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Back in the ER....dehydration ugh!

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Posted Today 7:59 PM (GMT 0)
Ok, so I'm getting so frustrated with this darn ostomy for my husband. No matter what we do I can't keep him hydrated. We saw his surgeon the other day and he ordered some blood work .., we got the results today and they ordered him to the ER.

He did put him on limotil on Monday and we started putting fiber in yogurt and I noticed his consistency does change but only for a short period of time. As soon as he drinks anything it's coming out the bag within 15 minutes just as liquidy as it went in.

I'm so frustrated... And so is he. He has been feeling ok but gets dizzy when he stands and has been having some circulation issues. But otherwise, urine has been normal, no fever, no vomitting, skin was alastic like it should be....

Blah....
Posted Today 8:32 PM (GMT 0)
Blah.. indeed! sorry to hear this. Not entirely sure what to suggest, but just wanted to know I hear your 'blah' and hope things improve soon. Sarah
Posted Today 11:09 PM (GMT 0)
Thanks, they ended up admitting him and now we are just sitting around ... Now they want him to stop taking the limotil... I'm like thu just put him on it... I'm about ready to pull my hair out.
Posted Today 11:53 PM (GMT 0)
amythyst.. sorry to hear about this. Yes, sometimes the std. dehydration tests don't really show what is really happening to us colonless people. But the orthostatic blood pressure thing and dizziness is a tell tale sign. It sounds like your hubbies ileo is a ways up in the small intestine. I know I posted awhile back for you about possible dehydraton and some ideas. I went through a rough time with a previous clinically classified "high output" ileo, with several trips back in the hospital, iv hydration, etc.. until I found a doctor that put a game plan together for me. Those were the tricks I mentioned in my prior post.

So I understand why they took lomotil off. They probably want to see what his body is doing on its own first. Also, lomotil oftentimes causes other problems for people - including dizziness. Immodium is easier to tolerate for many, and has better outcome for many.

See if you can dig up that other post with my list of tricks. And in the interim... check out the "anti-dumping" diet on the internet anywhere.

I never really got much help in the hospitals with learning how to manage a "high output" ileo. Usually all the hospital trips did was get things back in balance, then I would fall off again. It wasn't until this one particular doc took ahold of things, that I was able to get things under control.

Oh also... is his doctor a surgeon or GI right now. It was a GI doctor who figured out this stuff for me. My surgeons just did quick fixes in the hospital but never got stuff in control for me to manage on my own.

Let me know if you have any questions.

best wishes.

Posted 11/29/2012 1:21 AM (GMT 0)
Yes, the surgeon has told us he had to put it up really high in his track. Well he has had the limotil today and even with it twice today he is emptying the bag like every 45 minutes cause its just full of liquid. But he is 10x's better with the IV fluids and feels more energy and the dizziness is gone.

I did find your old post and I have tried to get him to do those things but he won't do it. He thinks pedialyte is the most disgusting thing ever, doesn't like Gatorade but he will tolerate vitamin water. And he drinks lots of spring water and soda.

I can only be mean mommy to an extent before we get into a shouting match. He refuses to eat anything he has eaten previously ... IE he will eat bananas for a few days and then say he won't eat them anymore cause he is tired of them. He won't touch oatmeal or peanut butter and he hates seafood.

So, he eats a lot of bread, meats, potatoes, some yogurt, pizza, chips and salsa.... Eggs, some cheese, ice cream....

With limotil and putting fiber in his yogurt the last few days we were able to get his output fairly thick but then if he drank a glass of water or something it was back to liquid output.

So, I can suggest this anti dump diet but I dunno how far I get. All I keep hearing is "I'm fine". But I know he isn't fine.
Posted 11/29/2012 2:22 AM (GMT 0)
I don't have anything to suggest but I hope things get easier for you....not easy on the spouse and person who helps to take care and it is not easy to deal with the resistance. Maybe at some point he will get tired of this and come around and will do the different things that will help him ultimately.

My husband is basically cooperative and pays attention to the info and advice I got from here when we were finding our way. However having the ileostomy placed high up certainly presents additional problems most are not facing. I know it isn't easy on either of you but I hope he comes around soon so you two can handle this easier.
Posted 11/29/2012 4:25 AM (GMT 0)
Thanks UC wife, we talked a bit before I left the hospital tonight and I made him read the post ddd45 made to me a while back. Told him I wasn't gonna drag his ass to the ER every week when he won't do what I tell him to. :)

I am thinking his problem might be on the lines of ddd45's "dumping" scenario. I think he is probably getting too much sugar from the drinks and various foods he is eating. His doctor also told us to only give him the fiber supplement once a day but I'm thinking we should be doing it with every meal as ddd45 suggested. Its not that I haven't been taking the advice you guys have given its that I married a stubbon Danish man who wants to eat what he wants to eat! ;D

He is feeling much better though...no more dizziness, is more hungry, more engery and his BP is up a bit. I hope they let him go home tomorrow.

I think this is all so much worse for me in particular because he doesn't work, I do... we are in the middle of moving about 40 miles away on 12/8, we got into a car accident and I have to get our car to the shop, I have to pack, I have to take care of him and we have a sick cat... its just so much stuff. And nobody to help me. It is easier now though that he is pretty much independant and doesn't need me to do every little thing.

Thanks for all the thoughtful replies. :)
Posted 11/29/2012 2:46 PM (GMT 0)
hey amythyst.. yes this must be so tough on you too. For me, my hubby was there for me, but I really was left to care for myself almost right away each time I got out of the hospital as he worked a lot and traveled for work. So I had to make things happen for myself.

AS far as drinks.. gatorade and vitamin water and plain water were all very bad for me when I had my high output ileo. Gatoraide and vit water are sugary and chemical filled. Plain water increased output. My doc explained that to me but I don't remember it all. Anwyays she was definitely right. I ended up using a true WHO solution - oral rehydration salts from Jianas brothers. Mixed one of them in one liter of water with a small thing of crystal lite. That may work for him, because he can select whatever flavor of crystal lite that he likes. There also is ceralyte. But I couldn't tolerate the taste of that.

Also I think I wrote earlier.. there are additional drug options that can be added on. I was on 8 immodium/day, nexium, and tincture of opium. And of course, the benefiber 3x/day. Also some fibers works differently for each person. For me metamucial stuff did nothing. But benefiber definitely made a difference.

maybe also to get you off being the mean mummy... can you get him to a GI to help him with this eating/drinking process to get his ileo under control? Or even maybe a nutritionist - however, I caution you with that, because for me.. the nutritionists never really helped.
good luck amythyst. hang in there. I know this must be very hard for you.
Posted 11/29/2012 3:19 PM (GMT 0)
Since he doesn't work have him keep a simple food log...date, time, what he drinks and eats and output times/type. If he sees it on paper and can correlate it that might make it more convincing. When he sees results with his output he prefers that may convince him "to behave" better....lol.

You have A LOT on your plate (been there) so I totally understand. Come here to at least get some support and advice for yourself too. One day at a time....you don't want to get sick next.
Posted 11/29/2012 10:44 PM (GMT 0)
     I was hospitalized twice this past summer for dehydration.  If he has a watery output try giving him applesauce.  This sort of thickens things up for me and so do fresh apples, but make sure he chews them (without skin) very thoroughly.  He doesn't need a blockage.  Peanut butter is another food that can thicken his output.  Good luck!
Posted 11/29/2012 11:22 PM (GMT 0)
Thanks, he won't eat applesauce but he will eat apples. Apples seem to be the only thing that thicken him up... I may have to switch fibers cause I've been using metamucil and it doesn't seem to be working much.

The docs want him to take Lomotil with every meal now as well as fiber... the nutritionist I talked to a lot today ... she wasn't so helpful in offering suggestions but I was giving her advice from what you guys have been telling me and she was like yea that's a good idea... she also recommended that we make our own electrolyte stuff... the Jianas brothers stuff is just soooo expensive.
Posted 11/30/2012 12:55 AM (GMT 0)
I HAVE A SUGGESTION!!!!
..................................
i am a californian living in australia. i had my total colectomy here and have had an ileostomy for 9 months.
it is very hot and humid in the part i live (Gold Coast Queensland) and it is very common for even regular people to get dehydrated.

i was given a recipe that i have posted before to the runners that keeps me so hydrated it's ridiculous. at first you have to get used the taste but it is still not bad. now i love it! it is the ONLY THING I DRINK besides alcohol.

you have to get gatorade or powerade POWDER. get yourself a good drink bottle thing, maybe 500-600ml. or you can even mix it in a water bottle from the supermarket. one of those small 600ml ones.
you take the measuring cup and put in enough powder for half that amount of water OR basically you are putting twice as much water as the mixture calls for. then you take table salt and pour in about 3/4 teaspoon.
shake it up and drink it.
drink it all day. have at least 4 of those if not more during the day. best to drink lots.

i have never been hungover since i have started drinking these even if i go on a bender! lol.
no matter how hot it is or whatever the circumstances if i drink these all day i NEVER get dehydrated.

it is the ONLY thing i drink. i do have coffee in the morning, but i don't even drink plain water. it does not quench my thirst.
the electolytes in the gatorade sort you out and the added salt helps with your missing salt needs and helps to absorb the water now that you have no colon.

do it. try it. never be dehydrated again!!!
Posted 11/30/2012 1:19 AM (GMT 0)
UGGGGG!! So frustrated still... ever since he got home from the hospital its been watery... well ok I take it back he ate an apple when we came home and it was thick for oh....about an hour...then it went right back to watery... is he supposed to eat apples all day long? So far that is the only thing that has made him thick.

He has had lomotil with his meals today... he ate curry chicken with rice for lunch... has cut back on drinking while he eats...and has been eating a little yogurt with fiber mixed in it with every meal today...still watery. For dinner he had sausages and potatoes that he baked in the oven (and put extra salt on his potatoes) ... still watery... I don't get it!! >< They said he shouldn't be outputting more than 1500 ml a day... he empties his bag once and there is 500 ml in it... I'm going to pull my hair out...seriously.

I found this online:
http://ultimareplenisher.com/
I ordered him some of the samples ... it looks promising.

Thanks for the suggestion Kazygirl... we may end up trying it. :)
Posted 11/30/2012 1:45 AM (GMT 0)
Just wondering, how much sugar is in the yogurt? I can't remember if you specified what type of yogurt but it can have a TON of sugar.
Posted 11/30/2012 1:53 AM (GMT 0)
Hmm... LOL... you may have a point. Totally didn't think about that. UGG there is sugar in everything... lol. I believe its Dannon low fat vanilla yogurt.

Is there a good brand with low sugar that is vanilla flavored?

It has 33g of sugar per 1 cup.  And I've been giving him less than a cup at a time...but I guess that's still a lot of sugar?

Post Edited (Amythyst) : 11/29/2012 6:58:58 PM (GMT-7)

Posted 11/30/2012 2:31 AM (GMT 0)
Yogurt has a lot of sugar in it, i think the greek kind is supposed to be better, it has more protein or something. It tastes awful though!
I second kazygirl's suggestion about the water, although i wouldn't use the gatorade, but I have heard of drinking water with a tiny bit of salt. It really helps hold the moisture in.
Applesauce thickens mine up, but apples thin it out. Something i have noticed in the past few days is that sweet potatoes not only quardraple in volume, but they turn into the gunkiest, thickest mess! If he will eat sweet potatoes that might help.
Posted 11/30/2012 4:30 AM (GMT 0)
We're gonna try the electrolyte power stuff that I linked... it has some really good reviews and looks promising.

I also had him drink some really salty broth a little while ago... I read it is good to drink broth every few hours when trying to combat watery output.

Its actually really wierd... he hasn't had to empty his bag this much since he first came home from the hospital.  Its like they put so much fluid in him that its just running out...but I know that can't be true since they were putting it in his blood stream.   But we have literally emptied his bag like 500 ml of watery stuff and then I can sit and watch it fill back up again within like 15 minutes.  Must have dumped like 4000 ml since he got home from the hospital this afternoon.

We usually do not have this much of an issue... I would have thought being in the hospital would have helped this but it seems to have made it worse. 

He even ate 5 marshmellows... no effect.

Post Edited (Amythyst) : 11/29/2012 9:34:11 PM (GMT-7)

Posted 11/30/2012 5:02 AM (GMT 0)
I know it doesn't make sense, but even when it goes in your blood, it still has to come out. Think about how much you pee after you've had an iv. When I was in for my adhesion surgery I didn't actually drink much of anything, just constant iv bags for days. Part of the time I obviously couldn't drink, but I peed like a crazy person for days after they unhooked the iv! I guess because it does go straight into your blood it takes longer to come out, or something.
Posted 11/30/2012 12:53 PM (GMT 0)
You might check in with the Chrons people. They have all sorts of ideas for thickening output.
I know one of them is Colestipol. I took it for a few years for cholesterol. This would counteract the bread which the liver takes and turns right into cholesterol. I had to take Miralax to thin my output because of this med. You'd need a Rx. Ask your doctor. It comes as a horse pill, but also as granules which dissolve in soup, applesauce, drinks, etc.
Posted 11/30/2012 2:11 PM (GMT 0)
Just want to, say I am sorry for the struggle you are both going through, I can understand how frustrating it must be! I agree with the sugar intake - that will make things SPEED through the system. I hope the doctor's are able to figure something out soon!
Posted 11/30/2012 2:21 PM (GMT 0)
amythyst.. that Jianas brothers stuff is the cheapest thing ever. I think its like $60 for 125 packages. One package makes one liter of drink. When I was in your husbands situation, doctor instructed me to drink 2.5 liters a day. So it really wasn't much money. Way cheaper than gatoraide, pedialyte, vitalyte, etc.. Also he really needs to be using an electroylyte beverage that replaces near exactly what his body is dumping. That's why most sports drinks are useless for people in his situation. I  have had three different doctors tell me that the best ones pre-made are pedialyte and ceralyte. And then the cheaper route is to find a true WHO (world health organization) solution.. which is what Jianas company makes. I have never heard of the one you linked to, but it looks expensive.

He really needs to get rid of sugar almost entirely. That dannon yogurt stuff is extremely high in sugar (and also very chemically) For yogurt.. do greek 0% plain yogurt. Try fago or stoneyfield farm. Put in some pure vanilla extract for flavoring.

Try to get back to basics with food. Chemically stuff was a huge problem for me.

Also immodium oftentimes works better than lomitil. Has he tried immodium?

ok and looking at your meals... here's what would've caused me massive output in that meal when  I had a "high output ileo." Spicy foods - guaranteed gushing. So the chicken curry would not have been in my meal plan. Also sausages.. fat and weird stuff in them. Again.. that would have guaranteed gushing. I know your wonderful husband likes good tasty foods. But see if he is willing to switch his diet for just one week to see if he can get some results that way.

So my adjustments when I had a high output ileo to your meal from yesterday would be as follows:

Breakfast - fresh oatmeal - not from the instant packagaes. The real stuff cooked in a pot on the stove. And some toast with all natural peanut butter on it.

Lunch -  plain chicken baked or sauteed with fresh herbs and sea salt and plain white rice. Rice was a serious slower downer for me.

And then for dinner... maybe some beef -like a roast and potatoes in the oven.

And NO DESSERTS. tell him I'm sorry about that. But he really has to try to cut out the sugar to see if it will help him.

the hot broth.. was a big big no no for me. Anything hot and liquidy again.. would gurantee gushing. So I never had soups, broths, or hot drinks.

Also.. have the docs asked him to measure his input and output. Meaning track the volume of liquids going in and track the liquids going out (ileo bag and urine). I am wondering if he also is drinking maybe too much non-valueable liquids. Meaning what is he drinking other than a viable electroylyte beverage. In  my case.. when I had my problematic high output ileo.. I ended up drinking NOTHING except for the WHO solution.

and for a note of cheer... I know you two can get this thing under control. Mine was exactly the same as his gushing gushing gushing. But I got it so under control that I even ran three half marathons with my high output ileo. So it is manageable. You just have to learn the rules and play the game by the rules!

Post Edited (ddd45) : 11/30/2012 7:34:57 AM (GMT-7)

Posted 11/30/2012 3:19 PM (GMT 0)
     Wow, these posts are all interesting.  I had an issue with dehydration this past summer due to 1) my own fault...went on the beach in 100 degree heat (Jersey shore..yaaaa), then went into the casino and drank a mudslide.  Alcohol is a big no no when dehydration is an issue.   During that night I got up to pee, noticed my bag was almost full shocked   and started vomiting.  After that, I have NO recollection of my husband taking me to the hospital, my having CT scans...NOTHING.  We were vacationing in our RV and my hubby had to stop at a police station to ask for directions to the nearest hospital.  Poor dear must have been scared out of his wits.  They kept me overnight to make sure I was sufficiently hydrated.  2)  The following week, back in our local hospital because I contracted an intestinal virus.  The doctor there told me when things move fast through the intestinal tract and you have an ileo, it is almost impossible to hydrate yourself fast enough.  It is best to have IV's in the hospital.

     Did he try the peanut butter?  I know this is soooo frustrating, but things will calm down, I can guarantee it.

Posted 11/30/2012 3:56 PM (GMT 0)
Well, I suppose "expensive" is a matter of perspective... I was able to buy some of the powder I linked for 16 dollars. I can't really afford to spend 60 bucks on a bunch of stuff that he may end up hating and then I am out 60 bucks. I have had to throw away so much stuff I've bought lately because he refuses to eat it or drink it. I had bought a bunch of pedialyte but he took 1 sip and said nope not drinking it. Luckily I was able to return the unopened ones.

I hear what you're saying and I appreciate the suggestions... but he won't do it. So, I guess I'll just have to deal with taking him to the ER all the time.

He'll never stop eating sausages... he's Danish and that's what they eat lol. He will not eat oatmeal... the nutritionist said I could give him oatmeal cookies if he won't eat actual oatmeal. Getting him to not eat spicy food is also probably a no go but maybe a little more pursuasive. He also refuses at all costs to eat the same things over and over. We always throw food away because he refuses to eat leftovers. So, he won't eat the same thing twice in a row.

I think the broth last night helped actually... before we went to bed he had a lot thicker stuff in there and we didn't have to get up in the middle of the night to empty. And this morning he had bread with peanut butter and a little jelly and he says his output is like applesauce now...so, that's good. Maybe it was so bad yesterday because of all the fluids they pumped into him... I dunno. We'll see how it goes today.
Posted 11/30/2012 9:31 PM (GMT 0)
Your husband is an adult, and it sounds like eating what he wants to eat is more important to him than controlling his output. That's a choice he can make, but then he has to live w/the consequences. Unfortunately, so do you.

This seems like an impossible set up for you.... it's kind of like if someone wanted to lose weight but insisted on eating ten donuts a day, but other than that, you're supposed to help.

I feel for you.... really hope you can find something that works. But really, if he's not working with you, there's only so much you can do. Please keep taking care of yourself too.
Posted 11/30/2012 10:44 PM (GMT 0)
     I agree with blueglass.  Sounds like your hubby is a stubborn one, but when it comes to his health he better wise up.  My husband was a bit like that.  He has had high cholesterol for years, but, refused to take the medicine because it gave him back aches.  Ok to that point, but he also refused to watch his diet, ate donuts, cookies, etc..  When I bought low fat ice cream he called it "crap" and went out and bought the "real stuff."  Well, that "real stuff" landed him in the hospital with a heart attack in March.  Luckily for him when he complained at 1am about his teeth hurting, I knew it couldn't be indigestion which he had complained about all day.  However, neither he nor I gave the indigestion a second thought since he always gets indigestion and still was eating the donuts.  So, when he said his teeth hurt, I jumped up and dialed 911.  I think I saw a segment on Dr. Oz about teeth hurting when having a heart attack.  The main artery to the heart was blocked 100%.  He had a stent put in by 3am that morning and discharged from the hospital two days later.  He is doing fine now....guess what....no more donuts..lol.  AND...he is taking 20 mgm of Lipitor (with no side effects) and eating that "crappy" low fat ice cream.

     You sound a bit frustrated with your hubby, so just take the bull by the horns and tell him you are not gonna help him if he doesn't try to help himself.

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