high ileostomy output

[MyStar86]

Hi,

I recently had my ileostomy surgery 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 and have to empty again. I’m getting lots of cramps and things just seem to be going through me extremely fast as I’m emptying throughout the day as well. 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 but I’m so cramped up and I’m pain with that. 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

[Gardeningbuff]

Hi. I had that problem when I had a bag. Probably your pain meds slowed it down, Now you’re not tot taking them any more it has speeded everything up. You will probably need medications to slow it down. You will become dehydrated eventually, no matter how much you drink , I did and needed IV fluids .. See your surgeon about this . Luckily I only had the bag 3 months, and was able to have it reversed. Hope this helps.

[MyStar86 in reply to Gardeningbuff]

Thank you they did tell me my kidneys would fail if we left the output as it was because food made no difference it just added fuel and made me go even more so now they have me taking Imodium which does help slow things down it’s just finding the right balance as it helps for a bit then still goes rapid again and it’s killing me having my guts working overtime 24:7 so I’m just hoping that I can find the right combination. Yes you shouldn’t actually drink too much normal liquid when output is so high as it flushes through you, you have to drink rehydration drinks to prevent the dehydration. Thank you for taking the time to reply xx

[Gardeningbuff in reply to MyStar86]

You are very welcome. I hope you can find that balance. Looking back, I think I had to take codeine for a while to slow mine down. Not ideal but , surgeon said it was necessary . Good luck.

[MyStar86 in reply to Gardeningbuff]

I did try that but it just gave me really bad tummy ache 😣 so I’m getting really frustrated as I was up most of the night in pain with it and emptying. I feel so battered today it’s so confusing trying to find a balance and I just feel like it’s me I’m doing something wrong which is very upsetting I got it to be ok for a couple of days then tried without the Imodium and it’s been horrific ever since and I’ve been back taking the Imodium but it’s just so angry making my insides and poor back hurt so much from all the cramping. I wish it would just stabilise so I could enjoy the good part of having the ileostomy vs just suffering the bad elements xx

[Gardeningbuff in reply to MyStar86]

How frustrating for you. Have you been able to ring your surgeons rooms for advice? I was able to speak to a nurse at my surgeons practice that dealt with iliostomy bag problems. Is your bag temporary?