Help Needed on Ileostomy, for Mum 71

Mum had an ileostomy 2 weeks ago, has now been discharged from hospital but is having trouble getting things to thicken up if you know what I mean. She had a good day yesterday and only had to empty the bag 3 times, but so far since last night it has gone back to being all fluid.

Any help on diet salt etc would be greatly appreciated, she had read the book given by the stoma nurse and has tried marshmallows, jelly bablies, bannas etc.

Thanks

Sue

3 Replies

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  • Hi Sue

    I'm so glad your Mum is home, I'm sure she feels much better for it.

    I also have a relatively new ileostomy.

    Apologies for the below to anyone who would rather not hear about stoma outputs! Stop reading now!

    The ileostomy kicks out the food in your stomach through the day and night, but obviously in the morning there isn't any food in there from the night, so it just kicks out stomach fluid, so mine is usually more liquid in the morning until a couple of hours or so after I've eaten.

    I usually have a non- fibre cereal and a banana, which I find helps, then mid morning white toast with peanut butter.

    I don't know whether jelly babies help, but it's quite a nice treat so I have them! Other things are anything with gelatine or arrowroot, so arrowroot biscuits, then for meals potatoes, pasta or white rice, with whatever else. The ileostomy association say you can eat what you like, but I found it better to sort out the consistancy then introduce fruit and veg slowly, and avoid the foods that are supposed to cause blockages, although apparently blockages are rarely caused by food.

    For salt, I was advised to eat crisps or pretzels, as things with the salt on the outside, and I find crackers and cheese a good evening snack.

    I usually have to empty about 2 hourly, but often more directly after meals. What I would love to crack, if anyone has any advice, is to get through the night without having to empty it, as I am usually up once or twice- it's like having a new baby.

    I hope this is of some help.

    Coloplast do some really good booklets covering what to expect after coming home and after 3, 6 and 12 months. I found them really practical and encouraging, although it's worth remembering that a lot of people have had ileostomies because of bowel problems which have affected their diets for years and their lives are improved by it.

    Warmest wishes to you both.

    Sue

    x

  • Hi Sue

    I've had my ileostomy for about 18 months now and it still behaves erratically most of the time - that's the nature of it unfortunately. I take immodium instants which I get on prescription to try and slow down the output. Also a great thing are Absorbagel Sachets which you get from your supplier. Pop one or two in the bag and it turns the liquid into crystals which then makes it much easier to deal with.

    The other Sue has answered exactly as I would have done, so I won't go all over it again! I joined the ileostomy association and look into their website nearly every day - it's where I've got all my hints and tips from and no question is too silly to ask. You can also send for free samples for all sorts of products to try.

    And the other Sue, I'm sorry to say I'm still usually up a couple of times a night which I agree is a real pain in the neck!

    Best of luck to you both.

    Cathy xx

  • Hi SusanC and other ladies above

    I don't have oc but have had an ileostomy for 41 years due to ulcerative colitis with pre-cancerous cells. Eating little and often is key and trying to identify what foods cause problems. I find eggs, fish, onions, curries etc (in fact all highly "fragrant" foods) cause lots of gas and fluidity. (Sorry if this is too much information!)

    Taking loperamide 20/30mins before a meal is essential so that it starts to work before the food gets into your intestines. I usually take 1 or 2 at night to help with the " night visits". I was told by a doctor that eating jelly babies, wine gums, marshmallows etc can help and taste good! My stoma nurse recently recommended a probiotic drinking yoghurt - up to 5 times a day! A bit excessive I think but worth a try to keep all the good bacteria doing their thing.

    Absorbalgel sachets are a great help,as Cathy says, and as they go into your appliance, obviously don't affect you internally as taking anything by mouth is likely to. Presumably your Mum is on all sorts of medication as well so any of that could be causing problems and she should ask her stoma nurse for help. I know it sounds very glib but stress is another factor and understandably she, and you & the family, are all suffering. Would she be amenable to listening to relaxation tapes or just some soothing music. I'm not New Age but I do believe there are all sorts of what used to be called "hippie" therapies to try.

    This has been a very long reply and if you or your Mum would like to talk more directly with me, my e-mail is jkuca@talktalk.net

    At 65 and having had an ileostomy for all this time, you might think I've seen it all, but believe me, it still surprises me at times. Several people believe in giving their stoma a name so that they can "communicate" with it better. The Native Americans believe that by giving something a name it has power over you. This little bit of intestine on my stomach is not going to have power over me !

    Keep in touch with all of us on this site Susan and good luck to your Mum with her little b-----r!

    Jennie Kuca

    Regional Ovarian Cancer Coordinator

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