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Regular Member

Date Joined Oct 2008
Total Posts : 79
   Posted 6/23/2009 8:36 PM (GMT -7)   
does anyone know why crohn's causes you to be so tired? my iron levels are fine and i'm not deficient in any vitamins or minerals from what my blood tests show but i'm still just so tired! no one seems to understand why? does anyone else feel this way? my crohn's is mild and it's not active at the moment so shouldn't i be feeling better? i sometimes think it's all in my head =(

Regular Member

Date Joined Apr 2008
Total Posts : 289
   Posted 6/23/2009 9:05 PM (GMT -7)   
I think we can have difficulty with proper nutrition absorption, which certainly can unbalance things and make us fatigued. In addition, when I am even in a mild flare, I do not get very good REST/SLEEP and that absolutely affects my energy levels.
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry......I'd much rather laugh.
2001 Dx'd with UC.  (asacol, hi-doses pred, colazol, 6MP=jaundice, remicade)  No remission. 
5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's. 
Changed maintenance med to Methotrexate (MTX) and am remaining manageable with 2tabs Immodium and a probiotic capsule every 12hrs.

The Immune Queen
New Member

Date Joined Jun 2009
Total Posts : 1
   Posted 6/23/2009 10:40 PM (GMT -7)   
VERY many people with Crohn's disease also suffer from some co conditions that you may not be aware that you have. Research shows that many people with Crohn's also have one or more of the following:

Increased Intestinal Permeabiltiy, also called 'leaky gut syndrome'
Parasites like giardia or blastocystic hominis
Bacteria like H pylori
Gut Dysbiosis- a condition where the ratio of 'good' to 'bad' bacteria is dysregulated
Candida Overgrowth infection
Heavy Metal Toxicity

You also could have food intolerances like Gluten Sensitivity- which could likely be part of the reason that you have Crohn's in the first place.

You might also want to get your B 12 level done. This is a very common, but often overlooked problem.

Kerri Knox, RN
Functional Medicine Practitioner
Removed your website from your post as it is not allowed.

Post Edited By Moderator (Nanners) : 6/24/2009 7:03:54 AM (GMT-6)

Regular Member

Date Joined Oct 2008
Total Posts : 79
   Posted 6/23/2009 11:23 PM (GMT -7)   
thanks for that. i do have fructose malabosprtion but my B 12 levels are fine. i don't know about the gluten sensitivity though. i don't have coeliac disease, i carry the gene but i'm pretty sure i am fine with gluten? i dunno, it's all pretyy confusing hey?!

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 6/24/2009 1:01 AM (GMT -7)   
Yeah, tired kills me sometimes. My head wants to go out and play but the rest off me can't move. It's at least as frustrating as the pain stuff for me.

I know the body is just fight it self and the war is exhausting. Lots of time I don't sleep well and that makes for tired days.

Veteran Member

Date Joined Dec 2008
Total Posts : 947
   Posted 6/24/2009 4:04 AM (GMT -7)   
I thinkit is because our immune system is constantly in overdrive and it never gets any rest.It just wears our bodies down.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Precription Folic Acid, Multivitamin, 1000mg Calcium, Vitamin D, Probiotics,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/24/2009 6:05 AM (GMT -7)   
I too am in remission at the moment gut wise, but my fatigue is always there. So you are not alone.

Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and 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"*

Veteran Member

Date Joined Oct 2004
Total Posts : 2088
   Posted 6/26/2009 12:25 PM (GMT -7)   
You may well have been told that your B12 levels are fine Kiki, but the Mayo clinic did a study a while back, which sadly is not widely known about by GIs.
They looked at symptoms of B12 deficiency in a group of patients, scored them on a scale as to whether or not they had clinical or subclinical deficiency, and then looked at the blood levels. What they found was that the diagnosis of clinical deficiency using symptoms was different to that using blood levels; where blood levels were considered normal, very often there would be subclinical if not full clinical signs of deficiency. (Subclinical means some of the symptoms rather than the majority, or I think maybe sporadic symptoms.)
Typically, the low end of "normal" in real life translated into "deficient". If I had a pound for every time a Crohnie on this forum has complained of symptoms of B12 deficiency having been told that his/her B12 levels are normal/ a little low/ on the low side of normal... Boy, I'd be rich !
nono The moral of the story is, don't trust a comparative scale that has not been revised in over half a century, when in that field every other definition of recommended daily amount has changed umpteen times. It was created a long time ago, didn't use a lot of patient data, and everyone has just treated it as gospel ever since because no-one had a better idea. Well, now the Mayo knows better, and their GIs routinely adjust for its known failings. Given twenty years, maybe the rest of their profession will have woken up to it. eyes
Me, I take a B12 sublingual daily, and I know it helps; other things like iron levels need to be okay to remove fatigue, and I have found that B5 helps me get rid of that "running up a hill all the time" feeling, but B12 is a must have for me at least.
Don't worry that it is all in your head. If medical testing was that perfect, we'd all be cured. smilewinkgrin
There is an old medical saying: "Listen to the patient, (s)he is telling you what the disease is." If you say you are feeling tired, and there is no reason why you would suddenly give up a healthy active life - then if the tests show nothing, they show only that they are themselves deficient. How well you feel and function is the acid test, not some chemical blot on litmus paper. yeah

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 6/26/2009 1:10 PM (GMT -7)   
There are several causes of fatigue in Crohn's. The most common is the inflammation that the immune system sets up in your gut during a flare. It is just the same as having the flu fatigue-wise. Then there is the increase in IgE - the immune globulin which triggers a response to foreign proteins. It most commonly is associated with allergies, but it also sensitizes the immune system to bacteria and parasites. Crohn's results in elevated IgE in the blood, so it likely results in a feeling of having an allergy as well.

The most common deficiencies that cause fatigue are B12 and iron, but it is less well known that vitamin D deficiency will make you tired. Vitamin D deficiency is much more common than formerly thought and it is not usually checked for in the routine blood work ordered. Lack of it will depress the immune system as well, leaving you prone to minor colds and flu. Vitamin D is absorbed in the small intestine and if that is inflamed, absorption is impaired.

Then too there is the possibility of other related problems like liver inflammation. That eventually results in liver pain and gallbladder problems, but it can cause fatigue as well.

Guilty Party
New Member

Date Joined May 2009
Total Posts : 18
   Posted 6/27/2009 3:49 AM (GMT -7)   
when you spend most of the day on the toilet its pretty obvious we aint absorbing all we need and are losing a lot of what we put in so its an "occupational hazard" i guess.

Should i be on b12 supplemaent of some sort then? Im currently on an iron supplement three times a day and currently taking 20mg of pred a day but should be starting to taper off in the next few weeks after 2 months of the stuff. Im always tired in my body. Cant believe the change in my energy levels over the past 6 months i used to be so active and always out and about (mainly socialising and drinking) but these days im mainly most comfortable sitting around on the couch chilling.

The only fun i get is a few hours once i neck a coupple of co-codamol to ease the pain and get stuff done...

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 6/27/2009 10:56 AM (GMT -7)   
When I went to check in with my GI last month and told him I was not feeling as well as I had been last year. Just basically an increase in symptoms and really tired and run down. The first thing he asked was if I could be depressed because my daughter had gone off to college last fall? NO. I have more pain! Just because all my blood work is good, I must be depressed because I'm an empty nester. Except, I'm not because my daughter hates the dorm and was home every weekend and at least one night a week. At least I know I"m not crazy.

I know that anything I take in goes through me rapidly so any vitamins I take I take double just to make sure I get enough, but still I am just tired all the time. So I guess I will have to get used to needing naps again. The B6 supplements had been helping for about 10 years, but they don't seem to be doing the trick anymore.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 6/27/2009 1:40 PM (GMT -7)   
Don't you just love that? THEY can't figure out what the problem is, so it must be all in your head... How many times have I heard people say that their doctor doesn't listen to them? Whenever you don't fit into their slots/categories, you get ignored in some way.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 6/27/2009 2:11 PM (GMT -7)   
And Come back in a month if you don't feel better! Lets see, you aren't giving me anything to change the situation, I've felt this way for 6+ months, what's going to change in the next month? Um, nothing.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 6/27/2009 2:36 PM (GMT -7)   
I dunno how much this will help you, but make sure you are drinking alot of fluids, water is important.

You may be getting close to dehydration a bit, which will make you fatigued.

It's proably a bigger picture with many things going on too, as others have suggested.
CD dx @ 13 (1987)
Prednisone 20mg every other day
Phenergen PRN
Zantac 150 - Twice Day
Pain Meds

Veteran Member

Date Joined May 2009
Total Posts : 703
   Posted 6/27/2009 5:48 PM (GMT -7)   
So Vitamin B (12?) shots help? I take a daily multi-vitamin (which my GE was indifferent about--said just eat healthy). Since I got Crohn's I get what feels like "deathly tired" where I seriously feel next to death--so absolutely fatigued I can't do anything but nap and feel really terrible. But after about an hour or two nap I feel better. Where can I get vitamin B shots? Are they prescription?

Regular Member

Date Joined Feb 2009
Total Posts : 350
   Posted 6/27/2009 6:28 PM (GMT -7)   
b12 made a HUGE difference for me. If you want to try it without the shots, you can google entopic b-12 cream -- it's perscription free! I used that for a year, then decided the shots were a lot easier every 2-3 weeks. Shots have to be prescribed. I both have needles at home and get it when I go to my doc. the entopic was great, but the cream would last about 3 months and then start to decline in potency and it was a pain in the assets to reorder all the time. My totally healthy 80yo mom uses it still, i started her on it after reading articles about how deficient most of the geriatric population is, the cream works for her, but she just starts doubling the dose after a few months (one 15 buck cream lasts a loooong time)..... but my needs are more than hers, she's got a healthy GI tract so she also eats foods that have it. I don't right now.

Also, for whatever it worth, LDN has changed my life energy wise. I never in my entire life for health reasons had a lack of fatigue. SInce the first week, I've had the greatest energy levels ever. and it's been 2 months, waking up and feeling the same way. Not like I'm on speed. Just normal. It's amazing.
strictures, crohn's, adhesions, endo. Pyoderma Gangrenosum.
LDN 4mg ~ Boswellia Serrata ~ Olive Leaf extract ~ SCD yogurt. Using silver sulfadiazine on Pyoderma . B-12 shots. Juicing veggies!

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted 6/27/2009 10:31 PM (GMT -7)   
Forgot - the most likely culprit for people with active D is electrolyte imbalance. The salts needed are sodium (no problem) potassium (fruits and veggies) and magnesium (more likely to be a problem). I salt my food with Half Salt (a sodium/potassium chloride mix) and use a Cal/Mag supplement (citrate for better absorption). I would not suggest sports drinks because of the sugar.

Electrolyte imbalance can be life threatening. You should ask your doctor about electrolyte maintenance as an ongoing part of your treatment. I suspect that it is not on their radar, so watch out for bafflegab.

Post Edited (Keeper) : 6/27/2009 11:52:05 PM (GMT-6)

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