High output ileostomy

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Just wondering what other people's experiences are in regard to high output ileostomy.

I had my surgery 18 months ago and after initial problems it seemed to settle down after about 2 months. Then, fo reasons I have not been able to understand, i became dehydrated again and nearly ended up in hospital. I avoided this by taking 1l of St Mark's solution every day. Since then my output has been very watery or 'soupy' - definitely not 'porridgey'. It has been like this ever since and I empty my bag about 9 or 10 times in 24 hours.  I can manage the daytime frequency but I am up 2-3 times every night and I find the broken nights  really exhausting.

I have been referred to a gastroenterologist and have had a whole battery of tests done and am awaiting a follow up to hear the results of this. On the meantime, the consultant wrote to me saying the blood tests I had done were perfect and that the St Mark's solution seems to be working. There are still other results to come, but I worry that all that will come out of it is that I should avoid getting dehydrated and just get on with it otherwise.

I'd like to be prepared for the appointment and know about any other treatment or solutions to this problem. Like I say, it's mostly the night times that I find so problematic and impact the most on my quality of life.

Any suggestions?

Thanks all.

Osboz

  • Hi Ozboz

    Its like you’re caught in a rock and hard place. I keep hydrated by drinking isotonic drinks. They’re not the expensive type. Lots sea salt on my meals and I take sugar.
    This seems to keep things okay.

    I did have an issue with watery output  and found a dry cracker about ten at night did the trick. Also my meals finished by six. That way I have a pretty good nights sleep. I no longer am up too early 

    Hope things settle 

    Ann
     ‍Art

  • Can I just ask Artsie,how often you have the isotonic drinks or is it a case of "how long is a piece of string" and depends on circumstances?

    Thanks kath

  • Hi. I buy 59p sports type from local shops and drink at least one a day and two to three pints of Vimto. I like to keep a glass of water in the fridge then add a little Vimto I have it weak. I was told to up my sugar and salt. Which I have and enjoy it. My dentist said to do what I’ve got to do. 
    Trouble is Kath my salt and sugar are high and I like it like that now when I’m reversed!
    . Ha ha well that’ll be interesting 

    Ann
     ‍Art

  • Thanks.will get some of the sports drinks.I do drink a lot of orange squash but the low sugar one.maybe a change to the normal one might help.

    Hopefully the cooler weather also.

    I hadnt thought of your poor taste buds after your reversal.

    Kath

  • Yes Kath. I’m now addicted to sugar natural or not and sea salt. So my food will be very bland. 

    I was told after my op to buy full sugar Ribena I nearly fell out of bed surprisingly I adjusted to the high sugar and salt easily. Think I may find giving it up much harder.
    Be a grumpy withdrawal head for a whileNiw change there then Grin 

    Ann
     ‍Art

  • Thanks for the advice, Artsie. I do find that my output is often watery at night (though not only then). We have our evening meal around 7 and I don't eat anything else before bed. I think I'll try your cracker idea to see if that helps.

    I have also tried a food diary and it was clear that it didn't seem to make much difference what I ate. I could eat the same thing three days running for lunch or breakfast and have different consistency output each day! Now I just eat what I want, so long as I keep hydrated.

    My addiction is to lime cordial to make the St Mark's solution palatable. I go through 2 bottles a week. I haven't mentioned it to the dentist yet!

    Thanks for taking the time to reply Kissing smiling eyes

  • Ha ha. I told my dentist I’m now high sugar and salt and he just said you have to eat what you need. 
    I didn’t tell him about the sweets I was eating. Smiley


    Ann
     ‍Art

  • hi Ozboz, I second what Artsie has said above. When I had an illiostomy  I did similar which helped a lot.

    Kath
    "don't think about tomorrow"

  • Hi Osboz, I am new to this community but had ileostomy for several years.

    When I get very tired I sometimes put it down to dehydration.

    Sometimes I get up every two or three hours at night, but often manage to get four hours at a stretch.

    I did try using an external catheter but now manage without at night.

    I had been taking four to six sachets of Dioralyte per day but there are supply problems now so am trying other options like St. Mark's Solution.

    Too much salt and sugar is not good, Glucose is better to take than sugar (which is sucrose), but not easy to find.