Post stoma surgery changes people don’t always expect | by Rachel

Whether your surgery was planned or an emergency, I think it is fair to say that we have all experienced something we didn’t expect. This could be an adjustment to your life, health or views that never crossed your mind. Here I share a few that you may be able to relate to:

How your stoma changes during healing after surgery

Upon waking up after surgery, your stoma will likely look swollen and the site around it quite raw and sore. With time, everything should settle. Your stoma will shrink and your skin will heal once your stitches are gone. Your skin may look darker and red for quite a while, and this is all very normal. If you have any concerns at all, make sure to contact your stoma nurse. Taking regular photos of the healing process is a good way to gauge how things are progressing, and they can also be useful as a point of reference for appointments.

How stoma surgery can affect your periods

Women’s health is a topic which regularly comes up on forums and podcasts regarding stoma care, as for women the topic often isn’t talked about enough before surgery, even if the surgery is planned. On the podcast Beyond the Pouch, which I co-host, our women’s special revealed that in a room of four women, none of us had any idea of the changes it could bring. For myself, periods became extremely heavy and painful compared to before surgery, when before surgery, they were manageable and not particularly heavy.

The first stoma bag change when you are on your period can be an utter minefield. There is so much going on and so much to think about, especially when it comes to having a shower or bath. I found myself looking down and wondering which to manage first! Ovulation can also become painful, both in the lower abdomen and the lower back. All of this is something I have seen discussed between women after stoma surgery. This doesn’t mean it will definitely happen, but knowing it is a possibility would have been appreciated, as it can come as quite a shock.

Confidence and body image after stoma surgery

Confidence is not linear, as we all know. Initially I was in the camp of no longer being in pain, so my confidence was very high. I was relieved, grateful to be pain free, and eager to go out and take on the world. Six weeks following stoma surgery, however, things went wrong. Due to previous surgeries and scar tissue, my stoma retracted, making bags unable to function properly and causing a lot of soreness and pain. Refashioning surgery, where a new stoma was formed in the same site, was carried out five weeks later. The point in sharing this is that things will inevitably crop up, big or small, and I have found that this can affect confidence levels. The best way to deal with things is to roll with the punches – because what other choice do we have?

How chronic illnesses and stoma surgery can change relationships

Having a chronic illness can show you more than ever who is meant to be in your life and who isn’t. Everyone has things going on, and when people make the effort to reach out during hard times, despite having busy lives of their own, it truly shows you who matters and cares.

Unfortunately, it doesn’t always show the best side of people, and as a result relationships that mean a great deal can change for the worse. There are two ways to look at it. It can feel devastating at the time, especially when you feel vulnerable and weak, but hopefully with time and perspective you can choose to see it as a moment that reveals who truly belongs in your life.

Phantom rectum sensations after stoma surgery

After surgery, the nerves that used to control bowel movements and signal to the brain that you need to use the toilet are still present. This can cause you to feel the sensation that you need to go to the toilet. For me, sometimes it can be subtle, but other times it can be quite intense. It can feel very full in the rectum and, in more extreme situations, cause cramps, although this luckily is not too common.

It can feel cruel after going through such major surgery to still experience the sensation of needing to go to the toilet. Mucus can also be passed from the rectum. If any of this is affecting your quality of life, or if you are passing blood, make sure to contact your medical team. The best technique I use to relieve the sensation is simply sitting on the toilet and waiting for it to pass.

Finally

There are many emotional, physical and psychological changes that come with having stoma surgery. Juggling them all while trying to return to everyday life can feel incredibly overwhelming.

Make sure you have good support around you, and keep talking. There is a wonderful community of people out there who understand how you feel and have walked similar paths. Being vulnerable with some of them has led to friendships that will last a lifetime.

Rach
@gutsy.mum