How much water should I be drinking?

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80sChick
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   Posted 8/9/2011 8:01 PM (GMT -6)   
Shocker, just had some bloodwork done and it showed that my calcium and something else were elevated, which basically means I'm dehydrated. I feel like I'm always aware that I need to drink more, but the problem is that I have something wrong with me (seen 3 urologists and they can't figure out what) so I have to pee ALL THE TIME, like seriously even with drinking a small amount I have to pee minimum every two hours. When I drink like 8 oz of water at one time, I have to pee like 3 times within an hour.  So in order to live without being right next to a bathroom, I have to be careful not to drink TOO much.
 
Obviously because of the ostomy that really presents a problem. My question is this: how much should I be drinking with an ostomy? I'd like a number to try to get to, so I can stop this dehydration but still be able to function. I am a teacher so there are many times I have to go at LEAST 2 hours without going to the bathroom. This is so frustrating. My dr wants to re-do this blood test in a few weeks to check my hydration.
 
Thanks, guys.

esoR
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   Posted 8/9/2011 8:32 PM (GMT -6)   
80's wow!

And you also have an ileostomy right? Which means that your urine output would normally be even less due to losing liquid in your effluent.

This is a puzzle. Hope someone else can come along and help. Rosemary

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/9/2011 8:40 PM (GMT -6)   
Oh, god. You're right, Rosemary. I never thought about that. Yeah, I'm really REALLY frustrated about it. I've had two surgeries to try to fix the problem (they thought the muscles of my bladder neck were too tight, as my symptoms closely mimic a man with a prostate problem), but it was to no avail.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 8/10/2011 4:47 AM (GMT -6)   

Do you drink isotonic drinks/drinks with a decent level of salt in it?! I too suffer with dehydration - not through weeing a lot like you but simply cos of the fluid going straight through to my bag. I've been told over and over to have at least 500ml of isotonic drinks a day and when my output is very high to have mostly isotonic only.

Isotonic drinks have the same concentration as your blood. You can make them up yourself or buy the soft sports drinks. A lot of shops do their own make which are much cheaper than the brands.

What is your ileo output like?!

If you want more info let me know :-)


24 y/o female from UK dx with UC (Proctitis) Jan 08. Never fully been in remission, resistant to nearly all meds tried. Also dx with IBS. Proctocolectomy+pouch surgery with temp loop ileostomy 9th April 11.
Currently taking daily:Tramadol, 20mg MSR (slow-release Morphine), 40mg Loperamide, Cyclizine, 60mg Seroxat (anti-anxiety), Multivitamins+Iron

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 8/10/2011 6:24 AM (GMT -6)   
80schick, my friend just had a blood test come back with too much calcium and her doctor told her that high calcium almost ALWAYS indicates a thyroid problem. Google high calcium. Did she do a thorough thyroid blood test?
End ileostomy due to colonic inertia and pelvic floor dysfunction.

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/10/2011 6:26 AM (GMT -6)   
I really only drink regular water and coconut water (love it!! but it's so expensive). Is like Powerade or Gatorade an isotonic drink? I thought they were bad for you because of all the sugar?
 
 
My output varies from thick to watery, depending on what I've eaten and what supplements I've taken.

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/10/2011 6:31 AM (GMT -6)   
Nope, didn't have a thyroid test. I will talk to my dr about it. I've had a thyroid test in the past though, and all was well. That was like 4 years ago or so...but I'll check it out. The dehydration is totally likely though, I think.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 8/10/2011 7:27 AM (GMT -6)   
Hubby also mainly drinks water as well. Based on some advice here I remind him to have a glass of V8 in the afternoon. When he comes in from golf and due to the heat right now I have him drink a glass of the coconut water which I strain the coconut bits out of. They are soft but figure why bother with them just in case. It is expensive - I buy the taller can which gives him 2 servings and works out to be a tad cheaper than the regular size can.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 8/10/2011 7:57 AM (GMT -6)   
My surgeon told me I should aim for 4 quarts of water a day, so I try to get close to that. For some of my long hikes lately on hot days I have drank almost 7 quarts of water. I do mix powdered Gatorade in and eat salty snacks so I keep up my electrolytes up with all that water. I have had kidney stones in the past, so I don't take any chances with hydration. I hear you on peeing issue. I lead hikes for kids at work that are around 2 hours long, and I really have to hold it sometimes. I can handle that more than UC urgency though:)
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 8/10/2011 9:59 AM (GMT -6)   
Don't forget it doesn't just have ti be water you drink. Latest studies show that any liquid counts towards your fluid intake. I can't drink plain water, if I try I heave it back up in 15 minutes. My stomach won't let it drain out almost as if it doesn't recognise it. If I put squash into it then it's fine, almost like if something doesn't have calories my stomach doesn't think it needs to do anything and it just sits there until I'm sick. Very odd but that's the explanation my GI gave me, so if only plain water available I could drink it all and still be dehydrated as body can't process it, odd.

Anyway, I drink 5 mugs (300l) of decaff tea, 2 bottles (500ml) of isotonic drinks, 1 pt (568ml) milk, 1 pt (568ml) thck high calorie milkshake minimum a day. If it is hot then drink more and also have plenty of salt on my diet as have low functioning kidneys due to very low blood pressure which isn't caused by dehydration. So I take tablets to push bp up to 80/60 and also have really good salt intake. My kidney function tests always vary wildly.

80schick, could you have irritable bladder which friend has and just has to keep emptying it all the time even if small amounts as doesn't feel like she can hold them in and feels desperate to go even if been in last 30 mins.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

WonderTurd
Regular Member


Date Joined May 2011
Total Posts : 129
   Posted 8/10/2011 11:16 AM (GMT -6)   
80's Chick, you sound a lot like I do with your bladder. I have Interstitial Cystitis which is a pain. When it's active I get horrible pains around my bladder and I have to pee every ten minutes sometimes, and lots of the time it feels like I have to pee so bad but I can hardly get any pee out. It drives me insane! At least I can poop whenever, wherever now lol
Stacey
Ulcerative Colitis since 2002
Interstitial Cystitis since 2010
Asthma since 2011
July 12 2011 - Proctocolectomy with end Ileo (UC FREE!!!)

qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 8/10/2011 11:43 AM (GMT -6)   
80sChick said...
I really only drink regular water and coconut water (love it!! but it's so expensive). Is like Powerade or Gatorade an isotonic drink? I thought they were bad for you because of all the sugar?
 
 
Yeh its like Powerade , Lucozade etc. Or alternatively there is a recipe to make your own which in essence is squash and salt.  And yeh I imagine there is sugar in the drinks but as far as I'm aware its not an excessive amount and the salt in the drink is the most important to make sure the drink is absorbed.

24 y/o female from UK dx with UC (Proctitis) Jan 08. Never fully been in remission, resistant to nearly all meds tried. Also dx with IBS. Proctocolectomy+pouch surgery with temp loop ileostomy 9th April 11.
Currently taking daily:Tramadol, 20mg MSR (slow-release Morphine), 40mg Loperamide, Cyclizine, 60mg Seroxat (anti-anxiety), Multivitamins+Iron

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 8/10/2011 12:22 PM (GMT -6)   
Since having my ileo I have noticed that I crave salt more than ever. I crave pickle juice and can drink tons and know this can not be healthy. So, I decided to try adding a little extra salt to my food.

I also eat a small bag of lays plain potato chips when I feel low on salt as these seem to have more potassium and salt than gatorade, and I have found that I hardly ever crave salty pickle juice.

Since adding extra salt I have also noticed I urinate less, which is wonderful seeing as I am a school bus driver and have to drink alot during the hot weather.

I also found that drinking any liquid on an empty stomach equals more bathroom trips. So, when I am working, I eat some salty crackers or chips and chug a ton of water or powerade and I am fine.

Maybe this will benefit somebody else.

80schick, I forgot to ask you how were you doing with your blockages. I just went through 4 surgeries due to surgical complications, and one of them was due to my bowel twisting, exactly like what you have experienced. My doctor said I may require another surgery if it happens again. Just curious about how you were doing.

Tracy
End ileostomy due to colonic inertia and pelvic floor dysfunction.

Post Edited (answers4me2) : 8/10/2011 11:26:39 AM (GMT-6)


80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/10/2011 5:12 PM (GMT -6)   
Thank you all so much for your replies!

Stripey, in all of my urologist stuff I've never heard of irritable bladder! Could be me!

WonderTurd, I've been checked for IC, but my previous urologist said it's not that. But I'm just starting to see a new one and she said she's not ruling it out.

Either way, IT'S REALLY ANNOYING!!! But yes, better than dealing with Crohn's/UC.

And Tracy, thanks for the ideas on the eating something. My obstructions have (knock on wood) been absent since a huge episode I had in March. As soon as another one happens, my surgeon is ready to do surgery. But we will see. I'm just playing a waiting game. Thanks for asking, and I'm so interested that it's happened to someone else here! What did they do for your surgery?
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 8/10/2011 5:55 PM (GMT -6)   
Stephanie, my 1st surgery was June 20th and the doctor did a total colectomy, repaired my parastomal hernia, and turned my temporary loop ileo into an end ileo. I had many complications and 3 more surgeries and one of them was the bowel twisting....my doctor said it is NOT common at all. I can't remember what he said he would do if it happened again, but he did have a game plan????? I will ask when I see him for my post-op. All I know is that was 3 weeks of hell and I don't remember everything. What did your doctor say he would do? Maybe it is the same thing.

How is your yeast infection going? I started getting one, but I started using the nystop powder and an eakin seal and it cleared up, thank GOD! I hate yeast infections. YUCK
End ileostomy due to colonic inertia and pelvic floor dysfunction.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 8/11/2011 6:37 AM (GMT -6)   
yeah, it is NOT common, obviously. But it does happen! I saw a dr at Mayo about it and he suggested what my current surgeon will eventually do if it happens again, and that is like somehow tack the side of my intestine right inside the stoma to my stomach lining. We shall see...

My yeast infection is this, on a score of 1-10 (10 is worst):
earlier this summer--2
after two weeks on candida diet--1
after trying to slowly introduce normal foods one at a time for 2 weeks--4

I'm really frustrated. Wish I'd never done that diet. I just went to see an infectious disease specialist yesterday at the request of my GI. He did a urine sample, stool sample (that is one perk of an ostomy...that's easy!!), and a tongue scrape (for thrush). He said I need to go get bloodwork done to check immune functions. I go back to see him in 3 weeks. That's a long time to try to keep this thing under control!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 8/11/2011 12:36 PM (GMT -6)   
Stephanie, yeap, that is what my doctor said...that he would tack it to something...I just don't remember where. LOL I bet that would be another major surgery. What did your doctor say about that? I just don't want anymore surgeries.

The doctor wouldn't give you any diflucan for the yeast? 3 weeks might be pure torture to wait if it gets worse. Have you tried a different powder. I have 2 kinds of powder, 1 is nystop and the other one is an antifungal OTC powder. I was told to switch between the 2.

If I was you and it gets too weepy and out of control, go to the GP and ask for some diflucan until the infectious doctor runs his tests. You teach, right? We went back to school this week, but I am not going back to work until September. I hope you can get the yeast under control soon.

And I hope neither of us ever needs another surgery.
End ileostomy due to colonic inertia and pelvic floor dysfunction.

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/11/2011 6:48 PM (GMT -6)   
Yes, I have tried diflucan and use nystatin during every change. But it only works for so long and you can develop an immunity to it. I will figure something out.

Yes, I'm a teacher and we just went back two days ago. Busy time!!

I hope I never need another surgery but I can deal if it'll fix this problem. :)


....still, people haven't really answered my question of how many oz of water/liquid I need a day. Suggestions for a goal for me???
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 8/11/2011 7:29 PM (GMT -6)   
My doctor told my mom that I need to drink 50 oz of liquids per day. I have also read that you take your weight and divide by 2 and that is how many ounces of liquid you need per day. I usually drink 3 or 4 of the 16.9oz water bottles, plus tea, milk, or whatever else I drink. I have also increased my salt intake since it is so hot with hopes that this will help me retain fluids better.

I hope this helps, Tracy
End ileostomy due to colonic inertia and pelvic floor dysfunction.

80sChick
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Date Joined Oct 2009
Total Posts : 1054
   Posted 8/11/2011 7:48 PM (GMT -6)   
OOh, Thanks Tracy! I like that divide by two thing. That makes things easier :) that puts me at about 64oz/day, which is 8 glasses of water, so I will try for like 80 or 90 oz and hopefully that will make up for my ostomy and maybe be ok. Thank you!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 8/11/2011 9:08 PM (GMT -6)   
80's,

I drink about 90 or 120 oz per day just in the natural course of things. I find plain water bloating. I also need to sweeten it with something to not hang out so long in my stomach as someone else mentioned above.

Good luck. Rosemary

PS The intercystal cistitus mentioned above has some liquids that are supposed to be avoided: coffee, tea, cranberry juice, orange juice, chocolate,all the good things in life.

answers4me2
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Date Joined Dec 2008
Total Posts : 1325
   Posted 8/12/2011 8:11 AM (GMT -6)   
I have the same issue with water sitting on my stomach. Sometimes it even makes me nauseas. I wonder what causes that? I

Ironmum
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Date Joined Oct 2010
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   Posted 8/12/2011 8:53 AM (GMT -6)   
Sorry to hear of your troubles Stephanie.. the yeast thing sounds really troublesome :-( I hope you get some answers soon.

Sure someone else has already mentioned this but, one way to check you're properly hydrated is to check out the colour of your urine. If its nice and clear then you're alright (sort of sauvignon blanc colour) if darker and yellow, then you're likely dehydrated and need to drink more. It's hard to put a figure on how much to drink as we're all so different. Will also depend on the climate we live in, how active we are etc etc etc. Keep drinking small amounts during the day rather than trying to glug large amounts and stick to room temperature water rather than chilled, as the cold water will make your stomach wall vessels constrict and make it harder to absorb. That can often be the cause of feeling nauseous.

The trouble is, if we drink too much plain water, we can get 'over hydrated' (hyponatremia) which basically means we're low in electrolytes and have drunk so much water we've diluted our salt levels. People can die from this condition and it often happens in marathons where people drink too much water, sweat out all their salts, but don't replace them. I guess as ileostomates, we're at risk of this too.

Sports drinks vary hugely in their electrolyte content so you need to check the label and compare. The trouble with sports drinks though is that they're also very high in sugar. You could try using High Five Zero tablets which you dissolve in water - they have lots of electrolytes but no sugar. I think you can get them in the US? http://www.highfive.co.uk/zero_INT.php

I use Nunn in the UK - not sure if you can get them elsewhere? .. they're brilliant and give the water a nice taste too.

Hope you get some answers on the yeast thing soon... keep us posted X
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 8/13/2011 8:59 AM (GMT -6)   
Ironmum, thanks for those details about the tablets to make water taste better and also 'healthier' for ostomists. I get very frustrated going on holiday abroad as can't drink plain water as it doesn't empty out of stomach and you can only seem to buy water or fizzy drinks abroad. I drink squash and difficult to find supermarket sometimes on hols so these will make it so much easier to take them on holiday and carry around.

Did try some fruit tea granules from Lidl/Aldi few years ago and they worked well as you could have them in hot or cold water but it took a lot of spoonfuls for each glass of water so ran out after 5 days.

Thanks again, it will make all the difference having easy to carry tablets whenever I am out and about. :)
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

arpwf
New Member


Date Joined Aug 2011
Total Posts : 5
   Posted 8/14/2011 2:09 PM (GMT -6)   
HELP!

I'm 9 post-op from my total colon removal. I have no appetite and am concerned about that. Would you all mind sharing with me your stories?
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