Stoma bag

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Hi not been on here for a while, after being diagnosed with rectal cancer back in July last year iv done chemo and chemo radiotherapy and last week had the op to remove the tumour as it shrunk massiSobly to the point where it was hardly visible :) I have done so well and been upbeat through all of it until I had this stoma bag fitted, luckily they was able to do a reserve 1 so won’t have it forevSob, but I just can’t get used to the idea of having one, the cleaning it is the worse Sob and today it’s so watery and frequent iv had to change it 7xs already!! I’m so emotional about it, I knew I would have to have 1 and I thought I was on with it but now I’m clearly not! Will this get easier?? And if anyone has any information to make this transition easier please do comment thank you 

  • Hi  

    Sorry to hear that you feel you're struggling a bit, and it is a lot to get your head around, but it's very early days for you.

    Is it an ileostomy or colostomy you have?  I have an ileostomy and I remember that it was very watery at the start (and still is occasionally). Sticking to the "white" diet in the early days should help to thicken output up. Mashed potatoes, white bread, pasta, stewed apples, bananas etc. If you don't fancy a full size portion, then little and often works just as well. Crisps are good too.  Also marshmallows or jelly babies.  In my case, I hate both of those but find that Haribo's do the trick - usually just a wee fun size pack is enough. Take care not to get dehydrated. Squash is good (not the "sugar free" stuff though), milk, lucozade sport, or similar, for the electrolytes. Tea is my "go to".

    Speak to your stoma nurse too and tell her how you're feeling. I'm sure that she'll be very supportive.  Remember, you've had major surgery - life changing surgery, which takes a lot to recover from, so please don't be too hard on yourself.  You've done so well to stay upbeat till now, but we all need help on occasion.

    It will get easier, I promise.  And there's lots of help on here (and on the subgroup - Ileostomy, colostomy and stoma support).  

    I hope that things improve.  Any questions - just ask.  Happy to try and help.

    xx

  • Hi  You’ve had a great reply from  As she says please speak to your support nurse. An Ileostomy usually has a pouch/bag that you empty out at the bottom and then leave on for a couple of days so you shouldn’t need to be changing the bag every time unless you’re getting a lot of leaks?

    Theres lots of support, advice and top tips on here so please ask if you’re struggling and we’ll be happy to help?

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • First of all Im so sorry you are feeling this way.if you look at the stoma forum you will see lots of people with help and advice.

    Maybe if you could think of it as having a stoma formed(not a stoma bag fitted,as that sounds like a car having a new partRoflRofl)you could then think if it as just having a part of your body moved about a bit so that you are going to the loo slightly differently than before

    It also helps to think of the 200,000.people in the uk with some sort of stoma who are going about daily life as normal.

    Im not trying to make light of your situation but sometimes a change of mindset might help it did for me.

    All the best going forwards

    Kath

  • Thank you so much for the reply, I wasn’t sure which I had but reading the other comment I’m guessing it’s a ilostemy I had as the bag I have empty’s from the bottom they said to use this bag until stuff hardens then go on 2 other bags.. I am going to ring the nurses today as it still like water but I do a feel abit better about it today probably getting used to it as I had to empty it so many times yesterday lol I think it’s just hit me harder as I was exspect if to be ok with it because I knew for a while that I was going to need one, I’m 37 so I am grateful that it is reversible… thanks for the tips on what to eat I will try them all, is no added sugar ok to drink?? And is it just normal tea?? 

    Thanks again for replying xxx

  • I think it’s a illoestomy I have, I’m not changing it just emptying it every hour coz it’s full of water, soon as I empty it it’s back water again, but I haven’t really had a appetite since the op but will start eating little bits like another has suggested to see if that helps… I’m in general a very laid back person and have taken everything in my stride so these emotions about this stoma has thrown me mentally.. I’m sure il get used to it as it is still early days and I’m also really sore from the op so it’s a mix of everything I think, being in hospital that long also took its toll on my little girl who’s 3 she was so sad the whole time I was in there and it broke my heart she just to little to understand and that also hurt me mentally xxx

  • Hi  

    So, an ileostomy pouch generally needs emptied around 6 times a day. For me, that's usually includes once in the night (but it's still early days for you, and we're all different so don't worry unnecessarily if that's not the case). That maybe sounds a lot but you'll get into a routine of emptying when you go for a wee.

    It really helps if you eat little and often as, if you're digestive system is empty, the bowel still produces mucus and fills with bile which is one of the reasons why the output is runny. It still does its thing even if you've not eaten and food helps to slow things down. Eat things you fancy rather than nothing at all. I had about 5 or 6 snacks a day rather than full meals. Simple things like a chicken sandwich (with mayonnaise), bananas and custard, sometimes a scone with butter or a wee cake. Small portions but higher calories. Milk and yogurt is good too. Once you get your appetite back then gradually ditch some of the sugar and introduce healthier stuff. A retired stoma nurse advised an egg cup full at a time to see how you tolerate certain foods. I'd wait another week or two before being too adventurous though. In my case, 3 years in, I can eat anything (but chew well).

    The reason for not drinking sugar free squash is because some artificial sweeteners have a laxative effect (sorry, can't remember which ones). I drink lemon barley water, Ribena (the full fat one), fresh apple, pineapple or orange juice mixed half and half with water and there's a squash called Rocks which comes in orange or blackcurrant. I just drink normal tea with milk but I think some folks are advised to try decaff as caffeine can stimulate the bowel.

    When you write it down, it all sounds like a right faff, but it isn't really and honestly becomes much easier and very normal.

    I was like you just before the op. My Dad had a colostomy and I was certain that I'd sail through with no issues. 10 days in I was an emotional wreck who wished she'd never agreed to the op. How crazy was that!  

    You can do this - and we're all here to help.

    Xx

  • Yes so I tried a little bit of pasta and cheese last night and a piece of toast this morning and when I just emptied it does seem to be a little bit thicker so thank you for that information I will See no evilep eating little and often.. also my bag seems really puffy all the time is that normal?? I thought it was ment to stay flat to the stomach See no evil I thought it probably had  but now unsure… yes I think it’s the intital thought of it, being through the chemo u don’t really see the effect of the cancer on the outside but this is in my face so tSee no evilspeak… thank you again, I just pray it doesn’t send me in2 a depression xxx

  • The pouch is probably puffy because you're passing wind into it - likely due to an empty stomach. Eat slowly and chew well. Gently push the air out when you empty. You're doing great! 

    Your emotions are perfectly understandable but you're doing all the right things by talking, asking for help and acting on advice. Just keep doing the same. It's a steep learning curve and I think you've coped brilliantly so far.

    Xx