Navigating Parenthood with a Stoma

Alannah, UK | @glitteryguts x

Becoming an ostomate is a tough journey at the start. We often forget the journey started before having stoma surgery on what got you to the point of having to need a stoma. For some, it can be a chronic condition. For others, it could be cancer, and for some, it can be a less known rare condition. There are many reasons someone has their stoma. However, all ostomates go through a very similar recovery after surgery and feel similar feelings towards the future. Often, women ostomates are led to believe that having children is near impossible or not possible at all. It comes down to what your body has gone through and its current health status and your overall health as an individual, but it is possible for the majority! For me, I had my stoma before having children, so that’s all my boys have ever known and all I have ever known before becoming a parent. I went through all the hard times, recovery, surgeries, etc, before they were born, so I had that time to really rest and recover and only think about me. Many parents have already become a parent before their stoma surgery, and it is tough to know how to navigate life with such a big change, not only as the parent but the whole family. Firstly, I want to tell you that things are going to be OK. Yes, there are going to be challenges, hurdles, grief and stress of finding your new routine but once you recover and find a routine that works for you and your family, you will wonder what all the stress was about! Whether your surgery is planned or an emergency, it’s good to have the majority of your hospital bag packed. You’ll thank yourself for doing this early as packing last minute can lead to forgetting things! You’ll know this already from packing your hospital bags when you were expecting your baby or if your partner was pregnant. I’m sure you will have discussed and planned who will help with childcare, and again, packing your child’s bags can also be helpful earlier on so you don’t forget anything. You can expect to be in hospital for a week, but it will take twelve weeks to heal, so make sure you have lots of help!

Here’s some tips I can share to help you navigate parenthood as an ostomate;

Like your usual skincare routine, find what time and day works best for changing your bag. For me, I like to do this after I have showered (when I can catch one!)
Avoid eating anything fibrous, with skins or seeds for at least twelve weeks after stoma surgery.
Hydrate well. You can drink electrolyte drinks, or you can get the tablets that dissolve in water.
Make sure you have a pain plan for at home as well as anti-sickness medications in case you have a rough day.
Have plenty of help with your child and housework. This is in connection to my tip above as medications can make you feel a bit out of sorts and unable to drive.
Don’t lift anything heavier than a kettle filled to the very bottom line of water. We don’t realise how much we use our stomach muscles for even the little things!
Be open and honest with your child about your stoma, and if it’s planned, read the leaflet your stoma nurse gave you together. Make it fun! Perhaps they can choose a name for your stoma.
Bag covers are really fun and also help your child learn about it! There’s so many covers out there like Disney, etc.
Remind yourself often that nothing you have done has made this happen to you or your family. Mum guilt can be really hard and, for dad’s, too. It isn’t your fault, and having the surgery enables you to be there long-term.
You can get the buttony bear stoma story book, which is a children’s book all about stomas! Parents can also sponsor “A Bear Named Bu ttony” to help their children learn about stomas.
Ordering lots of different samples of bags to see which is the most kind to your skin, comfortable, and make you feel confident. This way, you’ve tried and trialled lots of different options and found what works best for you.
Good skin leads to bags lasting longer and less chance of leaks! Don’t use anything other than dry wipes in water to clean your skin. Stay away from any wipes! They can leave oils on your skin, which cause too much moisture problems, rashes, adhesives won’t stick as they should, sore skin, and leaks. Believe me, I learnt this the hard way.
Don’t bottle up your feelings and thoughts. Talk to someone. It could be anyone or even another ostomate. It’s tough already being a parent, and when away from your children or at home, in pain and feeling rough, it’s easy to get caught up on what you can’t do short term, which leaves you feeling like you’re missing out on time with them and trying to put on a front that you’re OK. Your mental health matters just as much as your physical.

It takes time to find your new normal, but once you do, everything will fall into place. Remember that your family loves you and to please be kind to yourself during recovery. Appreciate the little things!

Alannah