Cancer 105

Trigger warning – may contain elements incompatible with breakfast, but I have said before that I wish to be honest with this blog. This is a good example.

Instead of cancer, I am going to talk about my stoma. It plays a big part in my life now. I have described it previously, so this is an update on my experience for new readers and those who like this kind of thing. I have a permanent stoma due to having lost 25-30cm of the descending colon which had a large cancerous growth. Instead of faeces packing into said colon and being eliminated in the normal manner, I now have a hole on the left front side of my abdomen. The hole looks like the end of a wet and empty sausage skin which has been sewn onto my skin. The hole is usually crinkled closed. It is big enough to stick a finger in if you are so inclined (imagine sexual perversions if you will, I prefer not to), and peristalsis is visible once it gets going, sometimes warning me that it is going into action, often not.

I had no knowledge of stomas before I woke up in a hospital bed with a bag attached. Before my operation, I was told the risk of having a stoma was under 10%. A low risk, but some of us have to be in that 10%. With help from stoma nurses, who taught me the procedures, I quickly got used to it. They were great, When there isn’t much choice you can get used to most things (this should apply in so many ways in society but that is another subject). It has been generally fine. The system works very well considering the difficulties, though there are leaks, sometimes in quite embarrassing places. I have a card that indicates a need for emergency toilet facilities but I have never used it.

The colon usually kicks in two or three times a day, one of which is usually in the middle of the night, after which I usually need to change the bag. This is peristalsis, contractions that force the faeces along the colon, where normal people have a sphincter that enables control of when the faeces is ejected from the body. As my anus is now detached from my colon I have no such control and faeces emerges when it damn well wants to, either into the bag or – usually at night when I have removed the bag to let air against my skin where the bag usually attaches – straight into the open, where I deftly catch it with tissues and put it into a plastic bag similar, but slightly bigger, than the ones used by dog walkers.

At home I have a bin I put the bags in before they are then put into the general waste bin and taken away by unsuspecting binmen. If I am in a disabled toilet there is usually an appropriate waste bin. If I am in a normal public toilet – perhaps in a pub or cafe – then there is usually no appropriate bin so it goes in the bin for normal handwashing tissues. If there is no bin in such a place I usually leave it in the toilet because it cannot be flushed and While I will inform someone I am not carrying a shit-filled bag out of a toilet into the public area of a pub or cafe. There are limits. I sometimes have to change it in the car, perhaps in full view of passersby. It isn’t always good for one’s self-esteem.

The system generally works well. The bags are well made. When I fart – yes, I have no control over that. It can happen in embarrassing places – they have a filter so there is no smell. It is one advantage I have over those without a stoma, no smelly farts. The bags stick effectively to the skin around the stoma, and stay stuck as the bag fills. The capacity of the bag is nearly always sufficient for a good defaecation, though it can hang heavy when full. At first, I was a little embarrassed in public with a full bag sticking out of my well-rounded abdomen, but I tend to wear shirts loose (yes, I can get them that big) and care less than I did. I am always touching it to see how full it is because I cannot always tell whether it has been working or not. I lack sensitivity around the stoma. Once it is full I change the bag.

In a disabled toilet I stand over the baby changing shelf, in a normal toilet I sit on the toilet, in the car I sit in the driving seat, at home I sit on a settee. I set out my kit, new bag, anti-adhesive spray, wet wipes, dry wipes and plastic bag. It is important to have it all ready, when the bag is removed there tends to be a shit-stained area around the stoma, and sometimes, particularly if the bag is very full, the faeces will continue to emerge as the bag is removed. It takes skill to get the tissues in place so it doesn’t create a mess. I haven’t had many major accidents during this process. On nearly all occasions I avoid getting any shit on my hands at all. Impressive eh? Once I have cleaned up I attach the new bag, seal up the mess in the old bag and dispose of it as indicated.

To return to the night. I am usually awake for several hours at night, and for perhaps a couple of hours I leave the stoma open to the air. It may be old-fashioned but I like the area to breathe. The consequence of this is that I have to keep my kit out the whole time. I have a full dry tissue on my right leg, and half dry tissues on my left (half tissues being sufficient for most purposes and I like to do my bit for the environment). The wet wipes are also ready. Top tip, never have an open stoma and no ready tissues.

Faeces usually emerges a few times while I have the stoma open, though sometimes nothing emerges. It is an interesting process, a little like a volcanic eruption. For the latter, there are some warnings that an eruption is going to take place, a little shaking, some rumbling, and then the spew of lava. For the stoma, I often detect movement, not through neuron function, but by noticing movement while I sit there reading my book. It farts. The stoma opening contracts both in and out. Sometimes there is no action, sometimes I have several seconds before action, and sometimes it emerges immediately. In terms of size, the immediate action is often a big usually soggy lump of faeces that keeps coming and needs more than the standard half tissue, which is why the full tissue is available. I gather it carefully as it comes out, wiping the bottom clear and put the now heavy tissue in the plastic bag. I then use a wet wipe to clean up, prepare more dry tissues, and wait for the next emergence. Often, the amount of faeces is small, and it will often just stick up out of my abdomen until I gather it which I do more or less immediately.

I keep the area clean. The wipes work well. Eventually, when I am bored, when I think there is nothing new to emerge (that is guesswork), or sometimes when I want to go back to bed, I stick on the new bag, dispose of the full bag, and carry on. Don’t tell anyone but I have been known to weigh a particularly heavy bag. I had one that was over 500g. I was very proud of that. Heavy ones are usually over 300g. I do not keep a record so don’t ask.

There is variation in faeces partly relating to what I eat and partly due to chemotherapy. During the three days of the latter every fortnight, I tend to initially have constipation for a day or two and then diarrhoea for a day or two. It was a bit disconcerting at first, having a period when nothing comes out. Then it comes out quite solid, and then very loose. For the latter, it pays to be deft with the handling of tissues for emergent material. Again, I am well-skilled. There should be a Stoma Olympics. I would win it hands full.

The final problem I have is that I have a hernia the size of a pineapple around my stoma. This is fairly common but it means I now usually wear a belt in case I fall apart. I have spoken of this before. The problem is that while the belt compresses the hernia so I don’t fall apart like a cartoon character it also compresses the bag. Peristalsis is a strong function. If it is going to force faeces out then that is what is going to happen, despite the bag being compressed against my abdomen. If it can’t get in the bag it goes sideways, breaking the adhesion, leading to a leak. Sometimes the leak is large and smelly. I have to get somewhere to change immediately. It has happened in a cafe, happened in a shop, it happens anywhere. It is a mess, with shit leaking out the side or the top, getting on the belt, perhaps getting on my clothes. It is the most unpleasant aspect of the stoma experience. I can’t wait. I quickly find somewhere to change. I carry the changing materials in my trouser pocket. Fortunately, I have not yet forgotten to carry them. It will happen at some point.

I do find the leaks embarrassing. I don’t hang around waiting for people to say anything. Sometimes they must notice. I will leave the extent of a bad leak to your imagination. No, of course I won’t. What happens is that the faeces leak out from one side, both sides or all around, get on the belt if I am wearing it or my shirt if not, and sometimes both. I can do nothing until I am in a position to do the full change as I need my wipes and the waste bag ready. When I am ready I wipe the worst away from the leak, remove the bag as usual and clear up the rest of the mess. It can take quite a few wipes. If I have to use my pocket emergency kit then it is just wet wipes, which get the job done quickly. If I am in a toilet I will rinse my belt and my shirt. If I am in the car I just wipe it off as best I can and then find somewhere to change.

I always have to remember to carry my stoma equipment. I wear trousers with a side pocket I keep the emergency kit in (usually 2-3 bags and ancilleries). I sometimes have a shoulder bag with further supplies (perhaps 5-6 bags). In the car, I have a toilet bag (10-12 bags), and at home, I have another toilet bag (10-12 bags). I have several drawers full of spare bags, etc. When supplies start to run low there are companies that resupply me. Some elements (bags, adhesive) are on prescription so I have to contact the company, they contact the GP, the GP issues the prescription, then I am sent a boxful of bits and pieces. It was more of a logistic issue when we went away to France for a month. I had to make sure I had enough kit as it is not something you can buy in a supermarket, even a French one. Using advice I ordered at least twice as many bags (plus ancillary kit) to make sure I had enough. I packed most things into a big bag and put the bags into a huge plastic bag as there wasn’t enough room. I also have to carry a lot of drugs both for my heart and for my cancer. The latter includes sickness, diarrhoea, and painkillers. For my heart, I have four separate drugs, and I mustn’t forget my gout treatment. Gout seemed so serious a few years ago, now it is a minor affliction. Anyway, I didn’t run out of anything.

I am fortunate that I don’t have a problem with shit. In the distant days of bricklaying, I worked in open sewers, down manholes, in toilets, so I was used to other people’s mess as well as my own. I imagine it is difficult for some people. I hope this has provided some illumination of the joys of stoma-hood, and if you are unlucky enough to get a stoma in the future then you will have more understanding than I did. I have now lived with it for nearly a year and as I said, I am used to it most of the time. It is only when it leaks in public that I can get embarrassed, or when it lets out a good strong fart (it often makes the same noise as you do) in a public place.

There are no advantages to having a stoma. It is not something anyone wants. I don’t want it, but the alternative is much worse. It should keep me going for the rest of the time I have. The bit I am not looking forward to is being so ill that I can’t change it myself. And there we have the cycle. A baby has to have its nappy changed. Then we learn to use the toilet, and at the end, some of us revert to having our nappy changed.