Stoma being the Greek word for ‘opening’, refers to any opening made in the body. Where the bowels are concerned, the intestine is pulled through a hole into the stomach, turned inside out, and stitched down to allow poo to exit the body. This reason for this necessity can vary from Cancer, IBD or Hirschsprungs Disease, to name but a few. The past month saw my 1 year old go through stoma reversal surgery, whereby the intestine is pulled back through the stomach, and the stoma is closed. Sufficient working intestine (wherever along the digestive tract it is), is pulled down and stitched into place for poo to exit the body through the anus. How and where exactly near the anus this is done, varies according to the type of method preferred by your surgeon.
The genetic disorder Hirschsprungs Disease is carried by myself and my two boys. Following stoma formation at a week old due to being born with a non functioning colon, this operation was estimated to take 8-9 hours long, followed by a prolonged hospital stay. A surgery like this takes planning and preparation if it is scheduled, and will bring great cost to a family financially, mentally and logistically. You need to consider the following:
- Who is going to stay overnight?
- How is it going to affect your job and can you take leave?
- The potential cost of parking, petrol and food.
- If you have other children at home, how will you support them?
- If your child is of school age, what will they miss of their education?
- Are you clear of what the procedure will be, and have you asked all your questions beforehand?
There is so much to think about it can be very overwhelming. Make sure to write a list or keep notes on your device to keep track, adding any extra things that come to mind. Talk it through with your nearest and dearest, and share your worries and concerns. Living in a hospital environment, and seeing your child have serious medical intervention creates trauma for all involved. No one wants to see their child endure such a thing. As a family, it will separate you and stop you being able to live your normal routine being extremely disruptive. Try your best to keep to the same routine for those still at home, as difficult as it is. For my eldest, who couldn’t visit his brother due to restrictions in the hospital, we made posters for the hospital bed space, and had video calls to keep in contact. Positive updates, and breakthrough moments were shared, and checking in to keep an eye on how he was dealing with it was essential.
For any couple who has a child having an operation, it creates great strain and separation when typically only one parent/carer is allowed to stay overnight. We made sure to do video calls, switch places to give each other breaks where practical, and check in on each other with support and lots of love and comfort along the way. I found this the hardest part when through such upsetting times all you want is a cwtch with your best friend, as you see your child going through such a tough experience. In this respect, I am extremely lucky to have an incredibly hands-on, supportive partner, where we work as a team and tackle it head on together.
Practically there is lots to remember to have at hand in hospital:
- Long charge cables
- All the snacks you can carry
- Hydration
- Something to do that isn’t screen based to give your brain a rest, it is so easy to just scroll and watch Netflix
- Lots of nappies as you need to change them with every poo (however small) to make sure it doesn’t make the bottom really sore by sitting in poo for long periods
- Plenty of loose clothing for the child being mindful of new scars and wounds
- Home comforts and soothers
- A blanket or pillow that smells of home
- A few toys that are not taxing to use
- Dry shampoo is a saviour when you can’t get around to washing your hair those first few difficult days
Most importantly, when the child starts to poo from the bottom, the skin will become sore and has the potential to break down and bleed due to a high level of acidity. Ensure you have prepared for this, and come armed with suitable creams or combinations to start using straight after surgery. Your surgeon and stoma nurse should have discussed this either before or straight after surgery. The bowel will go to sleep for a number of days before working due to being handled in surgery for so long, so don’t expect a poonami straight away!
Waiting for the first poo is quite the emotional rollercoaster. You don’t know what to expect, how much to expect, and how the child will react. We were overjoyed and shocked to see it, and couldn’t quite believe it was happening. Take the win, and any other win you can get as cannulas aren’t needed anymore, and pain medication is reduced. It will be a long long road ahead, but you will all get there!
