How do I limit my 'output' following an ilestomy

Hi Jennylou, 

I also have an ileostomy after surgery on 1 April, I have also had a high output which was very liquid and had a couple of leaks. I am eating most things apart from salad, sweetcorn, mushrooms, nuts and a lot of fruit. I have had strawberries today, chewed them very well and they were delicious! 

Do you eat a lot of veg like broccoli and cauliflower as I think these can cause the gas, as well as obvious things like onions. I had a glass of lime and soda today and there was a lot of gas after this as it was fizzy. I have found it is just trial and error with myself but if I know roughly what has caused the change I am ok with that and I try not to stress too much as I have still got to live and I enjoy my food so much to cut out everything.

Mine makes some very interesting noises and gurgles but I think that what happens unfortunately, I think it would be more embarrassing in public.

My stoma nurse said to eat jelly babies and marshmallows to thicken the output and stewed apple. I am diabetic so only have a couple but it does work. Also I have been prescribed loperamide which helps too.

I also empty my bag around 10 times but I don't like the feeling when it is full so as I am just at home it's no problem to empty it more often. I get up at least twice in the night also. I do drink an awful lot of water and squash so this is probably why. I bought some of those puppy training pads ..(I am sure there must be a human equivalent) .... just slipped one in between the sheet and the mattress protector so If i do have a leak in the night, its just the sheet to change. I also have a soft towel which I lay on. I find I sleep much better without the worry

My leaks seem to have settled down now, I went back to basics and with help from Ian on here and my stoma nurse have managed to clear up the sore patches and get a good firm stick with the wafer. One of the best bits advice I thought was to put the new bag in your armpit next to your skin while you are removing the bag and cleaning up to soften the seal, it did seem to stick more when it was warm, and I make sure my skin in perfectly dry and free from powder.

It certainly is a big change isn't it and I really don't want it to rule my life. It must be very hard when you have a lot of leaks as you are finding at the moment and lose confidence, I really hope you can sort out all your problems. I am not sure whether your stoma will be permanent, mine is temporary but I will have it for a good few months while I m going through chemo. I would rather not have it but the alternative was far worse! .

Take care and keep safe x

Hi Jennylou and Phoebe21,

If it is any comfort to you, as your posts were to me, I am another Ileostomy wearer who suffers in exactly the same way.  High output, emptying between 8-10 times a day and always once or twice at night, I suffer leaks as the bags sometimes simply can’t cope with the liquid nature of the output.  It was suggested to me recently that I make the hole smaller so I have to push the actual stoma through it so there is no space at all for the output to leak through.  My bags are cut to size just now but I will discuss this with my stoma nurse.  
Mine is now permanent, having had one reversed in 2017.   I too put a leak pad under my sheet and lie on a small towel every night.  
Do either of you take Imodium tablets?  I’m supposed to take 8, 4 x daily!!!! It sometimes thicken things up but sometimes it doesn’t.  

I eat normally except for the things you already mentioned.  But often what I eat just goes straight into the bag!! My weight hovers around 49kg and I am working hard to put weight on but if it doesn’t stay in my digestive system long enough then no amount of cream or chocolate cake will work.....  It’s very hard to balance it all.  We need to drink enough to be hydrated but not enough that it goes straight into the bag, causes leaks and lack of absorption.  So tricky. 

It seems to be trial and error as everyone is different.  My ethos is to enjoy what we can eat, be mindful of the things that cause problems and to get professional advice when needed.   I’m with you both.  

Hi Daffers54

My main problem is very sore skin around the stoma. I had managed to clear up all the sore patches with a lot of  really helpful advice from a gentleman called Ian on here and my stoma nurses, but last week I had an infection and was on antibiotics for a week which changed my output. I had a couple of episodes of pancaking and the output sat on my skin overnight which has caused a bad flare up again.

I have got lopamide tablets which are the same as imodium, I do take them when the output is very liquid, but not everyday.

I spoke with the stoma nurses and send some photo's in to them, and they were brilliant and one of the nurses has said she will drop off some additional products for me on her way home from work today so I have them for the weekend.

How about that for service!

On a plus note, I have eaten a lovely salad, peeled and de-seeded  the tomato's cucumber and pepper, but added some well chopped olives, rocket and an advocado. It was delicious and I chewed and chewed it so well. It is great to eat coloufrul and textured food again!

Have you lost a lot of weight or have you always been so light? I was slightly overweight BM of 27 before my operation. I lost 2 stone while I was in hospital but have put on a stone since I came out on 10 April, I think taking it easy and sitting around has helped. My weight now is stable and in a normal range which is great. I am happy to maintain this but as I have started chemotheraphy (2 cycles down.. Yay!) I expect I will lose a bit as time goes on.

It is hard to be positive all the time when you have leaks and sleep is disturbed. Everyone says sleep when you can .. but when I nap in the day I am awake until the early hours so I try not to do this too much.

I am sure we will all get there, it's a difficult journey but I try to keep smiling 

Take care and keep safe x

dont striks a match when emptying your bag methane BANG