Updated: Apr 6
For many women who are severely damaged during childbirth, either from a 4th degree tear, 3rd degree tear or a fistula, the option of a stoma as a possible solution to faecal incontinence is presented as the last, worst case scenario choice. There are many reasons of course as to why it is presented as a last choice, once repair surgery, physio, sacral nerve simulation or simple time left to heal have been tried without success. The surgery is a big one, although most I have seen are performed via keyhole surgery, which has a faster recovery rate and leaves the patient with a smaller scar on the stomach. It also fundamentally changes the way someone passes their stool, which is now through a hole in their abdomen where the colon is pulled through from the large intestine, faeces passing into a bag which is attached to the abdomen with strong adhesive. The part of the colon which is out of the abdomen is called the stoma, and the bags are replaced each day, or every few days depending on the personal choice of the patient. The patient no longer poos through their rectum.
My own stoma (colostomy) was fitted as an emergency 7 days after the birth of my premature son, as a result of a missed 4th degree tear which caused an enormous abscess and a recto vaginal fistula (where poo comes out of the vagina through an opening between the vaginal wall and rectum). The primary reason it was initially fitted was to divert the faeces from the abscess which was in the perineum, and the tear from the vagina to the rectum. The intention was to allow the area to heal and the infection to be treated with antibiotics. I was initially told that it would only be necessary for 12 weeks, by which time both the abscess and tear would have healed. It was also hoped that the fistula would have healed too.
Prior to my surgery I had extremely limited knowledge of what a stoma was, although a friend of mine who I had met in the previous few months had an ileostomy as a result of Crohns and Colitis. I knew she had struggled hugely with it as it used to activate (ie, when the poo comes out of the colon and into the bag) a lot when she was changing the bag, and as it was an ileostomy the output was liquid and difficult to contain. Ileostomies (where the stoma is created from the lower intestine) are harder to manage than a colostomy, as the output is much more frequent and watery, so if you have the choice I would have a colostomy. She also had an enormous scar all the way down her stomach and abdomen as it wasn’t done through keyhole surgery, and as a young woman in her twenties she felt very self-conscious. I still didn’t fully understand about the bags – how big they were, when they needed to be changed, or anything like that. I thought that the bags hung down your leg, almost like a catheter does.
Prior to the surgery the stoma nurse helped me to decide where to have the stoma – as you don’t want it where you bend over, or on the waistline of your trousers. I didn’t have much time to faff about deciding, and mine makes jeans or clothes with a low waist tricky to wear. Prior to the surgery I lived in jeans, but ever since I have mainly worn leggings or tights. If you want to see what a stoma bag is like, order a sample, or ask a stoma nurse for one, stick it on your stomach and wear some clothes over it!
I feel very fortunate that I wasn’t really given the option of whether to have the stoma or not – the choice was to have the stoma, or to get sepsis and die. A no brainer… I was also under the impression that it was to be temporary, so that made it much easier to accept at the beginning. This was only the start of many, many months of indecision – not knowing whether my fistula had healed, or whether my sphincter was too badly damaged to ever be repaired. During those months of limbo my mental and physical health suffered dreadfully.
It soon became apparent, after intrusive, mortifying rectal examinations and tests – including repeated “resting strength” tests, and grip tests, where a probe is inserted into the rectum to see how much strength there is in the sphincter, and what the reaction is like to movement – that my stoma would be permanent. The tests determine whether your sphincter is able to control the passage of faeces and is essentially the determining factor in whether you are deemed continent or not. As a result of these tests and ultrasounds, it was decided that my sphincter was too badly damaged to ever be repaired. I would never be fully continent, and so reversing the stoma would be pointless.
I had been incontinent for one week before I had my stoma fitted. During that week I had no control over poo coming into my pants, an indescribably embarrassing situation. I wore adult nappies which I had to ask my husband to buy from the supermarket, which helped keep the poo inside my pants but of course did little to dispel the smell. I remember a friend visiting and commenting that the ward smelt of poo….I knew it was coming from me but I laughed it off and blamed the baby. Once the stoma was fitted this was never an issue again.
Women facing stoma surgery as an option after childbirth have complex emotions. There is distrust that the medical profession which, usually, are the reason why they are incontinent, will look after them and perform the surgery properly. There is the huge mental barrier to overcome, which is the disbelief that such huge surgery is required just because you have a baby. There is the reluctance to undergo more surgery, which might not work, and which will usually only be offered as a last resort once all other solutions have been tried. Exhaustion and the prospect of lengthy recovery, while looking after children, running a house and even having a career, are also key factors women take into account. There is also the very obvious inability to imagine going to the toilet in any other way than sitting on a toilet. How can a bag catch all the poo? How can it possibly work?
So, what is having a stoma really like? Does it solve all your problems, or will it create more?