Low Electrolytes - Advice Needed on how to keep them up

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Scott Crohnie
New Member


Date Joined Jan 2010
Total Posts : 16
   Posted 5/9/2010 10:58 AM (GMT -6)   
I got a permanent colostomy in Feb of this year due to my Crohn's. The surgeon had to remove part of my small bowel the ileium I believe and a small part of the colon as well as my rectum which was a mess with fistulas etc. This is second surgery I've had for Crohn's Disease having previously had part of my bowel out in 2000. I am now having a problem in keeping my electrolytes up in particular Magnesium and Calcium. On Wed there my magnesium was at 0.1 and my calcium 1.53 and I was in hospital there to get these minerals through a drip. I was only in the hospital a few weeks back for the same problem. They have increased my supplements and gave us a lot more through IV this time but it looks like my gut is absorbing very little of the supplements.
 
Has anyone else had this issue and if so how do you keep your calcium and magnesium up? If increasing the supplements doesnt work my doctor has simply suggested just going into hospital every few weeks to get a topup by IV which is not an ideal solution considering I work full time. I have searched the forum but the only solution I found seems to be increasing the supplements was just wondering if anyone had any other solutions?
 
They are going to check my thyroid gland on Monday in case this is contributing to the low electrolytes but my doctor doubts it will be this.
 
The only change to my medication recently is lowering my predisolne(steroid) from 20mg to 10mg. The only other medications I am on is the supplements and imodium to try and slow the output from the stoma.
 
Cheers for you help guys!

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 5/9/2010 2:08 PM (GMT -6)   
The only way you can absorb calcium is if you are getting enough Vitamin D. Did your doctor check your Vitamin D levels? This is something you should ask for as Vit D deficiency is an epidemic in the US. I am in excellent health, live and hike in sunny California, and I was dx D deficient earlier this year and was given a supplement. So for as long as I was low I was not absorbing calcium.

As for electrolyte, my favorite is Vitalyte. It was developed by an Olympic runner/chemist and is the best hydration product on the market in my opinion. You can purchase it at REI stores or online at www.vitalyte.com They have a variety pack where you can sample all the flavors. The citrus is most like plain water if you don't like much flavor. My favorite is orange.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


finallyfree
Regular Member


Date Joined Aug 2008
Total Posts : 470
   Posted 5/9/2010 9:33 PM (GMT -6)   

Another way to get electrolytes is through coconut water; it's the best natural source available.  You can purchase juice box like containers at any Wegman's in the Health Food section or most Health Food stores.  You may also purchase it online; my favorite was Zico.  I never had any electrolyte problems even when I was having 20+ bms after my colectomy but I drank the coconut water faithfully.

Good luck.

Judy


 
 
Judy
 
spleen/appendix/gall bladder-removed/endometriosis/complete hysterectomy at 29/sinus surgery/numerous allergies & asthma/chronic kidney stones/ pancreatitis 3x's/2 knee surgeries-now need replacement/bunion & 2 neuroma surgeries/shoulder surgery w/ pins-which also froze following surgery/severe adhesions & scar tissue-stomach to chest-liver to ribs-colon to pelvis/severe IBS w/ constipation/subtotal colectomy 7/08/ c difficile/many kidney surgeries 5/09 through next summer
 
There's AWAYS HOPE, there's a doctor out there that WILL help you and things WILL get better :):):):):)


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 5/9/2010 9:56 PM (GMT -6)   
Pedialyte? I know that sounds crazy!
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS, Chronic Constipation, Colonic Inertia, Rectocele
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel
Tried: Pentasa, exercise, diet changes, pro-biotics, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, Promethazine, Zofran
 
 


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/11/2010 12:15 PM (GMT -6)   
Gator Aid. 64 oz. a day - minimum.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/11/2010 3:02 PM (GMT -6)   
watch the sugar content in many of the electrolyte drinks...it's way too high for an ostomate and will further dehydrate us:(

Vitalyte's sugar is only 10gm per serving which is much less than most cereals!!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/11/2010 3:08 PM (GMT -6)   
they have low sugar/sugar free gatorade and powerade
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 5/13/2010 1:58 PM (GMT -6)   
in Canada we have G2 which is low sugar Gatorade....7g instead of 35g. We were told not to drink regular gatorade as the high sugar will create more output and thus dehydrate you more

Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 5/13/2010 2:32 PM (GMT -6)   
I have every day:

-gastrolyte or pedialyte (a no sugar electrolyte mix)
And the following in pill format:
-Calcium/Magnesium/Vit D
-Potassium
-Vit C
-Multivitamin

And it works a treat. Good luck!
Diag proctitis 97 - major flare and extension to left sided colitis Aug 2006 - present.

I bled every day from Aug 2006 (I quit smoking in June 2006) to Jan 2010.

Imuran (Azathioprine) game me liver damage. LDN no luck.  Asacol and mesalazine enemas - seemed to make worse. Lots of Prednisone :(  No luck on drugs!

JPouch, total colectomy and ileostomy (part 1) completed Jan 2010 :)
Takedown (part 2) April 15 2010.

UC no more!!!
 


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/14/2010 1:39 PM (GMT -6)   
Interesting about the Gator Aid. I've been using the powder and mixing 1 packet of the regular with 1 packet of the G2 for a couple of years (it's easier to take to work, etc.) with no problems - and my GI said nothing about the sugar thing. I am in the process of switching to G2 only - mostly because, and I know you'll all get a kick out of this since we can drop 20 lbs. in a week when in the middle of a flare, but I want to lose about 15 lbs!!

Anyway, my electrolytes were so messed up all the time that my doctor told me no "free water" - period.

Scott Crohnie
New Member


Date Joined Jan 2010
Total Posts : 16
   Posted 5/14/2010 2:51 PM (GMT -6)   
Thanks for the info guys. I should have pointed out I from Scotland so not sure if all they drinks are available here. How much of your daily amount of the electrolytes do these drinks provide? The ones I've seen so far dont seem so high.
 
I've been out the hospital since Monday and not had any of the symptoms of low calcium/magnesium fingers crossed simply upping the supplements has done the trick but it is probably too early to tell and I wont be convinced it is working till I get my bloods done next week.

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/14/2010 2:59 PM (GMT -6)   
cleo35 said...
Interesting about the Gator Aid. I've been using the powder and mixing 1 packet of the regular with 1 packet of the G2 for a couple of years (it's easier to take to work, etc.) with no problems - and my GI said nothing about the sugar thing. I am in the process of switching to G2 only - mostly because, and I know you'll all get a kick out of this since we can drop 20 lbs. in a week when in the middle of a flare, but I want to lose about 15 lbs!!

Anyway, my electrolytes were so messed up all the time that my doctor told me no "free water" - period.


Same here. My doctor has told me not to even bother with plain water because I need more electrolytes. He also never suggested the sugar content would be bad
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


Clicky
Regular Member


Date Joined May 2008
Total Posts : 166
   Posted 5/14/2010 8:13 PM (GMT -6)   
Hey Scott - I lived in Scotland for 11 years - and I cannot remember them having gatorade or similar there. Go to the chemist and ask them for an electrolyte mix - they should have this. It is very frequently used for babies with dehydration. In the UK you can buy dioralyte - see http://www.netdoctor.co.uk/medicines/100000800.html . I am sure a chemist would advise. Good luck!
Diag proctitis 97 - major flare and extension to left sided colitis Aug 2006 - present.

I bled every day from Aug 2006 (I quit smoking in June 2006) to Jan 2010.

Imuran (Azathioprine) game me liver damage. LDN no luck.  Asacol and mesalazine enemas - seemed to make worse. Lots of Prednisone :(  No luck on drugs!

JPouch, total colectomy and ileostomy (part 1) completed Jan 2010 :)
Takedown (part 2) April 15 2010.

UC no more!!!
 


Scott Crohnie
New Member


Date Joined Jan 2010
Total Posts : 16
   Posted 5/15/2010 4:09 AM (GMT -6)   
You can get Gatorade here in the UK now since 2008 as well as powerade. Although the main sports drink over here is Lucozade which already drink a fair bit of. Do think you got alot of benefit from these drinks? The amount of each electrolytes in them seems pretty low, especially as I'm currently taking about 3 to 4 times the recommended daily allowance:
 
PowerAde: serving size 8 fl oz; calories 70; fat 0g; sodium 55mg; potassium 30mg; total carbs 19g; sugars 15g; protein 0g; vitamin b6 10%; vitamin b12 10%; niacin 10%

Gatorade: 8 fl oz; calories 50; total fat 0g; sodium 110mg; potassium 30mg; total carbs 14g; sugars 14g
 
Thanks Clikcy will have a look at dioralyte.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/17/2010 1:39 PM (GMT -6)   
pam: I didn't argue with him either - even though I'm a little sick of this stuff I can tell ya - because after being hospitalized with severe dehydration I never want to go thru THAT again. My brain was actually addled and my BP and heart rate were all over the place....it was a little scary.

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/17/2010 2:27 PM (GMT -6)   
Me, too. I'm still struggling with it. My heart rate gets very high and my blood pressure gets very low and I get weak, dizzy, unable to walk, etc.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 1 Tsp. (4/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet


Sesberry
New Member


Date Joined Apr 2010
Total Posts : 9
   Posted 5/18/2010 8:36 AM (GMT -6)   
Powerade is available in Waitrose and Morrisons (and Tesco too I think)

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/23/2010 5:00 PM (GMT -6)   
So, everybody....I have been looking for you for 2+ years now.................I live in a constant state of lightheadedness and today had severe dizziness.

I've read your posts and will print them off for my reference.

I have been drinking 3 quarts of plain water per day in an effort to output 2 quarts of urine per day just like a person with a colon (I have a permanent ileostomy as of August 2007 due to a severe colon and rectal injury suffered in 2006). I have been dizzy for 2+ years.

Whoever it was that said their doc said words to the effect "No free water". Can you please elaborate? Did he mean drink the electrolyte stuff instead of plain water?

How much of it should we drink per day? I assume some plain water would be good too as would be orange juice for potassium, broth for salt, etc? How much should we pee per day? Or are ileostomates just not going to put out the urine a colon intact person does?

I have to go with Pedialyte and the new G2 Gatorade with the less sugar as sugar increases my output. I will also check out Vitalyte. Fake sugar like sucralose and sucrose really increases my output.

My electrolytes always measure normal in blood work, but I have all the symptoms of them being way off: feel breathless on exertion, muscle cramps, severe fatigue, lightheaded, low BP, the list goes on.

Does anyone else feel this way yet when they have blood work, all looks fine (then the doc thinks you're nuts)?

Thanks, Do Tell, Sincerely, Rosemary

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/23/2010 5:26 PM (GMT -6)   
My doctor told me to pretty much only drink the electrolyte drinks and not water because I get so dehydrated.
That's interesting about your blood work...mine always shows dehydration and electrolyte imbalances, but those are all the symptoms I experience when that happens. Do they actually tell you the numbers or just say it is fine? Maybe you are more sensitive to things being just slightly off. Sometimes my numbers aren't that bad, yet I can feel severe symptoms and always feel better after a couple liters of IV fluid quick.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Lomotil 2 Tsp. (4/day),, Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 5 mg (1/day), Florinef .05mg (1/day)


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/23/2010 5:42 PM (GMT -6)   
Hi Pam222,

The doc gives me an actual copy of my blood work and my electrolytes are either in the low or mid portion of normal range which is printed right next to my result. BUT you are right, I may be sensitive to being in the low normal range. I'll try to find some old electrolyte tests when I still had the use of my colon and see if they are now even that much different.

I did try an IV once just for the heck of it and it increased my urination and I felt great (like the old me) for about 3 hours, then I was back to the old tired sloggy feeling when it wore off.

On a vacation I actually passed out and needed 2 liters of IV saline until I started peeing and felt normal again. It was not super hot but like 80's and very strong sun in St. Thomas. I'd drunk 1 gallon of water and still dehydrated and passed out. I wondered if I should have been drinking an electrolyte drink instead. My ileostomy output was not huge so I was not losing a lot of water in that way. But I completely stopped peeing, got real dizzy, saw stars, shook, the whole deal.

Interesting thing was that while I was passed out the ship's doc took blood and checked my electrolytes. He was really surprised that they were actually great. They were just all in the middle of the normal range that time. Go figure. Am open to more suggestions and ideas. Thanks for responding.

Rosemary

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/24/2010 2:39 PM (GMT -6)   
esoR: that was me and that's correct no plain water - at all. It washes sodium out of your body. Somebody mentioned that these drinks can't possibly return electrolytes to normal and that's correct but they can keep them from plunging to the point where you need supplemental potassium or sodium pills.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/24/2010 4:41 PM (GMT -6)   
Thanks cleo35. Rosemary
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