I am going to try and tell you simply about stomas, ileostomies and colostomies, so that you are in the dark no more, you don't have to wonder or pluck up the courage to ask me or anyone else. At the end I will include photos of my ileostomy and bags, so if you don't like to look at those sorts of things don't go right to the end!
I too often wondered about these things and thanked God I didn't need one, as usual, you imagine the worst and are horrified by the thought. Before writing this post I thought back to what I had thought a colostomy/ileostomy with container for collecting waste looked like. The nearest I'd got to one was seeing urine catheter bags in hospital, so I'd imagined a tube stuck somewhere (I had no idea where) on your body, going into a large bag, strapped to your leg which would be hidden by clothes! I could imagine the smell following you around offending everyone in your path and that it just wasn't very socially acceptable. Are you with me here? Anyone else with similar pictures in their head or was I the only person who was ignorant and had never plucked up courage to ask or find out?
I May 2007, I was forcibly thrown into the world of stomas and ileostomies, when my husband, who had recently been diagnosed with ulcerative colitis, had an emergency operation to remove his bowel/colon (large intestine) and therefore needed to have an ileostomy and stoma formed. So when in June 2010 I was diagnosed with bowel cancer and told on the same day that I would need a similar operation and would need an ileostomy, that was the least of my worries as I knew what it was, what it looked like, that it didn't smell and that my husband who'd had his for 3 years by then, coped remarkably well. My consultant I think, thought I was still in a state of shock as most patients abhor the idea of having to walk around with a bag of faeces on the outside of their bodies! I was just happy that if that was the price to pay for ridding me of cancer, then it well worth it.
Ok! So now we get down to the 'nitty gritty' of what everything is! First an ileostomy is formed when the whole of the large colon is taken away and a 'stoma' is formed from the end of the 'ileum' the end of the small intestine. A colostomy is formed when only part of the large colon (large intestine) is taken away and the 'stoma' can be formed from the end of the remaining colon. A stoma is the part of intestine that is taken out of your body through a small incision on your tummy, on the left hand side for a colostomy and the right hand side for an ileostomy. It is folded over and stitched to your stomach wall. The dictionary definition for stoma is 'a mouth like opening'. A stoma has absolutely no feeling in it, I touch mine for cleaning purposes and feel nothing. a stoma looks very pink, because it has a huge blood supply to it, as it has no feeling it can bleed easily, so care has to be taken not to knock it or catch it with a fingernail!
Right! So now you know about the different types of 'ostomies' and 'stomas' so now we come down to how the poo is collected! A bag about 4 inches across and 8 inches long with a hole cut in the back of it to poke the stoma through, is stuck onto your tummy around the stoma with a very strong sticky flange! If you have a colostomy, your poo is very similar to what you would normally pass and is a 'formed' motion, but you have no control over when you pass it, which is why it is collected in a bag. At a convenient time the bag is taken off and disposed of and a new bag attached. An ileostomy is slightly different, as you have lost so much of your digestive tract, your poo is not formed and is very loose and watery, again you have no control over it's output and need a bag, the output happens fairly continuously in small amounts and you have to empty the bag into a toilet before it becomes too full! The bag has an opening at the bottom secured usually by rolling it up several times and securing it with velcro! As the bags are securely glued to your stomach and the end of the bag is securely closed, there is no smell and your 'secret' is safe!
How do I cope with my stoma and ileostomy? Mostly, very well, I don't let it stop me doing anything, I've swum, both in the sea and pools and no, the bag doesn't leak. Eight weeks post op I went to Wales and went on a zip wire trail at an adventure park (please don't tell my surgeon!) I do always carry spares with me in case of accidents, luckily it's very rare and I have a change of clothes in the car, which I've never had to use, but they're my insurance policy! The only problem I have is that occasionally my stoma blocks; that is the poo gets stuck somehow and blocks up the system and everything backs up and has nowhere to go...... I get a warning nausea feeling and a gradual pain around my stoma and then know it's going to happen, so it's bed for me for a few hours 'till it clears, as the pain is really not very nice and I just have to put up with it. I choose not to take the very strong painkillers I'm prescribed for it, as once it clears I'm fine and if I want to go out, have an appointment or should be working I can, with no side effects and am able to drive. It's very rare for this to happen, I'm just unlucky and am due to have an op to see if they can untangle the small intestine, where there is possibly a kink or a loop in it.
Everyone who has a stoma, is introduced to a stoma nurse at the hospital they are treated in. A stoma nurse is a specialist nurse, very knowledgable and trained in all stoma related issues. I first met my nurse a few weeks before I had the operation to remove my colon. She talked to me about what would happen and then asked me what I knew about stomas, the look of relief on her face when I told her I was not bothered as my husband had one and there was little I didn't know about the ileostomy I was due to get, was a picture. Some times patients are so ignorant or fearful of the unkown about stomas etc that they refuse to accept that they need one and sometimes actually refuse the operation. This is so sad, as it actually saves your life and as so many people who need stomas have suffered for maybe years with digestive and toilet problems and having a stoma would relieve them of these worries and pain. I have spoken with a few of these people, who have been amazed that I lead a normal life, dress in normal clothes, that the bag doesn't show and that I don't smell. Anyway, I digress, my stoma nurse gave me a practice kit to take home with me, it consisted of a pink foam 'fake' stoma to stick on my tummy and some crystals to put in an ileostomy bag and fill with water to represent the weight and bulk of faeces. Together we talked about the type of clothes I wear and where my trouser waistband usually sits and she marked me up for my stoma site in a lovely purple indelible pen (so that the surgeon knew where to make his incision) and off I went. The next day I stuck my foam stoma to my tummy, filled the bag with crystals and stuck the bag around my pretend stoma, everything seemed secure, I had remembered to close the 'opening' on the bag and off I went to do my weekly Sainsbury's shop. It was summer, I had light clothes on, would people notice the slight protuberence on my tummy, would it fall off, slither down my cropped trousers and reappear at my feet? I felt as though I had a beacon on my head with an arrow pointing to my tummy saying, 'Colostomy bag here!' But I needn't have worried, no mishaps, no people pointing and giggling and when I bumped into someone I knew, there were no furtive glances at my tum, so with morale boosted I went home to see if the family noticed, which of course they didn't, just the usual question, 'What's for tea Mum, I'm starving?'
After my op, my stoma nurse came to see me most days, to check there was output in the bag, to check the condition of the stoma and the stitches that were keeping in it's new place outside my body and to help me learn how to clean, look after it and change the bags. My stoma nurse quickly became my friend, I was constantly on the phone to her about all sorts of minor things, that in those days seemed hugely important. We are still friends, sometimes I speak to frightened patients for her, I help run a support group and give talks to nurses for her on what it's like to have a stoma at first and how they can help patients on their wards have an easier and more comfortable stay.
Having a stoma saved my life as it does for many people, it's not something to be frightened of, with the right help you will adapt easily and realise that after all, it is just another way of going to the loo!
Right! Under here are pictures of my stoma and the bags! Don't look if you're squeamish!!
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A stoma bag for an ileostomy showing the flange and circular opening to go around the stoma. You peel off the backing film (where blue arrow is) before applying the flange to the skin.
This is the side of the bag that is away from your skin, opening is at the botttom, showing velcro fastenings in place.
Opening revealed, this can be folded up again when emptied and sealed with the velcro straps.
Bag in place on tummy! Usually my pants are pulled up to flatten it more so that the lines show less under clothing!
My stoma revealed to the world! Looks very 'red' but that's because of the very good blood supply to it. It stands about 3 cm proud of the skin, has no feeling and after stitching is now permanently joined to my skin. You can just see the 'spout' in the middle of it where it empties! I'm proud to have a 'Bum on my Tum!'
