My ileostomy was created just over ten years ago on the 18th March 2008, so in this blog I thought I would share with you the acceptance, problems and recovery during that time, and so as such, it is designed for the newer ostomate. There are ten items, one for each year of my new life.
I hope that this will give some hope to those who have recently undergone the creation of a stoma, or those about to. Most of the notes here will be relevant in some way.
The biggest piece of advice I can offer a new ostomate is to speak to others who have gone through the same thing you are facing … my stoma nurse suggested this to me at the time, but I dismissed it out of hand. After a couple of rough years, I wish I listened to her! – I had no common point of reference so a lot of my recovery problems were discovered by trial & error.
At times I have hated my stoma, cursed the leaks, and sworn at the extra weight I have piled on. However, as I quite correctly posted on my Facebook page recently, it is a part of me. It makes me who I am and without it, it’s doubtful I would have had ten years of history added to my life.
1 – Listen to the surgeon
It sounds so obvious now, but the moment I left hospital, I thought I knew it all and so a lot of advice was ignored. I’m not the kind of person to sit down and do nothing, so when I was told to do exactly that, I ignored the surgeon and tried to push a vacuum cleaner around. Big, big mistake! – First of all, you’re just not strong enough to do that. You have undergone major surgery, and are very weak – the more movement you take, the less time you are giving your body to recover. You may not see them, but you have several dozen stitches inside you – any one of those can tear when under pressure. Don’t do it! Put your feet up and rest.
2 – Don’t lift heavy items
This was my biggest failure – I totally ignored this and to this day, I am still paying the price of ignorance. Lifting anything heavy can put a serious strain on your abdomen – remember that your stoma has been surgically placed through the muscle wall of your body and onto the outside. Lifting heavy items can cause this muscle mass to follow and also go through the wall and create a hernia. Some you can live with, but mine created a paristomal hernia which is very nasty – Mine bulges which means that it looks like I have a breast with a stoma attached – this is not only unsightly, but makes it difficult to wear certain types of trousers, it also means I have a huge bulge showing under my shirt. My surgeon has agreed to repair this, but due to the damage, it’s actually quite a serious operation and all of it was totally self-inflicted. Save yourself a lot of pain, and don’t lift anything heavy!
3 – Carry spares
Trust me, you will have a leak at one time or another. These will range from minor staining to serious full-blown embarrassment. I have a spare set of ostomy supplies in my desk at work and another on my motorbike. I also keep a spare set of clothing at work …. Just in case. And yes, I have had reason to use them several times. Leaks have been caused by non-adhesion, nicks with scissors (whilst cutting starter holes) and sometimes … just because, so ladies and gents … s**t does happen!
4 – Take your time preparing, cleaning and changing
I know of some ostomates who change their stoma bags every three or four days …. I prefer to change mine daily. There’s no hard and fast rule over this, it’s all down to personal preference. On one side, the more often you change your appliance, the more susceptible you are to causing some kind of skin problem (rashes, tears and so on). Leaving it longer however leaves you susceptible to leaks – your body sheds a layer of skin in around a week, so the longer you leave it between changes, the less adhesion there will be.
Changing the bag daily means you can start to take short cuts …. Don’t!!! – To help prevent leaks, take your time – clean the area thoroughly and allow to try naturally. I’ve taken short cuts before with disastrous consequences and believe me, having a leak in a supermarket is no fun!
5 – Have spare supplies
Sounds an obvious suggestion, but what spares do you carry with you on a daily basis? Have you taken into account delivery problems or delays in obtaining your prescription? There is a fine line between stockpiling supplies and having a legitimate need for spares. As I mentioned earlier, I have spares for work, or my motorbike and have spares at home. All these equate to around a month’s work of extra’s – it sounds a lot, but it often takes around two weeks from the time I request supplies to actually receiving them. This cushion also then allows for further delays should they happen. In all fairness, most delivery firms will, if asked, send you an “emergency pack” of stoma supplies ahead of your prescription if you have run dangerously low. You could also keep some samples on standby.
6 – Wear a Stoma cover
If you don’t think you need one, think again. A stoma cover does exactly what it sounds like, it covers a stoma bag. For me, this offers a second layer of protection against leaks that could stain clothing.
Stoma covers come in all shapes, sizes and colours. I have several, but only of two colours – very light blue and white. These are made specifically for my style and shape of stoma bag. There are several companies or individuals who will make these for you (at cost) – and some allow you to supply your own material should you have a favourite pattern or theme. For me, I don’t like dark colours as they can appear through the shirts I wear in the office, but everyone has their own preference.
For those in the UK, these covers are obtainable on prescription from companies, but not from places such as eBay or individual traders.
7 – Styles of clothing
I can only speak for myself here, but as my stoma was created “on the belt line”, I’m restricted as to what I can comfortably wear. Clearly tight jeans are a no go. I also get uncomfortable wearing a belt. My biggest problem at work is that I sit down all day, waste created via the stoma tends to accumulate on the top half of the stoma bag, it can’t fall to the bottom naturally as I am sitting down. I have found that elasticated trousers work great here. No need for a belt …. They work out a little expensive, but in my opinion worth it in the long run.
Due to my hernia (as mentioned above), I find myself wearing loose tops as this tends to hide “the bulge” of the stoma.
I love swimming – the trunks I use are “high waistband”, but also have a pocket I can place my pouch in, no more stoma bags trying to float away!
8 – Public Toilets
Emptying a stoma pouch in a public toilet can be difficult and not easy. I would recommend obtaining a RADAR key so that you can use one of the thousands of disabled access toilets that participate in the RADAR scheme. These toilets are extra wide and long, plenty of room for you to manoeuvre. They will (in my experience) be a lot cleaner as well.
If you feel guilty about using a toilet designed for disabled people …. Don’t be. As an ostomate, you are entitled to use them. Disability affects different people in different ways, some visible, some not.
Google RADAR keys to find how to obtain them. Although most charge, dig around and you will get them for nothing. I’ve found that the local tourist information office supplies them free (for a small charity donation) – maybe your nearest one does as well?
9 – Returning to work
Everyone recovers from surgery at different speeds. In my case, I was signed off work for six months (as I also had a Panprocolectomy).
By the time six months was up, I was desperate to get away from Daytime television and shopping channels. A UK sick note is just an advisory letter saying that in the doctors opinion, you are not fit to work. However, it is just that, an opinion. If you want to, you are free to return to work ahead of the recommended date.
My advice is not to. You have had major surgery. Take time to recover. Give yourself a rest.
When you do return, your company may well offer you a staggered return where you only work for so many hours in a day and over the course of a month or two, you slowly increase the working hours back to what they used to be. It’s a great idea – with the time off you had, it will be a struggle to start with adjusting back into work, so take full advantage of your companies generosity.
10 – Resuming Sex.
Ha … I’ve got your attention now ….. but all humour aside, it’s a very serious subject. Just when do you resume sexual activity? I can only advise of my situation, not that it’s very helpful as you will note.
The day my stoma was created, all sexual activity ceased and so did my marriage. My (now ex) wife would not look at me with a stoma and would not go near me. I stayed in that marriage for a further 8 and a half years hoping things would improve. They didn’t.
Since my divorce, I have been in a few relationships and I have found it easier to mention the stoma from day one. If the person you are with is genuinely interested in you the stoma should not bother them. I’ve had people not contact me again just because it’s been mentioned and yet my partner now (the lovely Ellie) couldn’t care less about the stoma. Yes, you may think it’s unsightly, but others don’t tend to notice it after a few days.
When Ellie and I spent the first night together it was an anxious time for us both. I was scared of rejection and humiliation and I’ve no doubt she was equally worried about knocking it, touching it or having it get in the way, but it was all fine and no problems were encountered.
In short, I sometimes feel disfigured, deformed and very unattractive, but the way Ellie ignores it is testament to the love she has for me, and I feel very lucky to have her. A stoma should have no impact on a relationship or your sex life, so don’t let it get in the way!
Ten years on my stoma is still a huge part of my life and in a round-about way, it saved my life. Living with a stoma takes a bit of getting used to, but once accepted you tend to forget about it. It only requires a little care, love and attention
My life goes on as it did before the stoma creation – yes, I have part of me living on the outside of my body but as I point out to people, I can now eat anything I want. After all, if it gives me an upset stomach, I’m hardly going to know about it!
Here’s to the next ten years!