fluids for how long?

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ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 4/30/2011 2:37 PM (GMT -6)   
All:
 
Still trying to decipher "medical speak" and the like....I understand we have to drink plenty of fluids post surgery for up to 3 months..maybe longer, as our small intestines adapt to their new work of absorbing liquids....
 
Just when can we let up a little on drinking so much? 
 
For those who've had an illeostomy going on several years....how much fluids do you drink now? 
 
As I'm in Florida, I expect to drink a little more even after things are "normal." 
 
Anybody's experiences with fluids will be great to read.
 
enigma
 

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 4/30/2011 2:46 PM (GMT -6)   
hi,

as far as i know, it is always recommended to keep a high water intake. not only for ileostomates, but for healthy ppl too.

i'm not sure if i can compare myself to you. i mean i do have an ileostomy, but i have a problem of slow motility of my small intestine and need to keep a soft-liquid diet along with a lot of prune juice. i make sure i drink lots, cuz it helps my slow motility. i'm 10 mons post ileostomy op, i live in israel and i drink about 2 litters of water/day. but it's not b/c i can get dehysrated, it can never happen to me since my small bowel is slow and absorbs the water very well (too well). i drink a lot to help my constipation.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 4/30/2011 2:57 PM (GMT -6)   
2b colonfree:
You live in Israel?  Wow!  It is nice to have your reply.
I'm wondering if my small intestines are a little like yours.....I've done nothing but pee since surgery (two weeks and two days ago)....and, the homehealth care nurse warned me about my stool getting too thick..imagine that..I was worried about too much stool and emptying....
 
I'm on a soft diet..low fiber....and, my stool seems to be more thicker than loose..except when I drink Ensure protein drink w/milk and a piece of toast in the morning.....then, it is looser....otherwise..it is thicker....I eat chicken, turkey, some beef, fish, rice, potatoes, bannas (for potassium), regular milk (cow's milk) for calcium, D and potassium also as I've had problems (before surgery) with low potassium.....apparently my colon was just about done when they removed it.....
 
Where in Israel do you live?  Sorry for being inquisitive and don't mean to be annoying, I just am a very spiritual person, belive in God, and always am happy to meet someone from Israel.
 
I live in Titusville, florida..not the most "wafer friendly" place to live....
 
With warmest regards,
enigma
2b ColonFree said...
hi,

as far as i know, it is always recommended to keep a high water intake. not only for ileostomates, but for healthy ppl too.

i'm not sure if i can compare myself to you. i mean i do have an ileostomy, but i have a problem of slow motility of my small intestine and need to keep a soft-liquid diet along with a lot of prune juice. i make sure i drink lots, cuz it helps my slow motility. i'm 10 mons post ileostomy op, i live in israel and i drink about 2 litters of water/day. but it's not b/c i can get dehysrated, it can never happen to me since my small bowel is slow and absorbs the water very well (too well). i drink a lot to help my constipation.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 4/30/2011 4:47 PM (GMT -6)   
enigmawrap, the reason for your thick output could be that looking at what you put down you ate it is mostly low residue. There is no problem with that, in fact it is a good thing as it takes less effort for the bowel to process the food and results in less output, hence why it is thicker.

I drink more in summer due to the warmer weather in UK (well supposedly) and so drink about 250ml every 90 mins or so. In winter I drink bit less. I have to drink more than normal optomist as have short bowel syndrome so absorb even less than a normal ileo would. Don't forget to also keep up your salt intake in hot weather as not only do you lose water when you dehydrate but also salt. A packet of crisps or salted peanuts should be enough each day or twice a day if very hot or doing physical activity. When I have been on holiday to Orlando, I add salt to my lunch and dinner just to keep levels up.
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.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/30/2011 7:38 PM (GMT -6)   
I drink 3-4 liters a day. I live in Colorado where it is very dry. I pretty much always have a water bottle with me and drink lots of herbal tea during the day too. I like fruit juice cut with 50% water too. Though my output got less watery once my small intestine started to adjust, I still kept up with the bigger water intake. Figure it can't hurt to drink this much (as long as you also keep your salt levels up).
-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 11/8/201

Post Edited (Blueheron) : 4/30/2011 7:41:40 PM (GMT-6)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/30/2011 11:08 PM (GMT -6)   
you alwyas have to drink a lot, i probably drink about 5 bottles of water a day, i just fill the same one for about 3 weeks, lol. i dont drink a lot of soda or anything, cause all that sugar can make your output really watery and hard to deal with, plus can actually help dehydrate you, and add salt to your diet.
i was so happy to find out i needed more salt! i was like woo hoo!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/1/2011 2:50 AM (GMT -6)   
hey there enigma :)

feel free to ask any questions you want, i really don't mind :)) i'm grateful to have found this site 2 1/2 yrs ago, and to be able to talk to all of you folks. this site has helped me tremendously, since there was no isralie supposrt group on the net for ostomies, or ppl who gone through intestinal surgeries. inspired by this site and how it's been such a life saving for me, i now took the intiative and only a month ago opened an israelie ostomy forum, in hopes it'll be as active, supportive and informative as this one :)) it is starting to be very active and i'm so happy about it(not nearly as this one, but also can't compare the US + other english speaking countries's population to israel's one). but anyway i can never leave this site, this site is like.. i don't know, i just love this place :))

i live in Hertzliah, which is really close to Tel Aviv (north to Tel Aviv). it's a town by the beach and VERY humid in the summer, more than 80% humidity! not very wafer friendly place either :p mountainous cities like Jerusalem, Carmel (in Haifa), Zichron Ya'ackov and many other mountainous cities are much cooler in the summer :)

you eat bannanas?? wow.. i could never eat those. can't eat rice either. i don't think you have the same problem as mine. in my case, even if i eat only liquids all day, it will hardly come out to the bag unless i drink 250 ml of prune juice. also fresh squeezed pear juice has the same laxative affect on me as prune juice. but even with drinking these juices, i still have to keep away from thickening foods, like: rice, pasta, potatoes, bananas etc. i can eat those once in a while, but not every day, otherwise even the juices won't help. so i assume (and hope) your smalls are not as bad, right?

in any case, we should always keep drinking lots of water. and hey, if you ever come to israel, let me know :) i'm already meeting Rosemary (esoR) on the 16th in Haifa YAY, very excited!!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/1/2011 8:02 AM (GMT -6)   
From what I gather everyone is different. Some need a lot more fluids than others. Not exactly sure what my husband's daily intake is but he always has water nearby and tries to sip more than drink a lot all at once. He certainly has to pee a lot!

Be sure to watch for the signs if you are not getting enough water and be sure to drink more if that happens. From what I have read if you do get dehydrated it is very very difficult to "do it yourself" and play catch up and in many cases it requires a trip to the hospital/ER for an IV so stay ahead of it.
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) and no longer in pain.

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 5/1/2011 10:03 AM (GMT -6)   
It is bad to get dehydrated and can be hard to reverse this if it happens but i have managed it. When I had a blockage last May I managed to massage it along but by the time it had released I had been being sick for 12 hours non stop and was very dehydrated. I had two choices go to my local hospital about 20 miles away and wait 4 hours in ER without fluids whilst they try to find someone on duty over the weekend or treat myself at home.

Well no brainer, I took an ondansetron tablet to stop the sickness and then drank 250ml every 20 mins. Was hard going and made myself stay awake all night but by morning was back to normal.

Not something I would recommend but works for me cause my hospital is useless for things like that, they won't just hook you uop to fluids. They leave you for 4 hours and then admit you and eventually after 6 hours they take blood and surprise surprise say 'oh, you're kidney function is very low'. So would theirs be in no fluid for 24 hours and non stop sickness for 12 hours. Then they want to do tests and x-rays and scans, it is all I can do to stop myself screaming at them. I just want a few bags of fluid, but oh no, not on the red tape NHS. Let's waste money and time and put you through every test we can while you're here. No thanks, very fast exit made.
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.

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/1/2011 10:22 AM (GMT -6)   
2b Colon Free:  Wow....it's funny, I'm trying to get with a local ostomy group near where I live...being a small town, it's kind of hard...I've been to two other ostomy groups - One in Orlando and one in Ormand Beach, Florida.....they have been great, but I'd much rather be in one closer to home...I've finally found a name/number for a possible group, but even they may be 30-45 minute drive away.
It's good you've started an Israeli forum.....I hope and pray it grows and grows and gives you and everyone in it the support they need!
 
Travel to IsraeL?!  Wow!  That would be one great trip!  I've always wanted to visit the holy sites in Israel....maybe that can be a goal in a few years....right now, I'd just like to be able to get out and drive first..then, do some shopping...then, return to work (that will be a challenge in itself)..of course, getting recovered is the number one goal now..and, that will take awhile..will be recovering and taking on the goals mentioned above over the next 2-4 weeks.
 
Sorry to hear about how your intestines work...I was worried about having lots of liquid output before I had surgery....my colon was so far gone, everyone is thinking my small intestines were already taking on some functions of the colon before it was removed....I was outputting within 12 hours of surgery.....it pretty much shocked me and everyone else....only issues I am having noe concern the skin around the stoma.....I left the hospital doing well, and things seem to slipped a bit with regard to the skin....luckily, I have a home nurses coming by...they can look at it when they are here next time and we'll see what they say....
God Bless!  You live by the ocean?  Well, where I live in Titusville, the ocean is only 20 minutes away...actaully, we have water between the beachside and the ocean that is considered brackish so they don't count it as the open sea..but, it's ocean water nonetheless.....
 
 
2b ColonFree said...
hey there enigma :)

feel free to ask any questions you want, i really don't mind :)) i'm grateful to have found this site 2 1/2 yrs ago, and to be able to talk to all of you folks. this site has helped me tremendously, since there was no isralie supposrt group on the net for ostomies, or ppl who gone through intestinal surgeries. inspired by this site and how it's been such a life saving for me, i now took the intiative and only a month ago opened an israelie ostomy forum, in hopes it'll be as active, supportive and informative as this one :)) it is starting to be very active and i'm so happy about it(not nearly as this one, but also can't compare the US + other english speaking countries's population to israel's one). but anyway i can never leave this site, this site is like.. i don't know, i just love this place :))

i live in Hertzliah, which is really close to Tel Aviv (north to Tel Aviv). it's a town by the beach and VERY humid in the summer, more than 80% humidity! not very wafer friendly place either :p mountainous cities like Jerusalem, Carmel (in Haifa), Zichron Ya'ackov and many other mountainous cities are much cooler in the summer :)

you eat bannanas?? wow.. i could never eat those. can't eat rice either. i don't think you have the same problem as mine. in my case, even if i eat only liquids all day, it will hardly come out to the bag unless i drink 250 ml of prune juice. also fresh squeezed pear juice has the same laxative affect on me as prune juice. but even with drinking these juices, i still have to keep away from thickening foods, like: rice, pasta, potatoes, bananas etc. i can eat those once in a while, but not every day, otherwise even the juices won't help. so i assume (and hope) your smalls are not as bad, right?

in any case, we should always keep drinking lots of water. and hey, if you ever come to israel, let me know :) i'm already meeting Rosemary (esoR) on the 16th in Haifa YAY, very excited!!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/1/2011 11:26 AM (GMT -6)   
thanks for the well wishes about my forum, enigma. check it out:

http://www.doctors.co.il/forum-4546

i'm the girl on the right (with the hand on my shoulder) :)

we have a support group and we meet about 3-4 times a year, go to trips together once or twice a yr and other activities. i also have a 30-40 mins drive there.

i know you can't travel at this point, you're too early post op and you have a lot of recovering and adjusting to do. hope your skin problems get fixed soon. are you using hollister's adapt rings? those are really great to seal around the stoma and heal the skin. ask you stoma nurse about it. my stoma is at the same level as my skin and if i don't use those rings, i'll have major skin problems. good luck with the nurse visit and healing your skin. let us know how you're doing.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/1/2011 1:34 PM (GMT -6)   
I've had the ileo for like 5 weeks now.
Everyday I drink:
Probably half a quart of chocolate milk. yumm
2-3 bottles of lipton green tea with citrus. also yum
probably 3 cokes.
1 can of minute made lemonade.

really I don't think I drink that much. I got so tired of water and powerade in the hosptial that i'm avoiding them for a GOOD while. Also jello... i don't think i'll ever eat jello again as long as i live.
No colon, still rollin'

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 5/1/2011 3:01 PM (GMT -6)   
2bColonfree:
 
Nice forum...sorry I can't read Hebrew!  A very nice picture of you......is the forum on facebook and can I search it in English or will it have to be Hebrew?   
 
I've always wanted to try learning Hebrew for spiritual reasons......it's a very interesting language.
 
SigmaChi:
 
Looks like you've got all of us "old timers" beat on recovery.....I'm 43..however, after years on Prednisone, I've got a longer recovery to make.....you are "lucky" to have only had UC for a few months..it amazes me that you didn't have any symptoms until everything hit the fan!  That's the first I've heard of a story like that.....glad you are recovering well....
 
One question about that stealth belt you bought....do you wear it 24/7?  When do you take it off if not?  How do you like it after a few days with it?  What is the best/worst thing about it?  And, how about having the pouch horizontal?  Is that causing any problems with the wafer?
 
Thanks,
enigma!

SigmaChi
Regular Member


Date Joined Apr 2011
Total Posts : 27
   Posted 5/1/2011 3:40 PM (GMT -6)   
Enigma,

The docs were severely confused about the UC with no symptoms, as am I lol. Honestly they said I was supposed to be in crippling pain but i wasn't. it was pretty weird.
Hope your recovery speeds up some though!

As for the belt, I got it in on Tuesday? I think. I just took it off today to wash it and change my wafer. Other than that, yes, you can wear it 24/7! I've been sleeping in it, it's comfortable enough not to press into your skin, and the best part is, your bag doesn't flop around when you lay on your sides. It's good to sleep in because it holds the bag in the pouch, which means if it overfills it won't pop off. I had this happen once before I got the belt, very messy.
The best thing about it is the fact that the material is so thin, but very stretchy and body conforming.
It holds it incredibly well. I woke up this morning, and apparently I had some gas last night, my bag was swollen up like a balloon! I'm talking completely full of air. And the belt still held it in place, didn't blow out or anything. I just unzipped the pouch at the bottom and carefully burped it. The sizes are custom fit, so you measure yourself when you order. The worst part about it, honestly I haven't found any downsides to it. It's a little awkward arranging the bag in the pouch at first after you change it, but if you unstrap the belt it makes it a million times easier.

And the plastic flange(the part that snaps to the bag) goes inside the pouch. If you go to their site, you'll see a link of how to put it on. Since the flange is inside the belt, it doesn't jerk or move when the bag gets heavy. The belt surprisingly stays in place well. When i took it off today, my wafer was still stuckk in place just as good as the day I put it on!

I'm nuts over this thing though. They have a few different styles. There's one specifically for sleep, a neoprene one for long periods of being on the water, ones with custom colors, and I think they have them that can be custom made for vertical pouch wear. Honestly, i've been wearing my pouch horizontally since I got out of the hospital and haven't had any problems.

Hope this helps, I'd highly recommend the belt. Part of why i'm recovering so well is that i don't have the mental block of having a bulgy bag hanging down in my shorts. I just kind of feel the pouch every now and then. it stretches out when it's time to change.
I'd give the guy a call before you order. He can tell you more about it. He is really friendly.
No colon, still rollin'

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/2/2011 2:07 AM (GMT -6)   
unfortunately the forum is only in Hebrew. when i started thinking about opening an ostomy forum, i sent requests to many israeli sites and only this one cooperated and there isn't an option in english. oh well, better than nothing i guess.

if you have skype, we can talk totally for free, so i can try and teach you some hebrew lol :)
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy
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