B-12 and crohn's

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name
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 5/30/2010 10:38 PM (GMT -7)   
Hello all, I've been doing B12 injections since October '09. My primary care doctor said it was a good idea to start it and now he's telling me "what's this crap you hear about B12" saying there is no scientific evidence that B12 injections help with anything much less Crohn's, then mentioned that I'm doing better only because of the Humira and it has nothing to do with the B12...

Basically, I'm looking for scientific evidence that B12 has helped with the energy demands of Crohn's patients among other things like... i don't know.. RBC counts?
Any sites i can visit?

Thanks for your help.

Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 5/30/2010 11:09 PM (GMT -7)   
Google!
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks,5-asa Asacol, Entocort, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk,  Imuran and Prednisone in the past.


*Bibi*
Regular Member


Date Joined Mar 2010
Total Posts : 49
   Posted 5/30/2010 11:24 PM (GMT -7)   
Do you have your bloodwork monitored to make sure you aren't B12 deficient. That is the only reason they have me on B12.
Diagnosed at 17, currently 23 :)  Have had 1 resection so far.  It's been an adventure!

Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 5/30/2010 11:40 PM (GMT -7)   
I have blood work done which says I have a deficiency in B12, and also B12 is supposed to help with absorption of other vitamins and also I was getting extremely itchy, and the B12 injectiona have actually helped with this.
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


name
New Member


Date Joined Sep 2009
Total Posts : 5
   Posted 5/31/2010 12:17 AM (GMT -7)   
BAH! I posted this new thread... sorry bout the "name" thing. I'm elizabeth.

I've had one CBC done recently to check blood levels. I don't even know for sure if B12 levels are checked in a CBC-- but whatever was checked was normal. I don't really know what to do. My primary care doctor doesn't seem to care much for monitoring me and I don't know when to do what seeing as I don't get any feedback or added information from him.

I started the B-12 because I thought I had pernicious anemia or some form of anemia. VERY Pallor pale. Even with sun exposure and tanning bed exposure to try to help it. So the B12 seemed to help give me back normal color. But since then, Dr. Doesn'tgiveahoot says I don't need to take it. I'm all about following doctor's orders, but I'm afraid stopping the B12 will only lead me to a less healthy state.

Does anyone know if B12 injections are detrimental in any way?
_______________________________________________________________________

CD dx'd August '09 was in denial for quite a few years about being sick. It took a lot of crap to find out why and how to treat it! And now I feel as if I'm getting criticized for it. Tired of the mad max BS.
Humira
Prednisone
Tylenol w/ Codiene
B-12 injection once every 3 weeks

Post Edited (name) : 5/31/2010 1:23:08 AM (GMT-6)


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 5/31/2010 1:50 AM (GMT -7)   
No I dont think B12 injections are detrimental, but sounds to me like you need another doctor!!! He should be monitoring you and should give a hoot about your condition and should be trying to help you. I am anaemic too, due to thyroid probalems and probably the crohns too, and am on iron tablets.
Has the doctor tested your iron levels and if they are low started you iron tablets or iron of any form???
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/31/2010 6:54 AM (GMT -7)   
I suggest you specifically request for a B12 blood test, that would show if you are low or not. Have you ever had a resection for your Crohns yet? If so, and your terminal ileum removed like I have, you need B12 shots as you no longer have the area that absorbs B12. I get B12 shots every 2 weeks, and I can tell that its time for another by the end of the 2 weeks. Also, are you taking Vitamin D3? This is the sunshine vitamin. They are finding even healthy people are low on this vitamin. You might ask to be tested for that too, as I am borderline anemic myself.

And how come you are going to your family doc for your Crohns? You should be dealing with a GI for your Crohns. Good luck!
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"*

nitat
Regular Member


Date Joined Jan 2006
Total Posts : 79
   Posted 5/31/2010 9:40 AM (GMT -7)   
I too have pernicious anemia. If the condition is not treated, it can result in permanent nerve damage. One symptom I had was tingling in the hands, fingers and my feet. My doctor explained it as in some Crohns patients, the ability to absorb B12 is not there because of a missing intrensic (spelling) factor in the stomach. I went through then what was known as the Schillings test. I think today they have different tests. I take shots once a month, and have had no problems. If you have the Pernicious anemia, that is what the b12 shots are for. Energy is just a by-product. The shots abe beacuse you can't absorb b12 any other way. Hope this helps, as this is just my story.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8556
   Posted 5/31/2010 10:23 AM (GMT -7)   
I second going to a GI instead of a family doc for Crohn's. My GP doesn't know a thing. I've been seeing him for three years and a few weeks ago he mentioned my "ulcerative colitis" in the context of a conversation about possible colon surgery. I was like, "I have Crohn's" confused He was like, "Oh" skull Nice man, but, god, I don't think I'd have ever been diagnosed if he'd been my doctor 11 years ago.

Speaking of B12, I would request a blood test. I've never had B12 mentioned once to me, even though I've had iron-deficiency anaemia for years and am being referred to a haematologist (again). It wouldn't remotely surprise me if my referral has been lost within the system, in which case, if it has, I will have to chase that up. And when I do finally get to see a haematologist I am going to request a B12 blood test. I could ask my GP but I don't trust him to get the results right!

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 5/31/2010 4:37 PM (GMT -7)   
I agree with everyone on this. Ask for a B-12 test to see what your levels are. My GI Doc did this for me along with a full CBC and he checked my vitamin D. Mine were all normal but I have issues with being a little tired. This is due to my anemia. So having normal B-12 is not helping with that. I think B-12 shots are a waste of time and money IF you are just doing it for energy and your vitamin B-12 is normal. I had B-12 shots before and they never did anything for me even before I had issues with Crohns. However if you are deficient that is another matter and B-12 shots would need to be looked into. It is so weird how I read people on the board having issues getting drs to check levels of stuff and order tests when I have a GP and GI often ordering the same thing a week apart or so and I have to tell them to get the records from each other so we are not making insurance pay for unecessary stuff. I need to stop complaining about all the tests they want me to have. I guess I should enjoy the attention! :-)
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/2/2010 1:56 PM (GMT -7)   
Sounds like you need a specialist who really "gets it" about Crohn's.
 
As others have said, you have to ask for a B12 blood test, because it is not routinely included in other tests. You can check www.labtestsonline.org for info on B12 and other tests.
 
My daughter's own B12 tests showed that, over time, she was unable to absorb enough B12 no matter how high the dosage, so she started getting monthly shots. The lab tests show the shots have boosted her B12.  
 
The Crohn's and Colitis Foundation says the following on its web site about the need for B12 shots: http://www.ccfa.org/info/diet?LMI=4.2 
 
"...vitamin B-12 is absorbed in the lower ileum. That means that people who have ileitis (Crohn's disease that affects the ileum) or those who have undergone small bowel surgery may have a vitamin B-12 deficiency because they are unable to absorb enough of this vitamin from their diet or from oral supplements. To correct this deficiency (which can be determined by measuring the amount of this vitamin in the blood), a monthly intramuscular injection of vitamin B-12 may be required."
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 6/3/2010 7:06 AM (GMT -7)   
I get a B12 shot from time to time but its not on a regular basis. I dont feel any different other than the pain in my B hind .
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 6/3/2010 7:31 AM (GMT -7)   
I get a montly shot because in 1982 I had my terminal ileum removed and that is where b-12 is absorbed. about 3 years ago, my NEW gastro checked my levels and found me to be deficient so I've been doing shots. IMHO they do help, also I was having a "nervous twitch" in my neck prior to starting -- that went away almost immediatedly. Just my 2 cents.
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/4/2010 6:45 AM (GMT -7)   
Btw, by the time you start to feel symptoms from B12 deficiency, it's already late. So it's possible you might not feel any difference after getting a shot - this is a good thing, as if you do see a difference, it means your body has already suffered some damage from B12 deficiency.  You need to start supplementing long before this happens, because without enough B12 the body can suffer  nerve damage. Your brain needs it, too. 
 
If there is any doubt whether you need the shots, B12 lab results can let you know a) whether you are deficient b) whether oral supplements are enough c) whether you need shots. For instance, if an initial B12 lab test shows you are below 400 and then you try oral supplements for about a month or so, you can have another lab test done to see whether your B12 has risen. If it hasn't risen enough, or at all, you could try a higher oral supplement or simply go for the shot.
 
Most docs, unlike specialists (in the US, called endocrinologists), don't understand that B12 should not be below 400, and that optimal B12 should be above 500. At 300, B12 deficiency can be presumed to exist. (The laboratories can be very misleading to docs, as sometimes they say the lower limit of the "normal" range is 239 - as any good endocrinologist knows, this level is not enough.)
 
At one time, B12 shots were all the rage, and people swore they got instant energy from them - docs who remember this fad might be skeptical. But a fad should not be confused with a Crohns patient's legitimate need for B12 due to what we know, by know, is well documented - the effects of the disease on the terminal ileum's ability to absorb enough B12. Not every Crohn's patient needs B12 shots, but the ones who do, need all the support docs can give them.

Post Edited (njmom) : 6/4/2010 7:49:18 AM (GMT-6)


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 6/4/2010 8:22 AM (GMT -7)   
Not sure why I'm stilled amazed when I read a post from someone living with crohns not being cared for by a bpard certified GI (preferrably at a teaching hospital) but I am.  By all means get a B12 level - no, it's not part of routine blood work.  Also, I request a copy of all blood tests I receive so that I can fax them myself to my GI/primary/rheumotologist and know that they got them. 
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