Living with VACTERL Association

VACTERL is unique, and your reason for having a colostomy may be different from many others. However, you are not alone, that’s why we created this page. It brings together shared experiences written in the first person to preserve anonymity while offering real insight and support.

Adjusting to life with a stoma can feel very different from what you may have been used to when passing stool through your rectum.
When I think about VACTERL in general, I don’t see it as something that can always be fixed or cured.
Instead, it’s about finding ways to manage it so that you can live your life as comfortably and confidently as possible.

Introduction:

Management looks different for everyone, even for people who share the same VACTERL letters or similar symptoms. What works well for one person may not work the same way for another, and that’s completely okay.
The advice in this article includes some of the general guidance I’ve been given, along with things I’ve learned from my own experience.
I’m also aware that some people may have additional considerations, such as limb differences, which can affect how they change or manage their stoma care. My hope is that these tips help you find what works best for you.
 
Finding the Right Stoma Supplies:
One thing I wasn’t fully aware of before surgery was just how quickly and dramatically my stoma size would change.
From immediately post-op to now, it looks completely unrecognisable in both
size and shape.
This might not be the case for everyone, but it certainly was for me.

I started my journey using round, flat bags. This is quite common, your body has just been through major surgery, and your stomach is often flatter at that stage. As I began moving around more at home and eating normally again, my needs changed. I was then given concave bags. These were helpful for a while as they prevented my stoma from prolapsing and were comfortable for me to apply, especially as I have low finger dexterity.

Now, two years later, I’ve tried a range of different options, convex bags, bags lined with algae (which were really kind to my skin), and bags made with manuka honey.

Over time, I’ve learned that your body will tell you what works best for you and your skin. It’s important to remember that this is a journey. Don’t expect to get it right straight away. Your stoma size and shape can continue to change, so regular reviews with a stoma nurse are essential. I personally have an appointment every three months, just to check that everything is still working well.

There are also two main types of bags: one-piece and two-piece systems. I’ve found one-piece bags work better for me because of my limited finger dexterity. However, two-piece systems can make changes easier, as you don’t always need to remove the entire bag, just the pouch itself.

Skin Care Around the Stoma:
As mentioned in the previous section, the bag you choose can have a big impact on your skin. You might find you love products like manuka honey-based seals, or you may have a favourite adhesive spray or wipe that works well for you.
One important thing I was told is not to use regular wet wipes on the skin around your stoma. They can leave residue, which prevents the bag from sticking properly and may lead to irritation or rashes.

If your bag leaks, change it as soon as possible. The skin on your stomach is not designed to have poo sitting on it, and this can quickly cause soreness.

If you notice a little bleeding around your stoma, this can be normal. After washing and fully drying the area, you can apply a small amount of stoma powder to any broken skin. A helpful tip I learned for drying the area is to use kitchen towel, it’s very absorbent and works well. Put a small amount of powder onto the corner of the kitchen towel or a dry wipe and apply it only where there are skin breakages.
Be careful not to use too much powder, as this can contribute to skin overgrowth and granulomas. Granulomas are common and usually not alarming. I often find that having them treated with silver nitrate by my stoma nurse helps to keep them small. I don’t use powder often, but I still get granulomas -  there isn’t always a clear cause.
If granulomas become too large, a surgeon can remove them using local anaesthetic. If they grow back or begin affecting how your bag fits, let your stoma nurse know. Large granulomas can sometimes change the shape of the area and prevent the bag from sticking properly.

Changing Your Stoma Bag:
Establishing a regular routine for changing your stoma bag can make a huge difference. It helps reduce anxiety and gives you a sense of control. Many people prefer to change their bag in the morning. Personally, I prefer doing mine at night. I live a very active lifestyle, and if I’m going to have a leak because of an ill-fitting bag, I would rather it happen overnight than when I’m out and about.

Always carry supplies with you. Your stoma nurse will usually provide a complimentary travel bag. My advice is to use it!

Pack spare clothes just like you might have done before surgery. I’m sorry to say it, but you’ll always need spares. It’s far better to be safe than sorry.

If you notice a leak or any unusual smell, change your bag straight away. Acting quickly helps prevent pancaking and protects your skin from becoming sore.

Finally don’t be afraid to advocate for yourself in public. If you urgently need the toilet, it’s okay to say so. I’ve been open about having a stoma when necessary, and I’ve often been met with understanding and respect. Particularly in situations where accessible toilets are questioned, being confident about your needs can make a real difference. Especially when coffee shops don’t want you to use accessible loos, that’s a bonus.

You may not be able to show them your butt but you can show them your stoma bag!

Living with a stoma requires preparation, but it doesn’t mean you have to live quietly or shrink yourself. Confidence grows with time and you deserve to take up space.
 
Managing Odour and Leakage:
Leakage can happen for many reasons; sweat, loose stool, an ill-fitting bag, or sometimes just for no clear reason. We have VACTERL, there isn’t always an explanation.

For odour, I’ve found a few things that help.
I use a drainable bag so that I can empty it when needed without removing the whole pouch.
Putting a small sachet of Absorbagel into the bottom of the bag helps bulk up my stool and removes smell.
Another useful tip is to put a little water down the drain opening before sealing it again.
This helps make sure no stool is stuck around the outlet when you velcro it closed. Sometimes a bag can get “burped” accidentally, for example, if I squash it and
gas escapes. It doesn’t leak, but it can release an odour.
 
Diet and Hydration:
Diet and hydration can vary greatly, especially if you are a TOF/OA adult or have other associated conditions.

After surgery, it’s important to speak with a dietician or nutritionist so they can help guide you on what works best for your body.

Keeping a food diary can also be very helpful. Write down what you eat and drink, and note how different foods affect you. For example, record if something makes you feel gassy, causes stomach pain, or affects your digestion. Share this diary regularly with your medical team. It can help them understand how your body is responding to certain foods and allow them to give you more personalised advice.
 
Clothing and Comfort:
You can wear most clothes with a stoma, but some people prefer high-waisted trousers or specialised underwear for added support.

Try to avoid anything too tight directly over the stoma. Experiment with different styles until you find what feels most comfortable for you.
Remember - confidence comes from feeling comfortable in what you’re wearing. Personally, I love wearing woolly leggings in winter.

My advice is simple: wear what you like, be confident, and choose what makes you feel comfortable.

Staying active:
Staying active after surgery can really help your recovery and overall wellbeing. I go swimming, dancing, play wheelchair rugby, and enjoy cycling and I live a very fulfilling life.

Right after surgery, start gently by walking around the ward if you can. This helps release trapped gas and reduce bloating. When you get home, continue walking regularly if you’re able. 

If walking isn’t possible some days, chair yoga can be a great alternative. Chair yoga stretches your core and helps release gas and tension. It is especially beneficial for people with mobility difficulties, as it allows you to engage your muscles, improve flexibility, and get gentle exercise even when standing or walking isn’t an option. I personally love it and rely on it on days when I can’t walk.

Be yourself and don’t be afraid that you won’t be able to return to the things you enjoy.
You might need to adjust how you do them, but you can still live fully and learn to love your new body.
 
Travelling with a Stoma:
Travelling is entirely possible with a stoma. Just like you would with medication, make sure you pack extra supplies in case you need them.

If you’re flying, you can ask for an additional medical bag to carry your stoma supplies.
Your stoma nurse can also provide a travel certificate or leaflet that explains your equipment and what is in your bag, which can help when going through airport security.
At security, you can request a private check with a security officer if you’d prefer not to discuss or show anything in front of other people.

Many people also find the "Sunflower lanyard" helpful, as it discreetly indicates that you may need extra understanding or support.

Planning ahead and carrying spare supplies can make travelling with a stoma much easier and more comfortable.
 
Support:
You are already on this website, so take the opportunity to explore the links and resources available here. You can also take part in discussions on Facebook groups or other support communities if you need further advice or want to share experiences. Connecting with others who understand what you’re going through can be incredibly helpful.
Remember, you are not alone.
 
Staying Positive:
It’s normal to feel anxious or frustrated at times.

Remember that a stoma is a management tool, not a cure, and everyone’s journey is different. It’s about doing things your way and learning how to live well with it.

Over time, many people find confidence in their new routine and body. In my own experience, I’ve actually found people to be more understanding about my colostomy than when I was having soiling accidents before surgery.

Give yourself time, be kind to yourself, and focus on building a life that feels good for you.
 
Conclusion:
Everyone’s experience with a stoma is unique, but with practical tips and a supportive mindset, daily life can be managed with comfort and confidence.

If you’re ever in doubt, always consult your stoma nurse or healthcare professional, they are there to help. You’re not alone on this journey, and with time you will discover what works best for you.

We wish you the very best on your journey, and we’re so glad you found us.