HOW: my stoma affects me

Many people may wonder, what is it like to live with a stoma? Well, after 10 years it feels just normal for me. While some call it a form of disability, it has not stopped me doing anything that I want to do which includes: cycling, yoga, swimming and even surfing (although I am a very poor surfer!). However, I cannot deny it causes problems and takes some effort to look after at times. See below a number of thoughts about how I deal with it. (I will have another page that gives a lot more detail, a video and discussions on some of the tricker bits like intimacy with a stoma, but be warned it will not reading for everyone!)

How has it affected me emotionally?

This is the one that should not be underestimated. I can still remember the "eugh" feeling when my Mum fell ill and had to have a temporary colostomy (see here for brief description of the different types of stomas). When I fell ill in late 2007 with colitis (diagnosed as Crohn's, but possibly Ulcerative Colitis), I did not realised how ill you could get, I mean it's only your bowel isn't it? Of course your bowel is where you get all you nutrients, and when it stops working, not only can you get the most painful cramps imaginable together with frequently running to the toilet (more than 20-30 times a day at the worst), but you start becoming highly malnourished. From the time I was persuaded to go to hospital at the start of August 2008 until the operation on 26th August I had got considerably worse and had lost over 20 kg (3 stone) in weight. While I was in hospital getting worse and worse, the one thought I had was "keep the surgeons away from me, anything but a bag." But then, as I got very ill (I was even unable to walk) they told me I would die very soon unless I had the operation. So when I woke up after the operation, rather than disgust, I greeted with my stoma as a life saver. While many may feel a negative feeling when first encountering the thought of a stoma, the reality can be highly positive when you actually have one and start feeling that you are getting your life (literally) back again. This, and having to get well to earn money and look after my family gave me a lot of the motivation I needed to cope with it. But I was still left wondering: how will I tell other people; what will they think; will the bag leak; will it smell; what clothes will I wear; what will I be able to eat; will my wife every want to touch me again .... ? The fact is there is a social stigma with wearing a bag, and I hope if more people talk openly about it, that this may be reduced and stop ...

What is the stoma actually like?

I will show a picture on my more detailed page, but not everyone would feel comfortable seeing one (although I hope you can get over that kind of thing). The surgeon cuts the small bowel and brings it up through a hole in the abdomen wall, then he or she rolls it over back itself (as you would forming a seam) to bring the inside to the outside for about 5 cm and stitches it to the outside of the abdomen. The result is a kind of spout that looks like a kind of sea anemone (and even moves a bit like one!), so the visible part I see is actually the inside of my inner bowel turned on itself.  Then the output of the small bowel empties into a stoma bag. I cannot feel the stoma at all and have no control over it.

What is the bag like?

I will put a photo here soon. It is a pale plastic bag that clips onto a baseplate that "glues" to my abdomen. The baseplate is made from a hyper-colloid (a bit like the material used for blister plasters). At the bottom of the bag is a an opening that is carefully sealed but can be opened to empty it. The bag needs to be changed regularly, I change the bag daily and the baseplate every 3-4 days.

How do you "go to the toilet"?

An ileostomy generally has much bigger output than a person without a stoma as the large bowel's job is to remove a lot of the water (and salt) that has been added by the digestive system and with an ileostomy I do not have a large bowel. Consequently, I have to go to the toilet a lot more frequently. Generally I have to empty the bag about 7-8 times a day (but people with stoma's may need to do this less or more often). Going to the toilet just means emptying the bag into the toilet, not a big deal, but not always easy in a small cubicle. People with colostomys have a very different experience and may only need to empty the bag once every day or so. Sometimes I choose to use a disabled toilet, once or twice this has caused a problem: I can remember one visit to the Science Museum in London when a member of staff tried to stop me using a disabled toilet (I just insisted). A RADAR key is very useful as it gives access to disabled toilets that are normally locked.

Does it smell?

Most of the time no (either that or every one is so polite they never mention it) the general experience is that the bags control the smell very well, just as your body keeps the smell inside. The bag has a special carbon filter to let some gas through without letting the smell out. However, when I empty it, I find the smell is really bad, my family and friends will know what this means, and my work colleagues have probably suffered after I have left the toilet! But lets face it going to the toilet can smell bad for all of us ...

Does the bag leak?

Very rarely I can get a leak. This could be very distressing for some people with stomas, but I tend to take it in my stride. Most of the time I can notice something is not right well before it becomes a major problem and then I can find the nearest disabled toilet to change it (I always carry spares with me). Occasionally, (maybe once a year) it can leak in the night and then things can get unpleasant, once that was in a hotel room, but the hotel staff were very good about it. One memorable bag failure (not actually a leak) was when I had got out of the car during a snow storm (2009 I think) right in the middle of the "magic roundabout" in Colchester. We were stuck unable to move and just as I stood up I felt the bag detach from the baseplate (I had been unable to find a toilet in quite few hours of travelling), so I had to change my stoma bag standing up right in the middle of the roundabout! Luckily there was no mess that time.

What clothes can you wear?

One of the things that worried me when I first had the stoma was: what am I going to wear? How will I look normal? It didn't help that the first person I met with a stoma was while I was recovering in hospital had had a stoma for a while and told me that you could only wear dungarees with a stoma This is definitely not true, but it scared the hell out of me,  somehow the picture of me standing up giving a lecture to my students in dungarees did not feel like it was "me." Initially I felt very worried about anything touching me around my waistband (trousers, car safety belts etc). This quickly wore off but I still need to be careful I do not wear anything too tight. In practice I have found I can wear normal clothes but to be most comfortable I wear braces to allow my trousers to be loose (but not fall down). As wearing braces did not feel like the fashion statement I wanted to make, I have made some I wear under my shirt. The only other issue is that I find cycling in anything with a waistband very difficult, consequently, I wear lycra cycling gear more often than I would normally while cycling (bib shorts/longs work great).

Can you swim with a stoma?

Yes you can. The baseplate actually seems to grip harder when wet and I have never had a failure in a swimming pool. I find a stretchy band to go around the stoma bag works well to keep it in place when just wearing a swimming costume, for watersports (surfing, sailing etc) a wetsuit naturally holds everything in place. I wear a high wasted swimming costume that is designed for use with a stoma. When getting changed in a communal changing room I just casually drape a towel over my sholder to (mostly) hide the bag. Not that I am ashamed of it in any way, but I am conscious that not everyone would be comfortable seeing it. The only time I had trouble was in a very rough sea and I was body surfing in fairly violent waves without a wetsuit...

What can you eat?

I am very fortunate and find I can eat anything I like. However, many people with ileostomies are not so fortunate and find they have to avoid things with too much fibre or things that do not digest well (fruit peel, sweetcorn, mushrooms etc), if they do not avoid these things they can get blockages.

Anything else?

I have to be very careful I do not get dehydrated. The large bowel reabsorbs a lot of water and salts that the small bowel secretes to make digestion work. Without a large bowel it is a bit like having permanent diarrhoea. This is particularly a problem with doing strenuous exercise (like cycling) and when I have a stomach bug. At those times I need to drink plenty of fluids and keep electrolytes topped up. When cycling I mix electrolyte tablets with the water. When I have a stomach bug I use oral rehydration solution (I mix my own).