Hi, my name is Clare, and in April of 2016 I was given a permanent ileostomy due to severe ulcerative colitis.
Operational risk
The surgeon saw me on the ward on a Saturday, and on the following morning I was in for an operation. This didn’t go perfectly, and afterwards I became unwell. It was discovered that I had had something called a rectal stump blowout, which caused pelvic sepsis, and the bottom of my scar opened up too. As a result, I was in hospital for nearly 3 months. I couldn’t even eat; I needed to have a nasogastric tube to feed me during the night. Eventually, after 6 months, I was well enough to have the rectal stump removed.
Now, I know it sounds awful, and it was, but I don’t doubt that I would still opt for stoma surgery than live with ulcerative colitis. I just would have liked the opportunity earlier, and then maybe I might not have had so many complications.
I am now awaiting more surgery to have muscle taken from either my thigh or bottom to fill the empty space where my rectum and anus used to be, as I developed a persistent perineal sinus tract. A plastic surgeon will be involved with that one; maybe I should ask to have a J-Lo bottom when he is done? Alas, I don’t think it is that kind of plastic surgery.
Bowel surgery can result in some unexpected complications
Remembering not to forget
I have had my share of ups and downs, including some moments that still make me laugh to myself.
One night, my family and I were staying at a rather famous hotel, and to my horror I woke up in the middle of the night to a leak. Now, as luck would have it, it hadn’t touched the sheets. I went to the toilet and saw that the bag had just come away a bit, and that was where the leak was. I tried to convince myself that I could just put some tissue around it for a few more hours, but when I lay down to sleep, my mind would not stop telling me that sooner or later I would need to change it. I climbed out of bed and began getting my kit together.
Nightmare of nightmares, I soon realised that, not only had I forgotten to cut a hole in the pouch, but I didn’t have any scissors with me either. Stuffing a wedge of tissue over the bag, I got dressed and made my way down to reception. I approached the young man at the desk and asked him whether I could borrow a pair of scissors. He was insistent that he could not lend them to me, and he would not give in, no matter how much I begged. He did, however, offer to cut what I needed cutting for me. His less-than-perfect English made explaining anything a challenge, especially in the early hours of the morning. However, I began going through what a stoma pouch was, exactly how it needed cutting and why it was essential that this was done as soon as possible. When I was done, he just looked totally lost.
I was about to despair, when a voice called out ‘Just give her the scissors!’. It turned out the hotel manager had been listening to us from around the corner the whole time, and had waited this long to appear as saviour of both of us. Since then, before I go anywhere, I have always remembered to either cut the holes or pack a pair of scissors.
Recovery from surgery doesn’t always go as smoothly as we’d like it to
Loud and proud
Despite these complications, life with a stoma has been pretty okay for me so far. To help adapt to my new situation, I decided to name my stoma. After much deliberation and input from my friends and stoma nurse (who insisted on calling it Tommy), he was christened Tomas. I found an app that allowed me to create a cartoon stoma, which has helped me introduce his personality to the wider world. He has even had a turn at poetry.
To help me with my journey and perhaps help others, I decided to start up a blog. I am very open about my stoma and don’t have a problem with people seeing it either, so I am happy to be quite graphic in parts of my blog.
I think most people do need to see what a stoma actually looks like. When I left hospital, I received a handful of booklets; I particularly remember one picture of a torso with the cutest bud-like stoma I have ever seen, but you could tell it wasn’t a real image, and it gave me the wrong impression of what a stoma actually looks like. I know that stomas come in all different shapes and sizes, but a real one, with all the issues that go with it, is a much more accurate representation of life with a stoma than a perfect computerised dot on the skin.
Clare does not doubt that her operation was worth it
Bags for life
This is why the perfect pouch varies so much between individuals, and finding the right one is so important. I have a fistula (I know, more issues), which is an extra channel that lets waste out at the base as well as the top of the stoma. This means the supplies I use have to be able to accommodate this by creating a seal around the base that protects my skin from the fistula’s output. Luckily, I have found what works for me—the Eakin Cohesive seal—and I think that without that seal my life with a stoma could have been so much worse.
As it is, I am managing my stoma perfectly well. All it takes is careful skin preparation, the right supplies and, of course, occasional advice from Kate, my wonderful stoma nurse at the Queen’s Medical Centre in Nottingham.
Clare Mee lives in Nottingham and blogs about life with an ileostomy