essential in the baby stages. Babies can’t tell you when the dreaded itch starts if a leak is on the horizon, and can cry for so many different reasons. Due to this, I found when you see the stoma bag needs changing, you don’t have a lot of time to react, so having the supplies to hand and not having to carry the baby around the house saves time and discomfort, and your carpets! It goes without saying that a kit in the car, and when you leave the house is a must too.

Informing your place of work

Holding down a job with an illness or children with an illness can be incredibly stressful. Individuals can feel worried and anxious about letting their place of work know. Knowing what to say and how to explain it, and that they may not understand. Be prepared with what you are comfortable to share, and what you need in place to do your job efficiently. Laws are in place to protect you, and you should not be discriminated because of your illness. I have always made a point of being open from the start of a new place of employment. Very early on in an office role I had gastroenteritis come on out of no where during a work day. My bag leaked a huge amount of output, and leaked over my lap in the office chair. I was lucky enough to work very close to home and informed a colleague straight away and went home to shower and get changed. Yes it was an awful experience, but if you are poorly, or an accident happens remember it is out of your control. It can be embarrassing, but that feeling will wash over you and you will not be the last person that has an accident in work whether you have a stoma or not.

Making time for yourself

As the old saying goes, you can not pour from an empty cup. Having a chronic illness yourself, or a child with one, it impacts both your mental and physical health. In turn, this can make the demands of family life even more taxing. Childcare can be one of the biggest barriers where parents/carers are concerned, for you to be able to take a break whether it be for a few hours or a day or two. Your medical institution should be able to direct you to any support in your community, or a charity that could provide respite. If this is not possible, planning little things to look forward to after the bedtime routine can provide some escapism at the very least. Whether it be a TV series, movie, lego set, gaming, or having a games night and a glass of wine or a cuppa, try and make time for you. 

Keep going

It is never going to be plane sailing, and you will have hard days and good days. It is to be expected with a chronic illness. But what I have found with my fellow warriors, is that we are made of tough stuff, and we can battle through anything. You’ve got this!

Rach
@gutsy.mum

Stoma care during a hospital admission | by Rachel

Needing to go to hospital with a stoma can be a very daunting experience, especially if you haven’t had to go post-surgery. Whether it is stoma related or not, we need to think about more things than a patient without a stoma. Here are a few things I use and have learnt in recently months:

Being prepared

We all know how important it is to have stoma care kits for different scenarios such as in the car, in your bag, and in your home, but do you have one ready to go for an emergency hospital trip? In all fairness, the one you have in your car or a spare for other uses will suffice in an emergency, but if you or the person you care for is prone to needing medical intervention, it wouldn’t hurt to have a bag ready. Make sure with your extra bags of supplies that you do stock rotation just as you would when you get a delivery. In the warmer months especially when kept in the car, the integrity of the products can change above certain temperatures. Make sure to check the labels. You may have your bases cut already, however you may find if you have a gastro bug that your stoma shrinks in size. For this reason, be sure to have some that are not cut as well.

Nappy hack

Yes you are reading that correctly, a nappy hack! When I had become poorly with little notice and my output rocketed on the school run a few months back, I could feel my stoma bag become itchy and I knew the pressure underneath my jeans with the sudden huge volume had caused a leak. Being in the car driving I couldn’t do anything about it apart from grab a nappy and think to wrap it open, around my waist covering the bag as much as possible. This acted as the perfect plaster to absorb the leaking until I could get home and sorted. Of course if you don’t have a baby, you won’t have nappies spare in the car, but if you know someone that does it’s definitely worth asking to use in case of emergencies. If you are going to the hospital in the car whether you have to drive yourself or have a lift, this hack can save a lot of mess.

Admission

If you are admitted, be sure to let hospital staff know you have a stoma, which type it is, and if you need supplies. Triage staff need to know you are at high risk of dehydration if high output is the problem. Be warned that stoma nurses do not typically work outside standard working hours of 9-5. You may struggle outside of this if you need to see one. Some wards have keys to stoma supplies which could be locked outside of the stoma nurses working hours should you need them. You may be lucky and have nurses on shift that are familiar with stomas, and find some supplies elsewhere. Failing that, ask a loved one to bring some to you. If hospital staff are able to get supplies for you, don’t expect for them to have the exact ones you use. Make sure to tell them if you use convex or non convex, and soft or hard. You may have some staff not too experienced with stoma care, and it might take some explaining so be patient with them, and they will help you the best they can.

High output hack

If you have very high output, your normal stoma bag may not have the capacity to allow for this. You may need to change the size completely due to the volumes per output, and you may find with an ileostomy, if the consistency is water, it is causing leaks that you wouldn’t necessarily have. Changing your stoma bag to one with a tap on the end is worth its weight in gold. Typically these bags are used for urostomy patients. Nursing staff can provide you with a catheter bag to attach to the end, meaning the output can drain away without putting pressure on the base of your stoma bag which could cause leaks. During a recent hospital stay for my eldest who was losing litres of output a day, this hack changed him from having three bag leaks the first night, to none the rest of the stay. The collecting of stool in the catheter bag will also help nursing staff empty and monitor the output easier if they are doing a fluid balance. It also makes for a much messier job of emptying.

Finally, be your own advocate

Being in hospital is awful enough, but when you have a stoma to contend with, it can feel very difficult to stay positive and not get down about it. High output, especially when it is at its worst, can feel relentless and never ending. Medical staff are there to help you, and if you feel you are not being heard or the treatment plan is not working, make sure to speak up for yourself and be your own advocate. If this is difficult for you, have family or friends support you when you talk and write it down so you are prepared with what you want to say.

Rach
@gutsy.mum

Coping strategies for new ostomates | by Rachel

You have woken up post-surgery to a new addition surgically attached to your stomach, probably covered by a pouch that is clear so everything is on view. Your head and your heart now need to start the epic journey of getting to grips with everything, and getting to a place where you feel ok. Your stoma nurse is your key person to get support and information from, and there is a wealth of information online. Here are some tips to get you started:

Educate yourself

Learn about the different types of stoma pouches. Whether you have a 1-piece recommended, a 2-piece, a convex base, or a flat base, understanding the different types and what is best for you is important. Your body can change over time, and as a result, the type of stoma pouch you need may change. For example, when pregnant I found I needed to change from a flat base to a convex base as the shape of my stomach changed, and how the pouch sat as a result. Where you live, and what is available to you can vary greatly. Some people may regularly see a stoma nurse, whereas others may only see one if they actively reach out. It is important to keep an eye on any changes and when something doesn’t feel right, get advice and help straight away. Nothing is too small or too little to ask. Learning things to look out for is very important. Your stoma nurse will inform you of these before you are discharged. 

Talk about it

Learning to feel somewhat comfortable with talking about your experience will help you process what has happened. Find your trusted circle and confide in them when things get too heavy to carry. Take the help when offered, something we all need to do more. If you have the financial means to do so, counselling could be an avenue to look into if you are struggling to get to terms with things. Some employers may offer counselling as part of your job package. When I worked for the local council in an education setting, this was something I had no idea was offered. The charity Mind can also provide sessions if you qualify. There are options out there if you get researching. There may be a stoma support group local to you. This could be found on Facebook, in the back of stoma companies/charities magazines, and on their websites. 

Give it time and be kind to yourself

You don’t typically see someone having had stoma surgery, skipping out the door, and cracking on with life the way they did. At around 6 weeks, it is expected that most can return to some form of exercise (slow and steady) – sometimes sooner. We are all different, and our bodies will vary in their condition going into the surgery. Healing isn’t linear, and you may find some hurdles such as finding the right stoma pouch for you, and your skin around your stoma (known as the peristomal skin) getting used to having contact with the pouch and stool. Don’t compare your own healing with someone else’s. You will get there in your own time when it is right for you. 

Plan things to look forward to that can be done at home until you have the confidence and venture far. A family games night, movie night or book club. Paint and sip evenings can be done at home and will also save you some coins! We do art club evenings and buy a plain canvas set, get some yummy snacks out, and chill as a family. Do something that makes your heart happy. 

Keep a diary

Post-surgery, my first time leaving the house was to a coffee shop with a friend. I put my positive pants on that day, ordered a large latte and it felt like pure escapism catching up and doing something ‘normal’. The visit ended with my pouch leaking and needing to go home and change my clothes and shower. It was my first experience of a pouch leak and it wasn’t pretty. I was not prepared. I didn’t have spare clothes with me. Partly my fault for needing to go home, but also I hadn’t quite found the right pouch for me. It also turned out that caffeine was not my friend either and I had to cut it right down.

Some can tolerate caffeine all day and eat whatever they want. Others simply cannot. This is where a diary comes in. I wish I had recorded what I was having orally from when I got home from surgery, to track when leaks were happening. This would have made the process of elimination much quicker. When you contact your stoma nurse with teething problems early on, they will ask you about what has been happening in your day to day life. If you had a record to hand, it is much easier to reel that off. I had always done it with my son and his stoma care, but neglected to do it for myself. It is a form of self-care and looking out for yourself. Just a quick note on your device is all it takes.

Rach
@gutsy.mum