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?
I write most things from my own perspective and experience, but in the immediate aftermath of my stoma surgery I was also recovering from the infected abscess, sepsis in the fistula tract and my 4th degree tear. The combination of all these things, in addition to the stoma opening on my abdomen, meant that my mobility was affected for a lot longer than most people who simply have stoma surgery. Even so, after 10 weeks I was still in the pool with my baby!
When I first came round from the surgery, I was in a lot of pain, but I wasn’t given anything other than paracetamol until my mother made the nurses provide me with oramorph (liquid morphine). Until I was given that I was unable to bend over, or sit up in bed, but once I had the painkillers I was able to ease myself up into a sitting position. The biggest drawback to your independence when you initially have a stoma, is that you must not bend over, or pick anything up, as it is your stomach which has been cut into. This of course is little different to what happens following a c-section or a hernia operation, both surgeries being relatively commonplace. I am writing an article with the top tips for people following stoma surgery, but one of mine is that I had a litter picker which meant I could pick up small things I had dropped, and keep a bit of my independence.
The limit on bending over lasts for several weeks, which is of course very frustrating and limiting. Just as with after a c-section, you cannot drive until you are able to perform an emergency stop, which for me was about 8 weeks. Many people worry a lot about the recovery, but my opinion is that countless women have c-sections during the birth, and they find a way to manage these limitations while also juggling a small baby. The benefit with planned stoma surgery is that you can plan in advance how you are going to manage without a car, or with assistance in the home if you cannot bend over.
It took me a few weeks to be able to walk without discomfort, but mainly this was due to my perineum injuries. I would feel the stoma pulling on my stomach when I walked, so I used to gently hold onto my stomach, and drag my left leg (as my stoma was on my left) a little to prevent it pulling as much. I also tired very easily but I was battling a lot of urine infections and other problems which will have contributed to my exhaustion – not to mention looking after a newborn baby overnight with a husband away!
The bags leaking
This was definitely my biggest issue at the start, but I think my problems were worse than other people who undergo stoma surgery, as I had just had a baby and my stomach started to shrink weeks after that. One thing I didn’t know, was that your stoma changes in size as your weight does, which means that bags which used to fit won’t fit any more. As my weight fluctuated a lot initially, I had a lot of problems with my bags. It is very common with new ostomates that it takes time for their stomas to settle down. I had a lot of wind (which means noise and bag emptying) and often when I was changing the bag, poo would come out of my stoma and go on the floor. I am now able to recognise the signs when poo is going to come out of my stoma – I get a movement feeling just before it opens, and if I am watching it with the bag off I can see it making a certain move. All it means now is I have toilet paper ready just in case.
When I talk about bags leaking, most people will imagine a horrific torrent of watery poo bursting out of the bag and gushing down your legs. This is not the case. I am referring to something called pancaking – which is when poo forces its way under the adhesive which holds the bag onto the stomach, and which will eventually make its way out from under the stoma and onto your pants and clothes. You get quite a bit of warning before this happens. You can feel it moving under the adhesive, it feels warm and sometimes you might get a whiff of poo. But then you have time to go to the toilet and change your bag. However, once the size of my stoma steadied, and I found convex bags which fit my stoma much better, the issues of pancaking pretty much stopped.
I personally have never had a leak in bed, apart from the very first morning when I woke up from surgery – nearly 10 years ago. I’ve only had it leak onto my clothes a handful of times in a decade. Not bad odds really.
It also takes time to work out what affects your stoma and what doesn’t – for example, what causes you to have wind, or what makes your stoma activate more. It does get very annoying if you eat something which gives you wind, as you have to empty the bag of wind – sometimes overnight too. I still do have to get up in the morning when my bag is full and empty it, I can’t just lie in bed all morning.
How often you change your bag depends on what bag you get. I have a drainable bag so when it is full I simply open the bottom of it, drain it into the toilet, use a bit of toilet paper to wipe the bottom of the bag and carry on. Some ostomates use a water spray to clean out their whole bag each time they drain it, but that seems like a huge unnecessary faff to me. I empty my bag in the morning when I get up, maybe a couple of times if there is a lot of output, and usually after each meal. But everyone’s output is different. I am now much more confident with my bags, so I am happy to leave a full bag on if I am sitting down as I know it won’t just leak or come off. I put on a fresh bag about every other day, but some people can leave them up to 5/6 days. Some people opt for a bag which you have take off every time it is full but that seems wasteful to me. The empty bags go in a very strong little plastic bag (usually given free by stoma companies, or you can use doggy poo bags, or nappy bags), and I just put mine in the main bin. I use the sanitary disposal bins in public toilets. You don’t have to use disabled toilets when simply draining a bag, but I use them if possible when changing them so that I can wash my hands straight away.
When I first got my stoma I was unable to sleep on my left hand side as that is where the stoma is, I found it uncomfortable, especially if there was output in it. I can sleep however I want now, but it is often still habit not to sleep on that side. Even if you literally do somersaults in bed it won’t just come off – remember I have gone skydiving and done a 7 hour half ironman triathlon with just one bag!
Yes the stoma will make a farting noise and there is little you can do about this. I press on mine in the middle and it can stop the noise coming out, but usually I just cough, or actually nowadays I don’t do a thing! I just tell people what it is. This used to absolutely mortify me in the early days, I wanted the ground to swallow me up. I’m so used to it now.
Sex was a big thing at the start, not least because of my tear and infected fistula. I wear a waistband, which of course does make for a little less spontaneity, as I have to reach over and grab one, and I like to have sex with an empty bag. At the beginning I would put on a fresh bag before I went to bed just in case….! I still won’t have sex without a waistband covering it, as I hate the idea of my bag touching my husbands skin. He couldn’t care less of course – as long as he gets his sex he couldn’t care about the bag, I am just the same to him with or without the bag. I have read of situations where partners have left people who have a stoma, but 99% of the time this is because of other issues and they are using the stoma as an excuse. If they really love you they won’t mind at all. If you are single and have a stoma bag then the right person also won’t mind. There are tons of businesses now where they have beautiful sexy underwear for ostomates too. I have a friend who is a sex therapist, Sue Lennon, and she will be more than happy to talk to you and your partner if you are experiencing issues (Sue Lennon. Psychosexual Therapy.)
Does it have to be loose or can you wear tight clothes? This is down to personal preference really, I’ve never really been into tight wearing clothes. The bag isn’t really visible to be honest, and if I look at pictures I can never see it unless I really look for it. You can wear tight clothes if you want to, there is nothing stopping you from doing this. It won’t impact on your stoma at all, but if you have eaten something which gives you wind then it will be more noticeable so you will want to empty it more often. It will also then be uncomfortable. That said, I have worn all sorts of clothes – jeans, tight dresses, skin tight tops, swimming costumes and even bikinis (you can see the bag with a low cut bikini though). I like to wear a lot of jersey dresses and leggings, but this is also my style as well as for comfort. There are countless sites on Instagram dedicated to wearing lovely clothes with an ostomy, fashion is simply not my speciality so don’t let having a taste in fashion put you off having a stoma.
There is literally NOTHING that you can’t do with a stoma. I have done skydiving, scuba diving, triathlons, swimming, camping. I have flown in aeroplanes. I have never experienced an issue with my stoma in these situations, not really, although I might get in a fix if I eat something I haven’t before and it makes my stoma activate quickly. Then I’d have to change it while out on my bike but that’s never happened to me dispite years of cycling hundreds of miles.
These days there are so many products out there on the market that there is no need to experience skin problems, unless of course you are allergic to the bags which I have never heard of! You can ask for samples from all the different companies out there (your stoma nurse can guide you with this), and just go through the process of finding which bags work best for you. There is one bag company which I have a bad skin reaction to, so I simply don’t use those bags. There are skin protector sprays and a type of stoma talc you can use to protect your skin before you put the bag on. There are adhesive remover sprays which you use to remove the bags so that your skin doesn’t tear or become irritated. I have no issue with the skin around my bag but if I did I know the stoma nurse or ostomy community would be able to provide answers!
Yes….the output smells when you empty it as it is poo! But you can’t smell the poo when it is in your bag on your abdomen – the bags are brilliantly designed, and most of them have a filter to let out air but no bad smell. I am hyper sensitive to poo smell coming off my bag so I am alerted way before any serious pancaking, but I definitely don’t smell of poo. If you are worried then put on a fresh bag when you go out, or every day. There are even products which you can put into your bag to stop it smelling even when emptying it – people who poo out of their bottoms don’t have that option!
Going out and about
I have in my car, at work and in my handbag, spare bags, wipes, sprays and waste bags to put the used bags in. It’s no big deal and the supplies can easily fit in my bag. I also have spare knickers sometimes just in case but they’ve never been required.
Having a job
I have done lots of different jobs with my stoma, and really the main thing is access to a toilet is needed. However, without my stoma I would be incontinent, and so access to a toilet would still be a top requirement. I have done jobs like care work, a tour guide, a swimming teacher (in the water with kids for hours), lifeguard, to my current office job.
Why do I think a stoma is a good option?
Reading through all the above you might be thinking that having a stoma is a truly horrific idea. All this talk of leaks, bag changes, clothing issues, and skin soreness. But yet I still recommend a stoma. Why on earth would I? The fact is, even though I was only incontinent a week, it was enough for me to never want to go back. I smelt. I had no control. I had no idea when my pants would fill with poo. What happened if I had diarrhoea? What if they repaired me and it didn’t go right, my stoma was reversed and I was still incontinent? Why is a stoma a better option?
Take the bag leaking. Firstly, you get a warning usually – you can feel it, or maybe smell a tiny bit. You then have the chance to go to the bathroom and change the bag. Bingo, all sorted. If I was still incontinent there would be no warning, there would be poo in my pants and I would be stuck smelling like that until I had a shower and got changed. If I have diarrhoea my bag will fill very quickly with poo. But that is better than my pants which won’t keep the poo in one place, and will allow it to go down my legs. I could wear adult nappies but that won’t stop the smell, nor will it prevent soreness starting around my bottom from the poo sitting there. I wouldn’t be able to go swimming without my stoma. I wouldn’t be able to run, cycle or really leave the house. I am now so used to my stoma I know what I can and can’t eat. I know when my stoma will activate more. I know my body so well I can judge when I should empty my bag before I get another output. For all that I have no control over my stoma there is actually a lot more certainty with a stoma than with incontinence. My bag is my poo safety net, a specially designed one which doesn’t smell, and which allows me to live an active life.
The best thing of all is that I actually simply forget about my bag altogether! It is simply part of me, part of who I am and part of my way of life. It doesn’t stop me doing anything, and I am not constantly worrying about future operations which may, or may not, fix me. My consultant said to me after I had had the bag for a few months, that I would never have chosen to have a stoma, but that in 7 years she’d bet that I would be so happy living my life I wouldn’t think about my stoma at all. I could hardly believe what she was saying, but she was right! And of course I got to that point well before 7 years had passed.
There are tons of support sites and organisations who can help answer questions, or provide support before and after surgery. You are not on your own. Check out the links to the recommended organisations on my website.
What do I wish I had known about having my stoma?
That it wasn’t going to stop me having a full, active happy life doing ALL the things I did before! My life is wonderful, happy and exciting!
(For those people who already have a stoma, but who are struggling to accept it, I have written an article explaining how I found peace with mine: https://www.stomachameleon.com/post/how-i-coped-with-my-new-stoma-and-traumatic-birth)