Living with a permanent Ileostomy

12th May 2011

When I was first told I was to have a permanent ileostomy I was in so much pain I would have welcomed almost any suggestion if it meant getting rid of it! However, I was not truly prepared for the consequences of living with this procedure yet I hope this blog entry will be useful to others who have recently had it done, or are due to.

After I’d had the procedure and ventured into town as normal, shopping etc, I felt very self conscious and was sure everyone could see the little bulge through my clothes as the ileostomy bag seemed to me to hang idly inside my clothing.

I waited outside the disabled toilet as a woman with a walking stick eyed me up and down disapprovingly. Well, it felt that way and you know how you conjure up stories in your imagination? That doesn’t help a situation like this! I eventually asked her what was wrong and why was she staring at me so intently and she scorned at me that the toilet was for disabled people only. I bowed my head and made my way to the public toilets too embarrassed to argue back and also I didn’t feel I had to explain myself – I was still adjusting to it all anyway!

I was soon learning an ileostomy is not prevalent to everyday modern living and that I felt like no one else knew or had had this procedure. I wasn’t offered any help before or advice on how to cope with leakages or stoma care in public places. Amazing isn’t it? I found a lot of what I needed to know on the internet and now I could write a short book about it actually. (Note to self: perhaps I should write an e-book?).

To get my prescription every month for the new bags from the chemist was also daunting for me, as the pharmacist tended to speak to me in front of other customers – perfectly normal behavior in a ‘chemist’ I know but I was embarrassed by this lack of privacy and wondered how they would feel if the shoe was on the other foot. You see the thing is, just because we can’t see anything different about someone, we can tend to apply broad assumptions, do you agree?

A short while later, I was introduced to an organization called Salts Medilink UK – specialists in excellence of stoma care- and they collected and delivered my prescription every month for me and I have to say what a difference this made to my life. I find the staff helpful and welcoming and so different to the medical personnel at the hospital or even the stoma nurse whose office you were made to sit outside in full view of others walking past as the waiting area was in the actual lobby that directed people to several other medical units and sometimes the wait to see her two hours+..

I was worried about the ileostomy burping… (You’re still reading this blog entry then??) Oh yes, I still had air escaping only I had no control whatsoever and as the child next to me would laugh out loud I would recoil in horror. Or an adult would give a disapproving glare and you could see their noses twitching for an unhealthy foul smell to arrive, only lucky me – it never does! There IS an advantage in this procedure then! (You have to laugh, don’t you!).

As well as lack of ileostomy care advice and generally what to expect in the early days, I wasn’t even told the foods not to eat. This IS a very important aspect of living with an ileostomy! (Second note to self: include Do’s and Don’ts food tips in my e-book).

I’ve progressed well. Having to is one thing but knowledge on how to is quite something else. I can now change my bag in the car with the help of sun visors on the windows. I no longer feel guilty using a disabled toilet. I still worry about going out in public places to eat as my ileostomy empties as soon as I start to eat another meal. But I will discreetly slip away to the ladies and it’s always fine. I do have high and low days. I found it incredibly hard when I had Skye (one of my guardianship granddaughters living with me – you can read more about her in earlier blogs here) and using the disabled toilet to empty bag with a pram etc was quite an endeavour! And when Sophia (Skye’s sister who also lives with us) arrived and I went out with both it was impossible for me. I had to have someone with me at all times who could look after girls whilst I looked after me, and we got by. I still have a few issues like swimming etc. My body – especially my hands, now have arthritis and changing a bag is sometimes slower to do because of my painful swollen joints. But know whatever I go through with this ileostomy is better than living with the incredible pain I lived with and the end diagnosis if I didn’t have this proceedure – DEATH.

I thank god for the staff at Salts Medilink who were my saviours and people I have the utmost respect for.

If you are facing having a Colostomy or ileostomy get in contact get in touch with them as they will help you so much. Nothing is too much for these people.

Now, where was I on the subject of should I write an e-book to have on this site?

Do write to me with your views on that.

11 Responses to “Living with a permanent Ileostomy”

  1. Sam says:

    Gianna,

    With an ileostomy, the bag sticks on 24/7. You only take it off to change it when the stick gets less stuck (for me about every 5 days). It’s not really that noticeable after you get used to it. For me, a couple months and I wouldn’t think about it too much.

    I empty mine about as often as a pee, unless I eat Chinese or Mexican food, ice cream, or anything that probably would have bothered me before the surgery. Then I may empty more. Having a stomach bug can me 2-3 days of frequent trips to the bathroom as well. I usually have to get up 1-2 times a night to empty but some people can sleep through.

    There’s no real pain after recovery is done. Sometimes the sticky on the bag’s wafer feels like a bandaid peeling but I use a little alcohol and then it will peel off pain-free. Otherwise, no pain.

    Swimming is possible, so I’m told, but I just don’t. I can’t imagine wearing a bathing suit and then having my bag fill up randomly out at the beach. I’m in a cold climate though, so swimming isn’t a big thing around here.

    Wearing fashionable clothes took a while to figure out. I’m really short and most jeans are either too tight or too loose or too low or, you know… but I now shop at Justice (and I’m in my 30s, lol) and it’s like magic. The size 14 is perfect and comfortable and so I wear jeans and the latest shirts and whatnot. No one would know by looking. Really, my immediate family and one or two friends know. :)

    If you need the surgery, you’ll make it work for you.

    There’s a girl who blogs about her ileostomy and actually manages to wear a corset. She’s brave and makes her situation work for her.

  2. Susan Robertson says:

    Hi – I’m a new bearer of an ileostomy – got out of hospital 3 weeks ago. I am really struggling to adjust to this. I am having real problems finding suitable bags which do not leak. Yesterday I had 4 bag changes. The problem is that the skin around my stoma is red raw and ulcerated now, the last thing I want to do is stick anything on it, and when I do, the adhesive doesn’t stick because the skin surface is weepy. Has anyone out there any advice for how to get some air to the skin to allow it heal? I asked my stoma nurse if there was anything she could suggest that could be fitted on or around the stoma to contain the excretion whilst I let air get to the skin. She looked at me as if I was mad and so no. My husband and I are now going to invent something – like a little chute which fits around the stoma and I can just lie without a bag for a few hours. And anyone got any suggestions for finding the bag for me? Currently trying a convex bag from Salts.

    • Jeff says:

      I normally change mine every other day in the shower. Running warm water on it in the shower with soap makes the skin feel better. If it is really irritated, you can take it off and lay in bed. Cover it with a cold and wet towel. Turn your fan on. It seems as though when it’s exposed to cold, it does not dispense waste. I have actually done that and fallen asleep a few hours. After a few hours of airing out, you will feel better. I’ve had mine for over 15 years and I’m only 34 years old. I wear bigger clothes. Sports are difficult for me, especially swimming, but it’s possible if you can get over embarrassment. I swim at my parents house, take off shirt and just deal with it. I have two little girls and they don’t know any different so it’s no big deal. Hang in there.

    • Jeff says:

      Oh. Also, try water resistant tape. I put tape over the part that attaches to my skin. Extra support for the bag. Helps prevent leaks. May irritate your skin at first. I’ve gotten used to it.

  3. Christine LaFrance says:

    thanks for the Justice tip.
    any ideas why when I bend too much y ostomy leaks. or if I lose or gain just 2 lbs?
    Went to 2 diff ostomy coaches, they were no help, they thought they were, but in the end……….

  4. Hi, I’ve had a ileostomy for 33 years. I was in so much pain then that, after much resistance, I was eventually very happy to have the operation, without it I would have died. During this 33 year period I have run several businesses, travelled the world, had two beautiful daughters ( sex was never a problem, my wife was very understanding ), I eat almost anything, play tennis and golf, hillclimb and many other activities. The staff at Aberdeen Royal Hospital were absolutely marvellous and I am totally indebted to them. The surgeon dubbed my first daughter as ” the miracle child “.

    It’s not the end of the world but the beginning of a new one.

    Take heart.

  5. karol says:

    I just have a lady whom son has ileostomy, they leav in horrible environment i mean their house is dump full of mice etc.. Is there any possibility to help them to get a normal place to stay? I mean are there any organisation that could help them to get a decent let say Council Property as hygiene level in there current property is way below the acceptable level but they can not realy afford anything elese for the money they earn. And also is Ileostomy qulified as dissability so her Son could claim any Dissability Support Allowance.
    Many thx for any answers.
    Karol

    • Sharon says:

      They need to report house to their local enviroment agency. If they are private renting, they can also report to the council as unfit. The landlord has a duty of care so mice infestation should be treated. But, mice alone wouldn’t make house dirty or a dump. Claiming other benefits, I am unsure about claiming benefits as I don’t know the health issues etc of the child. Tell your friend to phone her local benefits agency, they would be better equipped to advise her.

  6. Thelma Greer says:

    I am considering an ileostomy after seven years of UC with limited respite. I am an endurance swimmer and I am very concerned about the surgery restricting this, although I realise and I am prepared, to cut down on distance. Is it possible to swim for lets say an hour in a pool? I meet with a Specialist nurse last year who said there was a strap-on devise that kept the bag secure. She was dismissive of my concerns.

  7. Clare Ashton says:

    As someone who’s husband has had an ileostomy at the ripe old age of 44, I find it really hard to try and support him. I have post traumatic stress as my husband’s ileostomy was just one in a list of family related traumatic events, his ileostomy, mum being almost killed 3 days later due to an incompetent motorist ploughing into her, then my husband had a stroke ensuring that the ileostomy was permanent, and to top it all my father died fairly suddenly.

    I feel he catastrophises, is that even a word? A leak at 3 am involves me being turfed out of bed and the sheets washed for a little spot or two. If it was a full blown leak, which has happened, I would understand, but it very rarely is

    Working full time means I need my sleep! He doesn’t work, and can’t get a job, so sometimes I feel he overdwells on it, we haven’t been away since the op, 5 years ago

    Sorry to vent, but are there any other partners who have an ileostomy-wearing other half? it would be of great benefit if I could talk to some people,5 years is a long time to feel lost

  8. Clare Ashton says:

    Re: The problem with the disabled toilet access, there are two practical things to do

    (a) A RADAR key, brilliant invention! All of £3.45
    (b) A card that says” I have an ileostomy and may need access to toilet facilities at any time”. If people look at you funny, shove the card under the nose, that usually works! You can get them from support websites such as the Colostomy Association and the “Ileostomy Association”.

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