very interesting video.

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lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 6/28/2009 4:52 PM (GMT -6)   
I saw an interesting video on you tube.  I really don't know how to put a link to it, maybe some of you savvy people could do it.  But check it out.  Go to Youtube and do the search words "Ulcerative Colitis B12"  It is a story about a woman about to lose her colon. 

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 6/28/2009 6:04 PM (GMT -6)   
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 6/28/2009 8:47 PM (GMT -6)   
thanks for the link.

lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 6/29/2009 6:03 PM (GMT -6)   

quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 6/29/2009 6:13 PM (GMT -6)   
vitamin B 12 is not a remedy for UC... probably the woman in the video was suffering from B 12 deficiency,. She was also on other meds which could also account for her lessening of symptoms.

we discuss vitamin B 12 often on the forum....

Strange the doctor didn't check for B12....or any of the doctors for that matter, especially since this lady was on big-gun meds.

Maybe she was at one time but had no stores for it to even register on a test...who really knows. This is a perception from the son...

But it is important for people to become proactive in their own care, and there is no reason, now-a-days, for people to claim ignorance about some stuff.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


B12SavedMyColon
New Member


Date Joined Jun 2009
Total Posts : 13
   Posted 6/30/2009 8:00 AM (GMT -6)   
quincy said...
vitamin B 12 is not a remedy for UC... probably the woman in the video was suffering from B 12 deficiency,. She was also on other meds which could also account for her lessening of symptoms.

we discuss vitamin B 12 often on the forum....

Strange the doctor didn't check for B12....or any of the doctors for that matter, especially since this lady was on big-gun meds.

Maybe she was at one time but had no stores for it to even register on a test...who really knows. This is a perception from the son...

But it is important for people to become proactive in their own care, and there is no reason, now-a-days, for people to claim ignorance about some stuff.

quincy


Hi Quincy,

Just so you know, out of all my Doctors visit and numerous colon scopes 3-5 a year it was never checked, I was told after the fact from the Doctors it is not normal for a UC patients to have a B12 deficiency, from all of the Doctors. I also was being treated at a University Hospital with a group of Doctors that never checked either. I was admitted to the University hospital with total pan colitis in July of 2006. Then I was put on heavy pednisone and Azathioprine which also (Azathioprine) failed me. I never new about B12 and UC, only the conversation was with my nurse. I was taking all forms of medications, including nightly enemas for months, suppository's 2X day, 10 asacol a day , tried increasing Remicade every to every 6 weeks with all other forms of meds and nothing worked. I am on Remicade currently @ 12 weeks for the next year with hopes to come off in the next year as I have never really responded to it either. (Once you go off you can't go back on possibly) All my labs are completely normal for the first time since I was diagnosed with UC. I also take Asacol and prenatal vitamins along with the B12. I also think it is important to know I need to maintain a higher level of B12, if I fall under the 500 range all symptoms would start coming back. It took months to regulate. I hope my story may help someone else. I also thank the person who posted my story on this site and told me about this link. I knock on wood, I have been to hell and back. I was ready to have my colon removed and not be sick anymore.


Deb
Deb,

My Video is below,

http://www.youtube.com/watch?v=wBRhvYhf8j0

Also from the web site www.UCsuccess.org, My Son is one of the Grand Prize Winners, for submitting the video in the wellness category . The winners have not posted to the site yet. Will keep you posted with up dates.

Post Edited (B12SavedMyColon) : 7/1/2009 7:00:48 AM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2009 8:06 AM (GMT -6)   
Well I tried the B-12 thing too and lost my colon. I am happy you acheived remission but feel it's probably due to your UC meds and not specifically to B-12.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


B12SavedMyColon
New Member


Date Joined Jun 2009
Total Posts : 13
   Posted 6/30/2009 8:35 AM (GMT -6)   
suebear said...
Well I tried the B-12 thing too and lost my colon. I am happy you acheived remission but feel it's probably due to your UC meds and not specifically to B-12.

Sue


Thank you for the information Sue,
I don't know how long I will be in remission, I am just thankful for the time I am. I was never stable. Did the B12 help you at all? I also suffered from many other symptoms, bleeding gums, high blood presser, inflammation of the bladder, hair loss, chronic fatigue, unexplainable, uncontrollable uterus bleed, nerve damage and a unexplainable sleep disorder in which the Dr. might believe was a neurological disorder caused from the B12 deficiency. These all happened in the past 8 years. Now all symptoms are gone. Knock on wood!

Deb

Post Edited (B12SavedMyColon) : 6/30/2009 8:38:50 AM (GMT-6)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2009 8:43 AM (GMT -6)   
B-12 helped with the overwhelming fatigue I had as a result of my stores being depelted. But it did nothing for my other UC symptoms.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Zippy123
Veteran Member


Date Joined Feb 2009
Total Posts : 735
   Posted 6/30/2009 8:57 AM (GMT -6)   
That's great Deb, to finally find something to help you so much after all them years.
At the very least people can try taking B-12 for a month or so and see what happens, it isn't like it is that expensive to try.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 6/30/2009 10:49 AM (GMT -6)   
Thanks for coming by Deb....I've had my B12 checked for years. Of course, mine is super high due to liver disease, so I can't take too much of it.

Many patients eating habits and depletion of B12 could be for various reasons, possibly before UC or from an ongoing issue not even suspected.

It's great that your UC is under control and that someone had the thought to test you for B12 deficiency.

It may be that it wouldn't directly happen from UC....but that doesn't mean that one shouldn't be checked for it considering the obvious B12 deficiency symptoms you were having.

All I can say is the doctors were lax in that issue. But, I think it's misleading to claim that B12 will get you into remission, but B12 is definitely an important vitamin that can cause all sorts of confusing symptoms.

I wish you a very long remission!!

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


B12SavedMyColon
New Member


Date Joined Jun 2009
Total Posts : 13
   Posted 6/30/2009 3:26 PM (GMT -6)   
quincy said...
Thanks for coming by Deb....I've had my B12 checked for years. Of course, mine is super high due to liver disease, so I can't take too much of it.

Many patients eating habits and depletion of B12 could be for various reasons, possibly before UC or from an ongoing issue not even suspected.

It's great that your UC is under control and that someone had the thought to test you for B12 deficiency.

It may be that it wouldn't directly happen from UC....but that doesn't mean that one shouldn't be checked for it considering the obvious B12 deficiency symptoms you were having.

All I can say is the doctors were lax in that issue. But, I think it's misleading to claim that B12 will get you into remission, but B12 is definitely an important vitamin that can cause all sorts of confusing symptoms.

I wish you a very long remission!!

quincy



Thank You!

I am just sharing my winning Celebrating UC Success story.

Maybe I am one of a kind? Maybe I will help one person...

What is normal about UC? Treatments seem to very for everyone greatly.

I am happy you have a treatment plan that is working for you!

Maybe by sharing your treatment plan it will benefit others also or even one person...

Take care and thank you for sharing your thoughts with me!

Deb

Post Edited (B12SavedMyColon) : 6/30/2009 3:31:52 PM (GMT-6)


B12SavedMyColon
New Member


Date Joined Jun 2009
Total Posts : 13
   Posted 6/30/2009 3:29 PM (GMT -6)   
Zippy123 said...
That's great Deb, to finally find something to help you so much after all them years.
At the very least people can try taking B-12 for a month or so and see what happens, it isn't like it is that expensive to try.


Thank You for your support!

lucasJ
Regular Member


Date Joined Apr 2009
Total Posts : 178
   Posted 6/30/2009 7:04 PM (GMT -6)   
Glad to see you here deb. I posted the video, found it by accident. I think our bodies are complex, and noone knows what can affect another part of our body. I meant to have my b12 checked today at the dr. office, especially since my dad and uncle and others in my family have b12 deficiencies, but i went in for hemmies and ended up in the surgeons office, so i did not get to get it done today. I am taking some b12 under the tongue stuff, so in the meantime, maybe build my stores. thanks for the story. If it was a coincidence that you went into remission at the exact time you had the injections, what a coincidence...lol.

B12SavedMyColon
New Member


Date Joined Jun 2009
Total Posts : 13
   Posted 6/30/2009 8:26 PM (GMT -6)   
lucasJ said...
Glad to see you here deb. I posted the video, found it by accident. I think our bodies are complex, and noone knows what can affect another part of our body. I meant to have my b12 checked today at the dr. office, especially since my dad and uncle and others in my family have b12 deficiencies, but i went in for hemmies and ended up in the surgeons office, so i did not get to get it done today. I am taking some b12 under the tongue stuff, so in the meantime, maybe build my stores. thanks for the story. If it was a coincidence that you went into remission at the exact time you had the injections, what a coincidence...lol.


Thank you so much for posting my link. And I had someone else contact me who is trying to build up his deficiency after you posted this link.

My family and I just came back from California as my son submitted the video in the UC Success Tips Contest 2009 in the wellness category and won. The contest was sponsored by the CCFA.org and P&G Pharmaceuticals. None of the details are posted yet, but soon will be at www.UCSuccess.org We walked in the Take Steps for Crohn's & Colitis walk at the University of California Irvine. We are going to be in a documentary that was taped out there that will be use as a learning tool is what we told. It was a blast! There are six winners total with their UC Tips.

mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 6/30/2009 8:39 PM (GMT -6)   
Yea that was me talking to you on youtube.... I am on another loading dose of B12 injections starting today taking weekly.... Hopefully it makes a difference....at least with the fatigue...
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"


B12SavedMyColon
New Member


Date Joined Jun 2009
Total Posts : 13
   Posted 6/30/2009 10:44 PM (GMT -6)   
mbx5 said...
Yea that was me talking to you on youtube.... I am on another loading dose of B12 injections starting today taking weekly.... Hopefully it makes a difference....at least with the fatigue...


I hope it helps you also, I went to the Dr. Office today and checked on my injection dose I started with, it was the same as I am taking now, 1 ml one injection a week. My B12 level is building up now over a time frame of about 18 months.

I'm in the process of weening off Remicade infusions out to every 12 weeks (I don't feel remicade ever helped me, even at every 6 weeks. I never feel like I need it, just doing what the doc says is best for me)

Daily I take a couple of mesalamine pills. one prenatal vitamin, one iron pill, and then my 1ml B12 injection weekly.

Keep me posted on how you are doing, I wish you well!
Deb,

My Video is below,

http://www.youtube.com/watch?v=wBRhvYhf8j0

Also from the web site www.UCsuccess.org, My Son is one of the Grand Prize Winners, for submitting the video in the wellness category . The winners have not posted to the site yet. Will keep you posted with up dates.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/1/2009 12:15 PM (GMT -6)   
Deb, I'm glad you're doing well! And this reminds me that I need to have my B12 levels checked since it's been a while...
 
mbx5, are you taking B12 because your levels are low or just because your fatigued? My B12 levels have been in the normal range but I'm still fatigued all the time even though I'm in remission.
Female, Age 20
Remicade, Colazal, VSL #3 DS, Forvia, Vitamin D, Calcium, Prozac, Turmeric


B12SavedMyColon
New Member


Date Joined Jun 2009
Total Posts : 13
   Posted 7/1/2009 2:28 PM (GMT -6)   
bookworm21 said...
Deb, I'm glad you're doing well! And this reminds me that I need to have my B12 levels checked since it's been a while...


mbx5, are you taking B12 because your levels are low or just because your fatigued? My B12 levels have been in the normal range but I'm still fatigued all the time even though I'm in remission.


May I ask what your levels are? It seems mine need to be on the high end to feel my best. If I go below 500 symptoms seem to flare the first I notice is a bizarre sleep disorder, bleeding gums and fatigue.
Deb,

My Video is below,

http://www.youtube.com/watch?v=wBRhvYhf8j0

Also from the web site www.UCsuccess.org, My Son is one of the Grand Prize Winners, for submitting the video in the wellness category . The winners have not posted to the site yet. Will keep you posted with up dates.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30614
   Posted 7/1/2009 6:28 PM (GMT -6)   
I just wanted to add that bleeding gums could be caused by various reasons...vitamin K deficiency or gingivitis or medications to name a few.

q
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/2/2009 9:46 AM (GMT -6)   
I have no idea what my B12 levels are. The last time they were checked (Nov. or Jan.), my GI just said that it was in the normal range. And whenever I tell them about my fatigue, they just say "it's your new baseline," in other words, there's nothing that can be done. But I saw my rheumatologist today and told her about the fatigue, and she tested for my B12 levels. So I'll find out early next week!
Female, Age 20
Remicade, Colazal, VSL #3 DS, Forvia, Vitamin D, Calcium, Prozac, Turmeric


love4cats
Regular Member


Date Joined May 2007
Total Posts : 458
   Posted 7/2/2009 10:58 AM (GMT -6)   
I am so glad to hear that something as simple as B12 helped you get back your health. 
 
I have always been mystified at the difference in treatment options that work for some and not for others.  That tells me that there are different causes of UC.  Until researchers find the cause (s) of UC, then we will never know what will cure it.
 
Thank you for making your story public.  It may help somebody else.
 
 
Dx:  UC Proctitis 2006 
Meds:  None so far. Garlic works to ease flares. My GI laughed when I told him and said it was just coincidence. 
Started Meds:  Apr 9 08 500mg 5ASA (salofalk) to ease flare, tapering, stopped. 
Diet:  Regular fresh garlic, Biobest yogurt daily, Omega 3 supplements, very limited junk food, carbs and processed food, low fat diet.  Lots of fresh fruit and veggies (limited potatoes). 
 Added: tumeric and probiotics.
 
 


Paul L
Veteran Member


Date Joined Dec 2005
Total Posts : 647
   Posted 7/2/2009 8:00 PM (GMT -6)   
I was tested regularly for B12 and received monthly shots for over 3 years before I finally had my colon removed last October. The B12 made no difference in my UC symptoms.
Paul
Diagnosed in 2000 at age 43 with UC. Colon removed October 20/08.
Bad reaction to Asacol, Pentasa and Dipentum - can’t take any more 5ASAs.
Prednisone - worked well for 1 month, then side effects became unbearable.
6-MP - blood tests showed not metabolizing properly.
Corticosteroid enema, Flagyl, Ciprofloxin, VSL#3, Adacolumn Apheresis – no effect
Methotrexate with Remicade - 7 infusions with no improvement
Folic Acid and B12 injections.
Abatacept trial - no effect
Visit our photo albums at: http://www.laflammefamily.ca 


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 7/2/2009 9:35 PM (GMT -6)   
I might give it a shot. I guess I can't knock it until I try it. I don't think it will work though. The only thing that has been full proof for me through the years battling this wonderful disease is the equally wonderful drug prednisone.

Age: 31
Location: Missouri
Diagnosed with UC in 1997.
Medications: Mesalamine rectal meds, back on 100 mg Azathioprine
 
 
 


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 7/2/2009 11:09 PM (GMT -6)   
My levels were in the low 300's....even after a month of loading, so I am on month 2.

Bookworm - I am taking B12 for the low levels in my blood tests, but it sure does help my fatigue as well....

My flare is showing signs of letting up... I am thinking it is a combination of 1.) Imuran kicking in, 2.) Avoiding foods that inflame my colon, 3.) B12 shots, and 4.) Reduced stress due to Paxil.... It may also be cyclical as well - i.e. it is just finally petering out on its own - not sure on that, but in my 15 years I have had flares that have a mind of their own thats for sure...
Stats:35 yr old male. UC for 15 years.
location:North Western PA
DX: Left sided UC, most recent scope 5/20/09 UPMC Pittsburgh Presbeterian
Medications:No longer on Pred as of 6/15/09, 12x pills Asacol per day, 100mg Imuran per day, 1mg Atavan per day (anxiety) when needed, 20mg paxil per day, Super-omega fish oil pills - 1x per day, Flax oil pills - 1x am, 1x pm, Culturelle probiotics - 2x am, 1x pm, Vitamin B-12 injections monthly.
Surgeries: Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (and I am still more afraid of my UC!!)

"I poop in the woods because I can"

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