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Regular Member

Date Joined Dec 2005
Total Posts : 255
   Posted 5/27/2009 5:50 AM (GMT -7)   

Post Edited (loobylou) : 11/17/2013 12:21:20 PM (GMT-7)

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 5/27/2009 6:17 AM (GMT -7)   
Loobylou I am going thru much the same as you right now. I am in remission, but between the joint pain and fatigue, I am pooped out. I have been off work (vacation time) since last Friday and am due to go back to work tomorrow, and I still can't believe how exhausted I am. I think this time I am going to have to call the doc and have him run some more tests, this fatigue is bad. Just wanted to let you know you are not alone.

Gail *Nanners*
Gail*Nanners* Co-Moderator for 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, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Aug 2008
Total Posts : 63
   Posted 5/27/2009 7:48 AM (GMT -7)   
Loobylou - i am in the exact same position.
My bloods are all fine and imuran is keeping me in a nice remission but i cant shake the awful tiredness. Most days are a struggle and i cant take sick leave from work because being tired isnt exaclty an illness is it? :(
I usually sleep for about 12-14 hours a night but i still come to work shattered in the morning.
Im going to see a rheumatologist at the end of June  who i am hoping can give me some answers as to why i am always so tired.
Like you i also have joint and stiffness issues.
Diagnosed April 2008
Currently on Imuran 150, Calcium, folic acid & B12
Currently being tested for RA
Was on Prednisolone for 10mths

Regular Member

Date Joined Apr 2006
Total Posts : 192
   Posted 5/27/2009 9:41 AM (GMT -7)   
I'm this way too. So tired, and not wanting to do anything as my life passes me by. I wonder if I'm depressed, and that's why I'm tired. I mean I'm not exactly happy. Does anyone else feel maybe they are depressed?

Regular Member

Date Joined May 2004
Total Posts : 362
   Posted 5/27/2009 11:34 AM (GMT -7)   
It's a shame that Fatigue is not listed as an official "symptom" of Crohns, because it sure is!

I remember several years ago I was so very tired I was sleeping 18 hours a day, talk about watching your life go by (or not watching actually LOL). Anyway after numerous blood tests, colonoscopies etc etc they basically said that yes I was sick, but that there was no reason for such extreme fatigue, and perhaps I was depressed? So I started anti-depressants and surprise, surprise it didn't help the fatigue at all. It did help with the day to day coping of being in pain and being sick all the time, as well as increasing my pain threshhold, but I still needed boat loads of sleep.

Then I got a new GP. She checked my vitamin B-12 levels. My levels were 1% of normal, at levels this low you can go insane, and then die. I got injections immediately in the office and then every day for a couple weeks, then every week, and lastly every month which is were I am now. When the disease is in your terminal ilium (the junction between the small and large intestines) your body can't absorb B-12 at all. You will also have trouble absorbing other fat soluble vitamins, but B-12 isn't absorbed anywhere else in the body. So you may be getting all kinds of it, but it's just going right through you. The condition is called Pernicious anemia. Some other symptoms are hair loss, muscle and nerve problems and noticeable memory problems. While the terminal ilium is the most common reason, chronic gastritis can also cause it because you no longer have enough "intrinsic factor" that's the stuff that breaks down B vitamins into a form your body can use.

What really surprised me though was the it's not a test that doctors routinely do. Since B-12 is so common in foods not very many people have issues with it. As well B-12 is stored in your liver and a normal body will store enough of it to last for as long as 4 years before not having enough to keep you healthy.

The point of my long story, is that you have to ask your doctor to check it specifically. When they send you for a "blood panel" which most doctors do, it's not on the list, thus you end up looking fine to them, but there missing it all together.

If you do have low B-12 you should also take Folic Acid supplements since low B-12 can mimic a Folic Acid deficiency and visa versa.

I hope your feeling better soon,


Veteran Member

Date Joined Dec 2005
Total Posts : 637
   Posted 5/27/2009 4:37 PM (GMT -7)   
I have had low B12 levels. I had my ti removed when I was 15. I started taking B12 injections a year ago, maybe two years, not sure, but currently 35. Alot of the reason was this forum, and how well it made others feel, otherwise I doubt any doctor would have tried to get me into them.

Yha, 18,19 something years with NO TI, so you know I was low on the stuff.

Yet I have seen many g.i. docs. NONE, not a single ONE ever mentioned B12. Every single one asked me about surgeries, how many, when, etc, but they just failed at something so simple.

Really, I just don't understand. B12 injections are FRIGGN CHEAP. A whole bottle of the stuff, 10 shots, is like 15$ at the pharmacy, and that is cash price, no insurance, as insurance doesn't seem to cover it. Which also makes sense, something so cheap could be used instead of trying expensive meds first, but who does that benefit...

Then again, maybe that is the problem. How is a doctor gonna make money on a B12 shot that actually cures, it actually fixes your fatigue.

Look after your own self first. If you think you may need B12, go for it. It will not hurt you, and I would be highly surprised if a doctor picks up on this for you.
CD dx @ 13 (1987)
Prednisone 20mg every other day
Phenergen PRN
Zantac 150 - Twice Day
Pain Meds

Regular Member

Date Joined Feb 2009
Total Posts : 350
   Posted 5/27/2009 5:03 PM (GMT -7)   
I totally second the b-12, you can get:
- cream for your skin (entopic brand, works great)
- sublingual
and more...

RX: you can get shots!

I never test low, but I know exactly when I need it, so go figure. You'll feel a difference in a day or two.

I would also like to add IRON, again I never test super low, but I can tell when I'm low. I use a food based one (Blood builder brand) which has no side effects, even at a double dose.

Over the years, I've learned which fatigue I have and supplement accordingly. if I were smarter, I'd just take it all the time. Neither of this things will hurt you to take at normal doses. Add them and see how you feel. Crohn's folks really suffer both with diet and mal absorption, it's realy a shame docs don't focus more on this for folks and go off tests instead of just suggesting to try it. It's so much easier to catch up on them if you're not in the "red zone" on a test, and so much faster to feel better!! either way, I hope you give it a try.
strictures, crohn's, adhesions, endo. fighting Pyoderma G., ridding myself of candida.
just started on LDN ~ allergic to pentasa and 5ASA's. I'm taking Boswellia Serrata (works!) Just came off Xifaxan. Making 24 hour yogurt (FUN!) Using Olive leaf liquid extract for candida, and using cromolyn sodium on PG.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 5/28/2009 4:51 AM (GMT -7)   
I'm in the fatigue boat too. Just not feeling as well as I did a year or so ago, but all my tests show that things are "fine" according to my doctor. So what to do? I've seen both my GI's and they think I can just hum along like I am, but I don't want to, I am missing out on things. But, really, can we beg to be treated. I'm actually leaving on a mini vacation with friends today and feel like crap. I have been looking forward to this for a year since we started planning this, and now all I can think about is if I will be able to keep up and not ruin the trip for everyone else. I've packed my spare prednisone just in case things get really bad. But I really wish that the doctors would listen to us instead of focusing so much on the test results. If we are telling them we don't feel right and that things are going downhill, then they need to start doing something before it turns into a more major flare. Rant done, off to have fun, I hope.

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.....

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