I recently had my ileostomy surgery last on the 26th October and I’ve been out of hospital for 4 days and I’ve been getting very high out put which I have been managing but I’ve been doing all the things I’m told to slow it down with white stuff even having crackers before bed but I’m still up in the night emptying a very full bag then again in the morning where I stay up for an hour before having a lay down and have to empty again. I’m getting lots of cramps and things just seem to be going through me extremely fast. I don’t feel ill for it as I’m keeping my fluids up and as I said eating only the foods I’m told along with supplement drinks to build up as I’m so tiny. I just wondered if anyone else had these problems in the very early days? I’m just worried I’m doing something wrong I did stop all the strong pain meds as soon as I left hospital so I wonder if it’s a side effect to that as it wasn’t this fast in hospital but I don’t get on with strong meds so I’ve just been taking paracetamol however I am concerned about the high output as it’s worrying how full the bag gets in the night and how quickly it fills up I know I’m emptying it over 10+ times which isn’t normal but I don’t know how to slow it down or if I’m doing something wrong.
Any advice and experience of the early recovery stages is it normal to have these cramps I know they are due to the swelling and rapid output but I’m just worried.
Many thanks xx
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MyStar86
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Have you had any dietary advice at all? Ileostomy output is always naturally watery & takes quite a bit of trial & error to adapt too especially in the early days when digestion has changed. Anaesthesia slows the bowel which explains reduced output while in hospital.
Safe foods at this stage of your recovery would mainly be low fibre/low fat - choose white bread, rice, pasta etc, as bland as possible.
In time you’ll get to realise your food transit timing & gauge meal times accordingly but it’s highly likely you’ll still need bathroom visits during the night.
Good luck with the recovery & be kind to yourself x
Thank you so much I was on strong pain meds in hospital and stopped those as soon as I came out so I did think that might add to it. Yes I’ve had the diet advice and I’m sticking to white rice crackers and all low fibre foods plus supplement shakes due to my very low bmi. I don’t mind emptying it in the night it’s just over 10+ times at the moment which I know isn’t normal so I kept worrying I’m doing something wrong. I don’t feel unwell as I’m keeping my fluids up I’m just very crampy with it and do feel a little sicky but it’s just everyone kept saying I should only be emptying it 4 times a day and it should be like porridge which it definitely isn’t. I love the ileostomy so I don’t want to do anything wrong so I was just worried I’m hoping it will just settle they have now suggested Imodium but I said I wanted to try with food first and see if it settles as I don’t want to mess with mt system if that makes sense.
So is this normal at the start for things to be so rapid? Could it be my supplement shakes adding to it? Thank you for being so kind and for making me l feel better I’m just panicking that it’s all my fault xx
Are the shakes ‘milky’ or fruit based? It could well be because you’re diet is so liquid. Tbh, I would try the Imodium as it’s likely to be only temporary while you heal. There are a few things I use to thicken the output: Wine gums, Marshmallows, White toast, well puréed apple sauce, Mashed potato - no milk, coffee or fruit juices these all have a purging effect. I do recommend the toast as it has longer lasting effects.
Being so watery are you managing to avoid leaks? X
Yes I have avoided leaked thankfully as I’ve been using a barrier ring I did have one the first day but the bag change held and i added the barrier ring to the bag as I didn’t have one before and that seemed to work so I did the same when I changed it on Sunday. I did wonder about the shakes it’s just I need them due to my very low weight however I might try a day without them tomorrow and see if that helps. I’ve bright some jelly babies as I read they helped and I hadn’t seen your message but I will have some mash at dinner time as I’ve been having fish and rice but that wasn’t working so I’ll try the mash tonight and hope and pray it helps. I made some stewed apples and puréed them them and that’s yummy so I’ll be adding that to my rice pudding.
I’ll wait till they tell me to use the Imodium before doing it as I am nervous about it but I need to stop the cramps it’s killing me and I know the high water output isn’t good thank you for your advice xx
My stoma nurse gave me Loperamide (maybe spelt wrong!) It slowed mine down and really helped on a night time. Also anything with gelatine in, marshmallows were good. Try to avoid salad and too much leafy veg. I used to have a rehydration drink daily too.
Thank you!! It’s so painful with it being so rapid but I spoke to the stoma nurse and she told me to take an Imodium this morning which I have done so hopefully that will calm it down through the day as I don’t mind it being busy in the morning but not 24:7 as my poor tummy and back feel abused and it’s so confusing this new world not knowing what to have not drinking with food which is hard as I love a cuppa just herbal tea but in this weather it’s hard to drink cold hydration drinks but I have some dioralyte should I need it but my wee is clear and I don’t feel dehydrated I just feel in pain from the vicious nature of my body just wanting not to have anything in it. It didn’t help that the hospital kept me mainly on a liquid supplement diet so now it’s like what the hell is this bloody food and I stopped all the strong pain meds the moment I left hospital so I think my body is going into shock. I’ll just be happy when it stops hurting so much I know it’s such early days so I’m trying to be kind to myself but it’s hard not to stress when it hurts so much and I just feel like it’s my fault but I’ve done everything they told me I don’t have any fibre at all sticking to the white diet definitely no veg or anything that could make it worse just mash potatoes, Rice Krispies, rice pudding, crackers, white bread in tiny quantities as my body never really liked that and trying to limit my fluids so I’m trying my best it just seems to of gone into overdrive since everything wore off from hospital.
Thank you for your advice. Did you suffer in the very early days?xx
Hey, that sounds tough. I’ve just been through a similar journey. The things that caused high output for me was coffee and things with sugar, fizzy drinks, chocolate etc. I was prescribed dimor which really helps as it thickens the bowel content so less should come. I found potatoes and bananas (not too ripe) were the best natural thickeners. The waking up at night thing I think is sadly a new normal, once maybe twice.
How long have you had your ileostomy? Do you still find you have a lot of tummy pain? I’m not even a week out of hospital but I keep having panic attacks that I shouldn’t be in so much pain as the surgery has taken away my old issues which I’m forever grateful for but I do feel like I’ve been punched in the stomach and this cramping is horrific.
The Imodium worked today as I’ve been having high output since I left hospital so nearly a week and it was getting a bit dangerous I have had mash potatoes and all the things to help it which has thickened it up so I’ve only emptied it 5x today which is totally different to what I was going through I also took a codeine in the afternoon as I couldn’t cope with the pain as I stopped all the pain meds the hospital gave me as soon as I left and just used paracetamol but today it just broke me as I had hoped with a slower output I wouldn’t be in such pain but the team did reassure me they it’s massive surgery so I will be in pain it’s normal but it’s still so scary. I’ll just take each day as it comes and I don’t mind getting it in the night as I always did pre surgery but now I just set an alarm for 3am so it doesn’t explode being so full which seems to work xx
Hey sorry to hear that you’re in pain that sounds tough. To be honest pain and cramps haven’t been an issue for me luckily so I’m not sure I can advise on that. I had pain from the operation sites but not cramping. I had mine for around 7 months but literally writing this from a post reversal hospital bed.
Good luck for your surgery! Even with the pain I’m in there is no way I would go back to pre surgery so I hope you feel better post surgery as that’s soon having more surgery after the ileostomy done. Take care and I hope you have a good recovery.
I guess we are all different as my team reassured me it was normal so I won’t panic that I’m different to you.
I’ve had a high output Ileostomy from the start 10 years ago. I drink 8 sachets of dioralyte each day to replace the nutrients I’m losing but nothing much thickens it even mash and other things on list.
I use an overflow bag connected to my stoma bag at night and don’t need to get up. In time you’ll adapt to what suits you. Just take it slowly 🤞
Wow really do you have all of your small intestines left as I know the less you have the faster the transit time but some of us it just goes rapidly. I set alarms in the night to wake me up to empty it which seems to work but during the day it’s very tricky and does put me off eating when it’s so crampy. Do you get a lot of pain with it being so fast through your system? I know I’m in the very early days but it’s so painful it keeps making me panic as it’s solved my old problems but now I am doubled over with my guts working overtime as it just seems to vicious but a lot of The pain is near the stoma site which is still swollen so I’m hoping that will ease in time. How long did it take you to settle down and feel more normal post surgery? Thank you for sharing your experience xx
I have to say I don’t have much cramping like you’re having I do get a bit of period type cramping though
I spent the first two months after the op in hospital as my body wasn’t absorbing any nutrients and I went down to 5stone in weight. I was very dopey so can’t really be sure of pain levels. I’ve all my intestines bar the bits that were removed for op. My problem was slow motility of food and I kept getting blockages!
I’m the end they decided I would have to have bags of fluid and nutrients via a Hickman line.
Since then I’ve been much better although it’s a nuisance but at least I can go out and about.
I would suggest you wear a hernia belt to support your tum. No one told me and now I have a hernia the belt wraps over and gives you support. You can wear it as loose or tight as suits you. Check with your nurse first.
Even though I have had loads of problems I wouldn’t go back to not having a stoma. Give yourself time to recover slowly. X
You might not of had the same issue as me if you were on a liquid diet as I’m having trouble eating food I was fine on just liquids in hospital but when food was added my body went mad. I wanted to stay on the liquids but they said I couldn’t due to the high output as it’s the food that slows it down 😞 so at the moment I’m just having tiny amounts and having some of my shakes as well because I find it much easier and less painful that way. They have put me on Imodium to slow it down in the day which did help yesterday so I’m doing the same today but I would prefer to stick to liquids but will see how things go as it’s only a week today I left hospital and like you I was very dosed up in hospital so the pain and issues were a lot less but I see the stoma nurse on Friday to chat to her about it all as they have keep keeping tabs on me every day since I left hospital so I have the support I just hope things settle down in time but I struggled with digestion pre surgery so still having my small intestines means I’m left with those issues but I think it will calm down once the healing and s swelling goes down.
I get worried about those belts as I don’t like squashing the bag when it fills up a lot that makes it very tricky but when I go back to my longer walks I will wear one even just the support band as I do want to protect it I just wouldn’t want ro to be wear one in the house when I’m sitting or resting due to the bath filling up but I’m being sensible treating the recovery like my hysterectomy so I’m not doing anything too much baby steps no lifting etc or crazy exercising just a couple of little things walks down the road at the moment and the odd 5 mins on the treadmill when my back starts to hurt as my body likes to move and isn’t user to so much resting but I have a lot to recover from and years of sleep to catch up on xx
I was put on the fluids to replace what i was losing with my high output I didn’t have it before.
I pretty much eat what I like but don’t have much of an appetite.
The belts I use are one long strip with Velcro so I can have them as tight or loose as I’m comfortable with. That way your bag can still fill up as it needs!
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