Need advice on low energy with ileostomy - vitamins or blood work?

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cwr38001
May 20, 2022 8:16 pm

I've had my ileostomy (Permanent) for two years and I did well until several months ago.  I have no energy to do normal stuff like I always do.  Of course since I am 70 I know

I've slowed down due to age but dang.   Do ya'll take vitamins,  or potassium...should I go get some blood work.  All I want to do somedays is sleep. Thanks for any input.

 

Past Member
May 20, 2022 9:09 pm

Hi cwr38001, I would definitely get some bloodwork done. You should not have that level of tiredness. Good luck. 💗

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Justbreathe
May 20, 2022 9:34 pm

I agree with SallyK. Start with blood test and urine test and then consult your doctor.  

Then use your own good judgement because you are the only one who truly know your body.  

Eat as healthy as you can

Chew, Chew, Chew

Drink lots of water (easier said than done for sure)

Try to get 8 hours of sleep

Exercise a little if you can

Get as many laughs as you can each day

Keep smilin’

check out this website for valuable input

A doc will charge you $150 for this advice  - they do it here for free 😉

Best wishes to you

 

 

Rose Bud 🌹
May 20, 2022 10:01 pm

Definitely get the blood work done and make sure you are drinking plenty of water!!! MORE than just 8 glasses.I learned the hard way and started having kidney issues.I drink 100 oz a day BUT check with your doctor on what they recommend for you.I had the same thing happened to me and I've only had my ileostomy for 2 years ..so it's been learn as I go.All I wanted to do was sleep most of the day. AND chopped it up to having diabetes. Once I had full blood work done I was low on B12 and vitamin D3 and I have a hard time absorbing potassium. (Which isn't a good thing) After about a mth of taking the supplements(recommended by my doctor)I noticed a difference. My kidneys are slowly improving and I'm stable with the potassium now and don't feel so sluggish anymore!!! Best of Luck!!!

lovely
May 21, 2022 4:31 am

I agree with getting blood work done. I have no energy and have to make myself get up from my recliner. I found out I am diabetic, my iron and palettes are low.  Each one of these saps your energy. Best wishes

 

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Meadow Snow
May 21, 2022 11:43 am
Reply to Rose Bud 🌹

I leaned a few days ago thanks to Maggie from LetsTalkIBD, and her latest YouTube video about short bowel syndrome, that the terminal ileum (that is to say, the very last part of the small intestine) is the part that absorbs the most B12. So because I had the j-pouch and then had that reversed, that would’ve removed some of my terminal ileum. Now Ive learned thanks to MaO if I ever start feeling extremely tired and lethargic all the time for no apparent reason, that’s when I get my B12 checked out. 

Edit: oh, and to crw38001 - best of luck figuring this out, hope you start feeling OK soon 😘

Justbreathe
May 21, 2022 1:36 pm
Reply to Meadow Snow

I have been taking B12 for years (mostly because someone told me if you like your adult beverages you need B12 😂) and I did like my adult beverages!  Initially I took B12 tablets but recently discovered that ole’ Seymour (my stoma) will spit them out whole!  As a result, I take sublingual B12 and have been investigating as to where vitamins are actually processed in the body.  Somewhere, I read that one vitamin is actually processed in the colon.  Since my colon has been “inactive” for almost 2 years now I think this info is crucial and I wonder how many docs remember this when prescribing drugs to Ostomates?

Past Member
May 21, 2022 1:39 pm
Reply to Justbreathe

How much B12 do you take? I also take sublingual B12. Just not sure how much to take though. 🤔

Justbreathe
May 21, 2022 1:48 pm

I take 1000 mcg a day - not even sure if this is the right dosage.  For an old broad (with a belly bag)  I feel relatively healthy so hate making any changes until need be - recently I have started reading about  NAC little initials with multiple syllablabbillical (lol) meanings - bottom line is, it’s some type of nutrient that big pharma does not want us to know about (hearsay).  I say if someone doesn’t want me to know, I MUST KNOW!!!
 KNOW❗️❗️❗️ 
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Past Member
May 21, 2022 1:49 pm
Reply to Justbreathe

Oooo keep me up to date on that please. 😍

Beth22
May 21, 2022 3:34 pm

I agree with everyone get blood work.  

What helps me with getting all nutrition and vitamins.. I take adult liquid vitamins. I drink breakfast essentials (it's loaded with nutrition and vitamins) and will drink drip drop(oral hydration solution) on top of my water intake.  I hope this helps and I hope you feel better

cavadadad
May 23, 2022 2:56 am

I agree with the others. Have blood work checked for sure. When I'm feeling drained my B12 is almost always low. 

I'm 52 and I've had a permanent ileostomy for 5 years now and I'm always learning something new about my condition. 

gkmcgill
May 23, 2022 2:16 pm

I have had my ileostomy for about 14 years now.  Yes get your blood work done and a least see what you need.  I am on no medications at 64 and have been so thankful for that!   I started my own regimen of vitamins after researching and hearing stories like yours.   Of course always get gel caps or gummies so you can retain them. Or capsules that dissolve fast.   My main go to vitamins are B12 , D3, Magnesium, and others that fit my needs.   After starting these 5-6 years ago I feel my energy and body has definitely made a  positive change!   Hope you find what works for you!!!  

Newbie Dana
May 23, 2022 7:35 pm

One of the many strangenesses of my condition ever since chemo is for my B vitamin levels (especially 12 and 6) to be HIGH, not low, and to have some fairly significant side effects on my eyes because of it. Not only can I not take B12 or B6 supplements, I ended up not even taking a multivitamin any more. Took several months to come back down into the normal range (they were over twice the high limit for normal taking smaller supplements than mentioned above). Why I was taking them in the first place was they were mentioned as an aid to my neuropathy. Shocked a lot of doctors who didn't expect my reaction when we finally tracked down the cause. So the only thing I say is keep track of your levels if you're going onto a supplement, and best of luck to you. I hope the supplements help your tiredness. Also check your Iron levels.

iMacG5
May 23, 2022 9:32 pm

Hi CWR.  Sorry you feel like you do but I think you've gotten some good advice from the kind folks here.  I'm just wondering if you've gotten the Covid vaccine and boosters and if there's any timewise connection between them and your energy.

Respectfully,

Mike

AlexT
May 23, 2022 9:38 pm

A sugar free white Monster does a body good. 

NewlifeVictoria
Jun 15, 2022 2:04 pm
Reply to Justbreathe

Just Breathe ,Your so right I wish I can follow all that stuff and make it.  A MUST DO Every day! Because your giving good advice and everyone does that and I know we’re all different and have many stories! 
This has been a lot and a big journey and I bet everyone can say this but I think with what everyone says they do put it all together and do what you can for YOU 

Here’s a story,

I can’t eat much with out a problem stomach hurts and cramping and bloating etc... we all know and I also have 2 hernias

I can’t drink Milk or anything with 🧀 or  any dairy and if I do holey /Moley....  Some ..You can relate ,I’m sure...

BTW 

Check out comedy 

1.jokoy 

2.Brad Williams 

I know there’s so many and there good 😂 

Thank you just breathe for reminding me...

I hope your having a great day and feeling good! Any updates to what your doing as im

trying to figure out that to, tired no energy I think it’s from not enough water, eating different and not enough exercising! 
I know we all have different stories but what you doing theses days! 
Im also doing which I always took a vitamin but I do liquid and I’m trying to figure out what I need with it and take it Every day, I don’t do it every day because idk  ... but anyway wanted to tell you thank you For writing and reminding about how to take care of ourselves with a ostomy...

colostomy 

Ileostomy 

We all know 

Thank you so much 😊 

Victoria