holy Crap i think i figured it out.

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debilitated
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Date Joined Jan 2010
Total Posts : 448
   Posted 5/20/2010 5:11 PM (GMT -7)   
Minor headaches, Thinkin' the TPN and little juice packets are enough...

Ive noticed I only had 1 bottle of water in probably a month. NO JOKE.
Hemoglobin is 11.0

Dehydration? I am urinating A LOT. I mean I DEFINITLY am urinating more fluid than taking in.

Theory: No wonder the minute i stand up my heart rate jumps to 160 and when i move around it goes up and bend over to wipe.. etc..
IM USING MUSCLE. If Im that dry and dehydrated.. My heart needs to work pretty darn hard. My skin is noticeably dry as well

Not looking for answers like.. Debil, your worrying too much or over thinkin.. because this post is actually one of my optimistic ones and i havent taken any xanax yet.. Haha.. so its a good one..

Does this sound RATIONAL? Drink A LOT more water? See what happens?
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 5/20/2010 5:32 PM (GMT -7)   
Water is a good thing. I know I do not feel well if I do not have at least 8 glasses a day.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 5/20/2010 6:41:46 PM (GMT-6)


MAG102886
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Date Joined Jul 2008
Total Posts : 674
   Posted 5/20/2010 5:54 PM (GMT -7)   
I drink 132oz. of water a day.  Yes, I mean 132 not 32.  I couldn't imagine how my body would function without it. I read an article how much water you should drink a day...the answer was if you urine is clear then your drinking enough.  If it has any yellow in it, your not drinking enough.
Dianogsed with Crohns: At 16 years old. 23 years old now.
Surgeries:3 Bowel Resections, Gallbladder Removed, 3 Abscess Cleanings, Fistula Repair
Current Meds: Methorexate, Vitamin B12 (injections), Nexium.
Next Surgery: None.
 

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 5/20/2010 6:43 PM (GMT -7)   
I'm on humira and not a huge water drinker. I'd get migraines after my injections that'd last a week. I decided to start drinking 2 bottles a day. Especially on my humira night, I'd have 1 bottle before the inject and 1 bottle after. I no longer get the migraines (besides the normal ones I usually get)
So water is the key!!!

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/20/2010 6:56 PM (GMT -7)   
could this be possible for seein 160 Heart rates just to get up?
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 5/20/2010 7:57 PM (GMT -7)   
yes water is essential for everyone not just us cd ers
i drink at least 8 bottles daily plus
lyn
..Co Moderator for Crohns........Alzheimers.....Anxiety/Panic

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf
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mmckenna
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Date Joined Jan 2006
Total Posts : 725
   Posted 5/20/2010 8:21 PM (GMT -7)   
Dehydration will make your heart do that, I think it's called Tachycardia and can be caused by lack of blood volume.

I'd do something about it, like start drinking water...
Matthew McKenna,
Joey's dad.
Crohn's Disease and Guillian-Barre' Syndrome.
Remicade, 6MP and a few of their friends.

"I'm just along for the ride."


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/20/2010 8:44 PM (GMT -7)   
I meant to type that on your last post, but I haven't been on much and ... I sure hope that helps! I know when I'm super dehydrated my heart rate goes through the roof. Hang in there...

BTW - speaking of dehydration... I had an ultrasound today (non-Crohn's) and they had me drink 64 oz water. 32 an hour before and 32 15 minutes before. All that water and I still had only a slightly full bladder. Us Crohnies and dehydration!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/21/2010 6:34 AM (GMT -7)   
Seriously I do drink at least a gallon a day. I am frustrated that no one told you to drink water then everything else. Like then 3 (8 oz) cups of whole milk (given that you need the fat content and calories) spread throughout the day (like with meals) and it helps with osto prevention. Then 3 (8 oz) cups of juice (no sugar added) for your fruit servings, two hours separate from the milk. Then Gatorade and etc.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/21/2010 7:34 AM (GMT -7)   
Navy, had a 32oz gatorade already and my heart rate is now hangin around 90. not bad. im going to alternate with water. I was told that if i drink gatorade i need alternate.

is it normal for it to go over 100, even if hydrated While and after eating for 3-4 hours?
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/21/2010 8:21 AM (GMT -7)   
Meet your Water requirements first (every two hours you need to have a bottle down), your milk requirements second (like during meal times), juice requirements third (snack times), then if you still have room in your bladder everything else, and I remind you people are not even allowed Gatorade until the 13 week of boot camp. I know you know this is common sense stuff you do not need gatorade to live, you do need water. For every drink you make your body work harder to process then you are heading backwards. Gatorade, like pedilyte, is for specific instances and can sometimes make the situation worse, especially when it comes to heart issues.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 5/21/2010 10:27:08 AM (GMT-6)


bbmom4
Regular Member


Date Joined Feb 2007
Total Posts : 45
   Posted 5/21/2010 9:51 AM (GMT -7)   
I absolutely love this forum... I don't know why I ever got away from it...
NO wonder I have headaches and dry skin, etc, etc, etc I hardly drink any water and never heard anything about juice being helpful for CD...
Wow... I am just soaking up so much INFO...
Thanks ya all!!!
37 yo mom of 4. Diagnosed in 1998 (CD in 3 areas), IBS also. Dealing with fistulizations and current flare. Meds: Imuran, Flagyl, Asipro, Prilosec and Prozac.


Sarah_B
Regular Member


Date Joined Feb 2009
Total Posts : 82
   Posted 5/21/2010 10:54 AM (GMT -7)   
Absolutely agreed.  I can't believe some of you are getting by with only a bottle or so a day.  The only times I EVER get headaches or migraines are when I haven't had enough water for the day.
 
Also, definitely: if the urine is clear, you're in the clear.
23 years old, Female.
Diagnosed with Crohn's Ileocolitis November 2008.
Currently taking Remicade, 50 mg 6-MP.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/21/2010 11:05 AM (GMT -7)   
bbmom,
That is just a general health recommendation the military and VA nutritionists use. Generally you want to aviod sugar, especially art. sugars. It is not an absolute. Neither is "pissing clear" a rule for appropriate intake measurement, it generally is, but it is not absolute, and depends alot on the meds you are on. Especially with heart meds.
Take care,
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/21/2010 11:08 AM (GMT -7)   
On the clear thing with urine, I heard if its clear its beer, if its yellow your mellow. So I am wondering if the clear urine is true. I know one of my meds turns my pee yellow. And I drink Gatorade all the time too.
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 5/21/2010 11:10 AM (GMT -7)   
I know the stuff has alot of calories, but I just love the powerade.

The Gatorade the G2 lower calorie stuff is nice too.

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/21/2010 12:25 PM (GMT -7)   
MMMNavy: unless you have an ostomy - free water washes out the potassium and sodium from your body. Gator Aid at least replaces some of that. And in 32oz bottle of Gator Aide 31 ounces is water.

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/21/2010 3:07 PM (GMT -7)   
Yes, Since i am on TPN my body is FLUSHING out a lot of stuff not being used. I am urinating near 1500CC a day right now.. its A LOT.

So i feel 32oz of gatorade and 16-32oz of water ON TOP of the water and stuff in my tpn is good. my resting heart rate ALREADY went down by 20bpm on the toilet and now under 100 most of the time when and after i eat.

sure its only been 1 day though.. i think hydration is key. im trying.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


appy.lovee
Regular Member


Date Joined May 2010
Total Posts : 88
   Posted 5/21/2010 3:12 PM (GMT -7)   
try it, I hopethat it helps! :)
imagination is stronger than knowledge -- myth is more potent than history -- dreams are more powerful than facts -- hope always triumphs over experience -- laughter is the cure for grief -- love is stronger than death.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/21/2010 3:43 PM (GMT -7)   
cleo,
I know exactly what ratio water to gatorade issue is (and frankly gatorade has 1% of your daily amount of potassium and about 5% of your sodium DV) for me, because I am a former marathoner. But the issue is that deblitiated was basically not drinking any water for more than a month. As a crohnie with a heart problem I exactly understand what he is trying to tinker with and it is something that he really needs to have done by his doctors and nutritionist. Because I have to have an exact measurements of vitamins and minerals measured out for me on a weekly basis, based upon blood work, and I would really like him to consult a professional about this.
Navy
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/21/2010 3:47 PM (GMT -7)   
Navy, My doctor has me TPN monitered and blood drawn EVERY Week with my TPN. My potassium, magnesium, blood sugar and Sodium are all being watched.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/21/2010 3:49 PM (GMT -7)   
Thank you that relieves my mind about that. Do you think a visit to the nutritionist might be a good idea before you start going back to food? You not drinking water for a month kinda concerns me alot.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/21/2010 3:50 PM (GMT -7)   
... So why fret yourself, Debilitated? If your doctor is watching over you so carefully, I'm thinking s/he'll detect any problems fairly quickly, and will help you to correct it.

Do you have someone (doctor? nurse?) you can call if you get concerned? If so, do you have 24hr help and advice available, or only during business hours?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 5/21/2010 3:53 PM (GMT -7)   
Homecare nurse comes once a week to draw blood and check up.

Im not worried about my fluid intake, and I AM allowed to eat.
Im worried about my Heart rate.. It has been better since i am a little more hydrated..

but just last month i was walking around no problem. yes with a walker because of my back..
but now its like i stand up and its 140-160 and im real tired..

Not sure why. Im pretty sure ive gained weight from the TPN.

maybe i never knew my Heart rate then? Now i do since i have a watch moniter?
I dunno.

ECHO shows a very healthy heart. just tired, fatigued and rapid heart rate with exercise.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Currently:, Entocort EC, Vitamin D, Fentanyl 12mcg / 72hrs, TPN, Cardizem
Currently On SSDI


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/21/2010 4:00 PM (GMT -7)   
So you're talking to us because you really don't have access to someone you can regularly call on for support and advice there?

I just worry, Debilitated, because you're asking us very technical and specialised questions, and we're really not equipped to deal with such questions at HealingWell. We're amateurs here, and I worry that you may be led astray and may even do yourself damage if you seek your answers online.

Is there some sort of free medical hotline you can call? We have one of those here: you ring in, describe your symptoms, and they tell you whether you need to worry / go to a hospital / get some OTC medicine or not.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

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