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02-27-2013, 11:44 AM   #1
Hainesyboy
 
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Newbie Stoma owner!!

Hi All,

After reading literally hundreds of forums etc I've joined this one!

I've just under gone ileostomy surgery after suffering from Crohns for over 25 years. After a bad resection experience back in May 12 I pretty much asked for the stoma.

So that was 2 weeks ago and I'm coming to terms with everything that comes with this kind of surgery.

My main question is, and its a question I've seen loads of answers too is that of slowing output of my stoma. I've never been so thirsty! I feel borderline dehydrated the whole time and its getting me down!

I'm drinking about 4 litres a day with about 3.5 litres being emptied down the loo as little as 10mins after I drink.

I'm on Imodium which isn't having any affect, banana and peanut butter do slow things a bit but I was wondering if there were any Miracles out there that will get me hydrated. I'm also wondering if this will slow down when my surgery heals more!

My dietician just tells me to drink sips of everything but I'm so thirsty this is so difficult, so.I.end up necking my drinks which then go straight through me.

I'm drinking powerade, lucozade sport, diaralyte, fruit juices and diluted cordials.

Any help would be appreciated as even though I'm the actual taste of the drinks I'm drinking there's no fun in tipping them straight down the loo straight after I've had them.

Would really welcome some help.

Many thanks,


Paul
02-27-2013, 12:02 PM   #2
Kinsey
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My mother always told me rice will slow things down too.
02-27-2013, 12:20 PM   #3
2thFairy
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Welcome to the forum Hainesyboy and to you too, Kinsey! And congratulations on your new stoma!!

Things will slow down, but it will take some time. Bread, pasta, crisps, baked potato..yes, rice! , and...wait for it...CHEESECAKE.. can help thicken things up. Since your stoma is brand spanking new, everything is running through you fast and will for awhile.

Some people get good results on high doses of Immodium. It doesn't work for me, but Lomotil helped. Lomotil in high doses can have some nasty side effects, so I didn't take it very long. You might even try psyllium husks, but definitely consult your doctor first.

I have benefitted the most from time (months) and food to thicken things up and slow things down. Everyone is different, so I know there will be some more really good suggestions to follow from other ostomates.
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02-27-2013, 12:26 PM   #4
Kinsey
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When I take my son on Monday to hospital, I'm going to bring him cheesecake! Thanks!
02-27-2013, 02:35 PM   #5
Terriernut
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Hainesyboy and Kinsey!

New stomas are particularly active unfortunately. Ileo's the more so. You have the definitive list from Toothy there, so eat up all those things and it should help. I say help, because new stomas don't like to be slowed down at all. But if it helps even just a little it's WORTH it! Oh, marshmallows help too!

It can take quite awhile for the little buggers to stabilize, so try to be patient. It's like having a new baby in the house (which is exactly what new stomas are) so expect loud squawking, much 'output' and general mayhem to begin with, but they do calm down eventually. Thank goodness for that! Give them about 6 weeks of pure naughtiness. And shrinking too. After that they settle down.
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02-27-2013, 02:40 PM   #6
Hainesyboy
 
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Thanks guys for your responses. I can't wait until the little blighter slows down a bit! I'm guessing that the slowing down of the stoma coincides with the bowel starting to absorb more liquid from my diet?

I was kinda hoping i'd already had that happen as I had a completion colectomy with anastomosis back.in May but it seems I'm startipng back from square one again!

Thanks again for your information, I can feel many more questions coming on!
Paul
02-27-2013, 03:37 PM   #7
Misty-Eyed
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I hope your recovery is going well Paul. Have you tried eating crisps? It could be that you're still not having enough salt in your diet and crisps really thicken things up for me!

How many imodium are you taking per day?
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02-27-2013, 04:20 PM   #8
Dukeis
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I hope your recovery is going well Paul. Have you tried eating crisps? It could be that you're still not having enough salt in your diet and crisps really thicken things up for me!

How many imodium are you taking per day?

Michelle,
Are crisps what we call saltine crackers here in the states?
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02-27-2013, 04:29 PM   #9
2thFairy
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Potato chips
02-27-2013, 04:45 PM   #10
Misty-Eyed
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2nd Fair is correct! No idea what saltine crackers are lol.
02-27-2013, 04:50 PM   #11
2thFairy
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Similar to a cream cracker, perhaps. Misty, our resident former yankee, would know.
02-27-2013, 06:50 PM   #12
Dukeis
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Good, I can handle Potato chips. I call saltine crackers cardboard with salt on them.
02-28-2013, 03:10 AM   #13
Terriernut
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Michelle, I have a box of saltines here if you want to try one. They are really good with soups if you've no bread, and they are good for crushing and adding to stuffing too. They are very soothing if you have nausea and vomiting. Women with morning sickness use them alot. (I got them to help with my nausea)

And yes my Overlord...I'd prefer crisps (potato chips) too!
02-28-2013, 04:22 AM   #14
annawato
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Any soluble fibre will help thicken output. Google soluble fibre and see what takes your fancy, keeping in mind that some things are not good when a stoma is new.
I've always had huge liquid output, like water, even with taking 16 loperamide a day. My IBD specialist recently prescribed amitriptyline and so far, touch wood, it has really slowed my output at night. I don't take it during the day as it makes you sleepy but it is helping to stop leaks at night due to high out put. Generally I just put up with the liquid output during the day, makiing sure I keep up my sodium and other electrolyte levels.
At the top of the stoma subforum page there is a thread titled "stoma support - good advice...." that has a post about liquid output that may be helpful for you. Porridge is a good soluble fibre, potato chips a must, rice, rice crackers - all have at least turned the liquid to gravy consistency. Oh yes, apples are really good too. You may need to remove the skins at first though, particularly if you could be prone to blockages.
Time does help as the bowel adapts and absorbs more liquid. Hope you find something here that helps.
Let me know if you do.
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you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
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02-28-2013, 06:16 AM   #15
2thFairy
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Oooo Anna..I forgot about apples. I ate a lot of applesauce when Sideshow Bob was brand new. It helped a lot!
02-28-2013, 07:04 AM   #16
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We had cannelloni tonight. I find that all that ricotta definitely helps to thicken things up. It's always great to have something other than water sloshing around in my bag.
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03-01-2013, 05:07 AM   #17
annawato
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I'm eating lots of rice crackers at the moment. They're helping. And its got nothing to do with how yummy they are.
Yes apples are excellent. I have one before bed every night.
03-01-2013, 04:02 PM   #18
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Hi guys,

Thanks for your reply.

Have just come out of hospital due to severe dehydration!

Very low in magnesium apparently, after a day or two on IV fluids and Magnesium infusion. Now being restricted to 1 litre of St Marks solution and 1 litre of any liquid. I'm going to find this difficult as im still so thirsty but apparently this diet should slow my output and keep my sodium and electrolyte levels in check.

Didn't realise this stoma game was gonna be so tough, I thought the physicality of having one was the greatest hurdle, not the diet afterwards!

Was feeling sooooo scared and anxious in hospital, which is not like me at all. Turns out magnesium depletion causes severe anxiety and panic attacks! I suppose at least I'm not turning into a complete wimp!

Anyone else suffer from any of the above when they first had their stoma?

Many thanks,

Paul
03-01-2013, 04:46 PM   #19
Terriernut
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Paul, quite a few of the members here have wound up in hospital because of dehydration issues. But as far as I know, they only do it once! It seems to be something medical staff don't stress enough. With an ileostomy, you have NOTHING to absorb liquids. That is the colons job. Therefore you have a very good chance of dehydrating quickly.

I'm so sorry you went through this!
03-01-2013, 05:53 PM   #20
Hainesyboy
 
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Terriernut I'm hoping that I can cut down my drinking and stick to this regime! Annawato, I have some amitriptyline, I'll try it out again with the stoma. I only have it as it helps me sleep and haven't had it since my stoma. I have been told it slows the brains message (and vice versa) to / from the intestine so your experience with it slowing things down makes sense. I've taken some tonight so ill see how I get on.

Plus I'm on this St Marks / Diaralyte regime so hopefully somewhere down the line things will slow down. Even if I am drinking a bit more than the advised 2 litres a day. My sense tells me if I have more St Marks / Diaralyte than suggested, even if things do still go fast through my system, as what I'm drinking is full of sodium and electrolytes then its better than just drinking juices or water? I'm hoping I'm right!

Thanks again for your suggestions.
03-02-2013, 02:20 AM   #21
Terriernut
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I hear the St Marks is very good at hydration, and very difficult to 'stomach' because of the taste, but that it works. Haven't tried it myself TBH.

As far as only drinking 2 litres....I would ring your stoma nurse for a quick check to see what she says as well. I know she's not a Dr, but they have LOADS of experience with ileo's and I've found that they know alot more about what happens 'on the ground' so to speak. Especially for a new stoma.
03-02-2013, 10:32 AM   #22
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Doesn't taste too bad tbh. It was my Stoma nurse who has put me on the St Marks regime. My output has been pretty low this morning but its now 3:30 and I've already had 1.5 litres of fluid. 500ml left to drink, perhaps I'll have to go to bed early!!

Being on a high sodium, but low fluid diet is really counter active and this no drinking with meals thing is hardwork too!

Haven't one of you old Skool Stoma guys got any magic potions for me!!

Thanks again for your comments, it's really helpful for new to this world people like me.

Paul
03-02-2013, 03:41 PM   #23
2thFairy
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I have no other suggestions. I did have issues with dehydration, but they were early on while still hospitalized. They just hooked me back up to the IV. I did have to have potassium and magnesium added in at that time.

Since being home, however, I have had a few times of knowing I was about to have a problem and I drank Gatorade and ate a lot of salty crisps. I drink about 4 liters of water of day.
03-03-2013, 08:25 AM   #24
annawato
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I was put onto the St Marks solution with my first stoma. I was in hospital for 2 months after getting it due too such a high output. 3+ litres a day. They tried everything and in the end let me go home cos there was nothing else they could do. I did the St Marks for a couple of weeks but couldn't stomach it and missed my cups of tea. I managed it by having loads of salt in my diet plus electrolyte drinks. And sipping water all day. Sipping a litre or two over the day is better than having lots of glasses of water apparently.
This stoma is also high output. I'm sure I get dehydrated and I hate to think what my electroltes are like. I often get very dizzy when I stand up but it usually passes after about 10 mins and I take that as a sign to have something to drink. I also take calcium, vitamin d, a multivitamin and when I think i need it potassium and magnesium. I think I've just got to know what my body needs. Oh yes cramps are a good indication that electrolytes are out of whack so I take some potassium and magnesium etc then. Tomato juice is something I find helpful cos it is a salty drink - I actually add salt and worcestershire sauce. ( And vodka on the occasional night. )
I have found my output has slowed a bit now - still like water but not such a great quantity now - maybe 2 litres? Not sure if its the bowel adapting or the amitriptyline.
Let me know how you get on with the amitriptyline.
Its hard having to drink salty drinks and limit others cos the salty drinks make you thirsty. It is the proper way you should go but I just couldn't do it. Probably why I'm always so achey and tired.
ps sorry for the essay - had lots to say. Hope you get it all sorted soon. Let me know how you get on with it all. having or rather being in the same situation I have a lot of empathy for you. Its hard enough having to deal with a stoma wihtout fluid and diet problems on top of it.
anna
03-04-2013, 03:33 AM   #25
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Thanks Anna. Well I've been back on my Amitriptyline for the last 3 nights and on the St Marks / Diarolyte since Friday. Things have dramicially calmed down! I'm not feeling anywhere as thirsty and the dehydration side effect of dizziness, muscle cramps, weakness, dry mouth have all but gone. I'm not sticking to the regime strictly as I can purely drink only 2 litres a day but I'm drinking the St Marks recipe plus probably another 2 litres of other fluids. I'm still finding if I drink fluid quickly or in any great volume it flows through me quickly but I can deal with that when I makes the choice to neck a lovely thirst quenching drink. And as it settles straight back down when I sip fluids then I'll make that choice if I want to! You guys have certainly helped and pointed out that sometimes, regardless of what the experts say, if you feel like something then it's our choice to deal with the consequences now and again.

Thanks again for all your suggestions, I'm so relieved that finally things are going a lot better for me (like you said they would).

I had a lovely Roast chicken dinner yesterday, by far the largest meal I've had in months with Absoliteky no negative effects. I'm really starting to feel a lot more positive about my stoma. Before the op, I couldn't have eaten half of that meal and would've been in agony 3 hours after it and restricted to places with a decent toilet. Hopefully this is then end of feelings like that.

Best regards - Paul
03-04-2013, 07:09 AM   #26
annawato
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Thats so good to hear things are settling down. I wonder if its the amitriptyline or the st Marks. Either way, its good. Like you said its sometimes worth dealing with the consequences to have what we want. We have to feed the soul as well.
I've decided I'd rather put up with volume during the day and be able to drink/eat what I want, so long as I dont have to have the volume at night. It does mean having to change the bag and flange everyday but its worth it.
Roast Chicken, Yum. I haven't had that for ages. I must put it on the menu again.
I think one of the good things about having such a liquid output is that we are probably not as prone to blockages as those with thick output (though don't quote me on that). I find so long as I don't have anything too fibrous, like celery or oranges or corn or green beans, I can eat most things. None of those things caused a blockage for me but they did cause leakages by forming a big ball that pushed the flange up and off when they passed thru the stoma. Or thats what I think happens anyway. Its all trial and error.
all the best,
anna
04-03-2013, 06:12 AM   #27
sanni
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What exactly is this St Marks solution? I mean what is the content of it? I am on an ORS solution with 3g natrium citrate, 3g natrium cloride, about 40g sugar (comming from the juice i mix my mixture in) and now up to 2.5g potassium per 1 liter of liquid. I drink 2 liters of this per day. In addition I have 3*2dl of a nutrition supliment and about 1-1.5 liters of other liquids. Just so you have something to compare your hydration plan with.

For me this has been working ok and it got me off iv-hydration 3 years ago. I do have large output too with emptying my 500ml bag over 15 times a day (ofc its not always full).

If you feel thirsty all the time maybe try sucking on an icecube. For me when i get a huge thirs spell and feel like gulping down a liter of water I take a small glass of it and drink it in really smaal sips or just take a sip and try kep it in my mouth for a while. Strangly it seems to help. I think an icecube would work too.. just never have any .. should probably make some.

Hope you feel better.
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04-05-2013, 11:11 AM   #28
katiesue1506
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I always had to drink an hour or so before my meals and refrain from drink anything with or after meals to retain the food. That, imodium, fiber powder, and bananas are what helped me through.
04-05-2013, 01:49 PM   #29
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for hydration I say coconut water, it is natures gatorade. full of naturally occuring electrolytes, super hydrating and nourishing,refresing tropical taste
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04-06-2013, 01:58 AM   #30
annawato
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Sanni, I can't remember the exact recipe for St Marks solution but your drink sounds very similar. It is a mixture of water, salt and glucose. Actually just found it so here it is:

You will need:
6 heaped 5ml teaspoons glucose
1 level 5ml teaspoon salt
Half heaped 2.5ml teaspoon sodium bicarbonate
Stir all ingredients into 1litre of water and chill overnight. Take out and enjoy all day!

I found the recipe at this site which looks quite helpful for those of us with high output.
http://www.stmarksfoundation.org/upl...vice%20HOS.pdf
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