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Crohn's Disease Forum » General IBD Discussion » Am I stuck with feeling tired 24/7?


08-29-2011, 01:57 AM   #1
Linnie
 
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Am I stuck with feeling tired 24/7?

Ok, ive been diagnosed with Crohns for 12 years, I dont take any medication and I am virtually symptom free except that I am always tired, it has gotten steadily worse for the last 5 or so years. I exercise, eat very healthy, I sleep properly, I dont suffer from stress, I am not depressed and all my blood tests come back normal.

My GP decided that she would hand me over to a gastroenterologist as she was stumped at what to do next, so I head over and she feels around my stomach and decides that a colonoscopy is on the cards... $700 later and no active Crohns is found.

I am due to go and see her about the results next Friday but I am afraid that if she is stumped as well that I might flip out.

I am now seriously considering going back on some sort of medication that can perk me up because I am living every day like I have run a marathon and I just want to bounce out of bed in the mornings and get excited about life again.

Has anyone has any success with fatigue through meds or otherwise? I would love any advice as this is really starting to get me down
08-29-2011, 05:38 AM   #2
DustyKat
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Where is your crohns located?

Do you take supplements, B12 injections?

When did you last have bloods taken for B12, folate and iron stores?

Sorry for all the questions!

Dusty. xxx
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08-29-2011, 05:50 AM   #3
scottmyster
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HI Linie, dusykat is right i know you had blood work done. did they check you for iron levels? and vitamin B12? you might think of taking vitamin supplements like B100 complex and centrum or any other vitamins that are powerful to keep you from depleting them. You might need to extra B12 shots to keep your energy levels up. Tell your doctor about all the fatigue your having and he may make some adjustments levels.best wishes

scott
08-29-2011, 05:53 AM   #4
Linnie
 
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I had a perferation back on 99' where I got the part where the small intestine joins the large one, so around that area.

I've been taking multi vitamins everyday for years and I get a B12 once a year but all blood tests show nothing low, I'm thinking maybe celiac but I'm showing no other symptoms
08-29-2011, 09:50 PM   #5
David
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I had a perferation back on 99' where I got the part where the small intestine joins the large one, so around that area.

I've been taking multi vitamins everyday for years and I get a B12 once a year but all blood tests show nothing low, I'm thinking maybe celiac but I'm showing no other symptoms
That part would be your terminal ileum. It's also the part where your body absorbs vitamin B12.

1. The common blood tests can all come back normal and you can still be B12 deficient.

2. One B12 injection per year is nowhere near enough.

3. Demand that your Serum Homocysteine and Methylmalonic acid levels be checked. THIS is the best and most accurate way to determine B12 deficiency. Write down those names and take them to your next doctor visit.

Good luck!
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08-29-2011, 10:02 PM   #6
sunflower
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Wow! They removed your terminal ileum and they are not giving you B12 injections?? I would say that you would benefit greatly from those. Do what David suggests. I have never heard of those blood tests, but if he says so it must be right! He has been studying.

They also have meds to help with the fatigue. You dont' NEED to go on Crohn's meds if you don't have any active disease, though most of us stay on it for life I think. The colonoscopy does not check for disease in the small bowel - are they planning to check there? Bloodwork is not always an indication of disease or well being. Many of us are walking proof of that. My inflammation levels and blood work were normal but I had a stricture that was close to needing surgery.
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08-29-2011, 10:55 PM   #7
archie
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Hi I had the same surgery as you and my blood tests show I'm not vit b12 deficient at 260. I'm not convinced its not deficient slightly as I think my level is prob lower than what it used to be. I too am more tired than I used to be but exercise regularly etc to try and help. I take OTC vit B12 daily (1000ng) which I find help a lot. It might be worth getting your level checked again as it can take years to become deficient. Hope you get some answers soon
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08-30-2011, 03:55 AM   #8
David
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Hi I had the same surgery as you and my blood tests show I'm not vit b12 deficient at 260. I'm not convinced its not deficient slightly as I think my level is prob lower than what it used to be. I too am more tired than I used to be but exercise regularly etc to try and help.
In Japan, you would be considered deficient as they raised their minimum from 200 pg/ml to to 550 pg/ml. The problem is, many people experience deficiency symptoms at rates higher than "normal" but doctors do serum B12 levels which come back "normal" and therefore think nothing of it.

That's why I suggested the Serum Homocysteine and Methylmalonic acid tests above as serum B12 tests may not be sensitive enough. In this study it was shown that increased Serum Homocysteine and Methylmalonic acid levels are great markers for deficiency. If your body is deficient, no matter your serum B12 level, Serum Homocysteine and Methylmalonic acid levels will increase.
08-30-2011, 07:40 AM   #9
sunflower
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Thanks for the links to the studies. Those are helpful for doctors to understand why we would ask for more testing.
08-30-2011, 01:01 PM   #10
archie
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Thanks David I always thought mine was lower than what it used to be so I must get it checked again some stage I'd have to stop taking my OTC vit for a while though to get a true reading... Or move to Japan!!!
08-31-2011, 01:34 AM   #11
mikeyarmo
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As per the thread I recently started about my Crohn's Disease Mouth Rash I think I may be B12 deficient as well due to a resection of my terminal ilieum approximately 5 years ago.

Will look into injecting myself ASAP and will post any changes I experience.
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