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Posted 11/14/2009 1:35 AM (GMT 0)
Check out the links http://www.ucsuccess.org/ or http://www.youtube.com/user/UCSuccess .   I hope our stories will inspire you and your families! I am Deb, "The Winner of Life" and my son Bob H. helped me get my story out to the world! I am very happy to be able to share with you!        
Posted 11/14/2009 1:44 AM (GMT 0)
Thanks for the story. Please, tell us how B12 was related to your symptoms and how the discovery helped in the healing. I am glad you are doing fine!
Posted 11/14/2009 2:07 AM (GMT 0)
When my B12 defiencey was diagnosed from a B12 blood test my level was in the 190's. According to American FDA levels normal range is 200-900. In some countries there normal levels are 550-1500. I need to maintain about 1000-1500 at least. Since then I have been completly symptom free (KNOCK ON WOOD!). Recently I found a great book out there titled "Could it Be B12" and I am amazed at what a B12 defiency can cause. Most shocking is it is on of the most COMMONLY over looked diagnoses that can cause morbility and mortality. I have found all of this information by doing my own reseach. My GI Clinic's are starting to do more routinely checking of all of thier patients.

Deb

Post Edited (TheWinner0fLife) : 11/13/2009 10:00:19 PM (GMT-7)

Posted 11/14/2009 5:19 AM (GMT 0)
When my B12 levels were extreamly low, I had tingling (pins and needles) in my fingers, that's the first signs of permanant nerve damage due to lack of B12 (many IBDers are prone to lack of B12) my doc started out giving me shots and then weaned me onto tabs which I've been taking for the last 7 yrs and my levels have been fine ever since, it did not however put me into remission from my IBD at all...many IBDers take B12 supplements (especially crohnies) and most have not gone into remission due to supplementing with B12 ('ve actually never heard an IBDer going into remission due to bringing their B12 levels back into normal range until I read this post).

:)
Posted 11/14/2009 5:46 AM (GMT 0)
Yes. We need Vitamin B12 due to all the blood we lost. I find B12 helps me get my energy back faster after a severe flare.

B12 has not helped my flares though.
Posted 11/14/2009 6:52 AM (GMT 0)
pb4 said... When my B12 levels were extreamly low, I had tingling (pins and needles) in my fingers, that's the first signs of permanant nerve damage due to lack of B12 (many IBDers are prone to lack of B12) my doc started out giving me shots and then weaned me onto tabs which I've been taking for the last 7 yrs and my levels have been fine ever since, it did not however put me into remission from my IBD at all...many IBDers take B12 supplements (especially crohnies) and most have not gone into remission due to supplementing with B12 ('ve actually never heard an IBDer going into remission due to bringing their B12 levels back into normal range until I read this post). :)   I can't help but wonder if the B12 Deficiency was not cause of the UC. I have done research on Blood counts and from what I have gathered it is a possibility. My life was horrible. Bathroom 20-30-40 times a day mostly blood and mucus. My flare never stopped. I can’t even tell you how many colonoscopies I have had. First I was diagnosed with a unexplainable sleep disorder 1999 with a sleep study and then C-Diff     9-2001 Proctitis  10-2001 Bleeding Gums Tested for Lymes Diagnosed with Fibromyalgia Chronic Inflammation for the Bladder Unexplainable horrific uterine bleed Hair Loss Bad Breath Total Pan Colitis 2006- hospitalized Tested for possible stroke Tested for MS  Right sided nerve damage (most has reversed) Tested for B12 2008    -------Yeah--------   PRICELESS…   All symptoms are gone with the exception of a little nerve damage. My husband can sleep at night. I feel normal! I have my life back!  
Posted 11/14/2009 4:37 PM (GMT 0)
Again, I am the "Winner of Life", Deb H. I hope our stories will inspire others you can live with UC as we all are. I also would like to give an extreme thank you to all the people who worked on getting all the videos and stories out for the world to see. My gracious thanks to Sherry L., RN... from my GI Clinic, known as "My ANGEL," for she is the nurse that asked the question, "Has anyone ever checked your B12?" Also how on earth can I ever thank my family, Bob ("my so understanding and supportive husband"), Bob Jr., (my son and the terrific young man who is helping me to share my story) and Cora Mae, ("my beautiful daughter, who at a young age had a very sick mother and at times it was very hard for her to understand"). For most people, they don't understand what kind of burden of UC to your family. There seems to be no end in sight, can you imagine how much I appreciate their support. For Bob Jr. to win the trip to California and attend the Celebrating UC Success was a Celebration I feel my family truly deserved. My story has encouraged the local GI clinic I visit to routinely check B12 levels of all their patients & they have found more undiagnosed deficiencies (Not just for UC also in other IBS patients). Please don’t assume this will help you, talk to your Doctor about the possibility. You need to find out what your B12 level is and go from there. This story shares only one of the many different health issues I have overcome since the diagnoses of my B12 deficiency. My goal is to make Doctors and Patients more aware of the one of most COMMONLY overlooked diagnosis which leads to mistreatment of many physical and mental health conditions. B12 saved my life, and my mission is to help save others!
Posted 11/17/2009 3:37 PM (GMT 0)
pb4 said... When my B12 levels were extreamly low, I had tingling (pins and needles) in my fingers, that's the first signs of permanant nerve damage due to lack of B12 (many IBDers are prone to lack of B12) my doc started out giving me shots and then weaned me onto tabs which I've been taking for the last 7 yrs and my levels have been fine ever since, it did not however put me into remission from my IBD at all...many IBDers take B12 supplements (especially crohnies) and most have not gone into remission due to supplementing with B12 ('ve actually never heard an IBDer going into remission due to bringing their B12 levels back into normal range until I read this post). :) How did you wean to tabs? Did you take the meythel type of tablets? How many a day? When you did take B12 injections was it weekly? Questions, questions, question.... LOL Thanks for your thoughts! I'm looking forward to hearing from you!  
Posted 11/17/2009 4:09 PM (GMT 0)
I am glad to hear you are in remission but am skeptical that it's due to B-12. My GI checked my B-12 levels routinely during my last 2 year flare in the late 1990s. It wasn't until the tail end of that flare that my levels dropped to the point of needed supplementation. For 6 months I received injections of B-12 but it never improved my flare.

Sue
Posted 11/17/2009 5:59 PM (GMT 0)
Winneroflife, I don't mind questions lol...I was getting monthly B12 injections for 4 months, the last month I got my injection my Dr. told me to take 1200mcg tabs one/day, they are time-released and he said to take it in the evening with my supper because the evening was the best time (cannot remember his explantion for why) and with my supper (also can't remember the explantion but he was very specific about it all)...he checked my levels in the 3rd month and then again 4 months after being weaned onto the tabs and every yrs since (about 8 yrs ago now) and my levels have remained perfect.

I also never noticed any improvements with my IBD symptoms as a result.

:)
Posted 11/25/2009 2:54 AM (GMT 0)
I am so thankful for where I am today! I really have something to be thankful for this year!(KNOCK ON WOOD) I think it is great for everyone to share thier stories, personal experiences and thoughts with other patients. We are not alone; it is great to have support!
Posted 11/25/2009 3:01 AM (GMT 0)
     I have tingling in my fingers too, but I attribute that to high blood sugar from the prednisone.  Trying my darndest to hold it down by diet and doc said that as soon as I am off the prednisone he believes my sugars will return to normal too.  My FBS is normal but the 2hr PP is like 180!  Last year I had my B12 checked and it was within normal limits.  Should I have it rechecked?  Does it go down with Remicade infusions?
Posted 11/25/2009 4:47 AM (GMT 0)
B12 is very interesting. you store it in you liver and can store a 5-7 year supply. If your body stops absorbing it you liver supply will go down. I need to maintain 1000-1500 b 12 level for me to be normal. Personally I would try to have it checked both blood level and meythel. Do your gums bleed?
Posted 11/25/2009 6:23 PM (GMT 0)
I started taking B12 today and I will give you guys an update in a week
Posted 11/25/2009 6:35 PM (GMT 0)
Good Mudua Best of Luck
Posted 11/25/2009 9:05 PM (GMT 0)

TheWinner0fLife said...

I hope our stories will inspire you and your families! I am Deb, "The Winner of Life" and my son Bob H. helped me get my story out to the world! I am very happy to be able to share with you!



This is fantastic and I am overjoyed that you have decided to share this success story with us....my one question is what dosage of B12 are you taking daily? Forgive me if you mentioned it already.

thanks,

NBT

Post Edited By Moderator (Judy2) : 11/28/2009 8:43:34 AM (GMT-7)

Posted 11/28/2009 3:20 PM (GMT 0)

NuffinButtTrouble said...

TheWinner0fLife said...
I hope our stories will inspire you and your families! I am Deb, "The Winner of Life" and my son Bob H. helped me get my story out to the world! I am very happy to be able to share with you!





This is fantastic and I am overjoyed that you have decided to share this success story with us....my one question is what dosage of B12 are you taking daily? Forgive me if you mentioned it already.

thanks,

NBT

 

 

Dear NBT,

 

I give myself an injection weekly of 1000 mcg once a week.

I'm thrilled to share my story and the others with everyone also! I just received a copy of the documentary in the mail which was filmed in California professionally on the trip that we all won and it is so INSPIRATIONAL! I believe it will be on the web soon. All our stories are so different; bottom line is UC is one devastating disease. Not many people really talk about all of the effects it has and how it can control your life!

 

Hope you had a nice Thanksgiving! :D


Post Edited By Moderator (Judy2) : 11/28/2009 8:44:59 AM (GMT-7)

Posted 11/28/2009 3:25 PM (GMT 0)
pb4 said... Winneroflife, I don't mind questions lol...I was getting monthly B12 injections for 4 months, the last month I got my injection my Dr. told me to take 1200mcg tabs one/day, they are time-released and he said to take it in the evening with my supper because the evening was the best time (cannot remember his explantion for why) and with my supper (also can't remember the explantion but he was very specific about it all)...he checked my levels in the 3rd month and then again 4 months after being weaned onto the tabs and every yrs since (about 8 yrs ago now) and my levels have remained perfect. I also never noticed any improvements with my IBD symptoms as a result. :) Do your gums bleed a lot when you floss or brush your teeth?
Posted 11/28/2009 3:45 PM (GMT 0)
suebear said... I am glad to hear you are in remission but am skeptical that it's due to B-12. My GI checked my B-12 levels routinely during my last 2 year flare in the late 1990s. It wasn't until the tail end of that flare that my levels dropped to the point of needed supplementation. For 6 months I received injections of B-12 but it never improved my flare. Sue Hello Sue,   After reading the book "Could it Be B12?" I  SERIOUSLY think there is a very strong possibility the B12 deficiency is the possible cause of the UC and all the other heath issues I have had. As to become completely symptom free of all of the health issues listed below, including UC with B12. I truly believe along with some of my doctors (who listen) is much more than a spontaneous remission. (KNOCK ON WOOD)   First I was diagnosed with a unexplainable sleep disorder 1999 with a sleep study and then C-Diff     9-2001 Proctitis  10-2001 Bleeding Gums Tested for Lymes Diagnosed with Fibromyalgia Chronic Inflammation for the Bladder Unexplainable horrific uterine bleed Hair Loss Bad Breath Total Pan Colitis 2007- hospitalized Tested for possible stroke Tested for MS  Right sided nerve damage (most has reversed)   Also I hope you had a very nice Thanksgiving! :D  
Posted 11/28/2009 3:49 PM (GMT 0)
Remember also that as we age, our bodies ability to absorb B-12 decreases. Absorption is based on presence of a catalyst known as the "intrinsic factor" which is produced in the GI tract. The production of intrinsic factor wanes with age, and makes oral B-12 less effective. This is why many seniors receive regular injections of B-12, because taking it orally is not helpful.
Posted 11/28/2009 4:14 PM (GMT 0)
Judy2 said... Remember also that as we age, our bodies ability to absorb B-12 decreases. Absorption is based on presence of a catalyst known as the " intrinsic factor " which is produced in the GI tract. The production of intrinsic factor wanes with age, and makes oral B-12 less effective. This is why many seniors receive regular injections of B-12, because taking it orally is not helpful.   Good morning Judy 2,   In my case, I am age 46, I was tested for the presence of the "intrinsic factor" production through a scope and everything was completely normal. I also was retested for chrohn’s and any other possible GI causes with a barium x-ray and all of these test came out completely normal.   The latest diagnoses I was just given recently is a "Unexplainable Intestinal Disorder". Hum??   Oral b12 does not work for me, this is why I do in the muscle injections at least it last for a week.   I just hope this information I am sharing with my personal, odd experience my help someone, some how :D     Deb      
Posted 11/28/2009 6:21 PM (GMT 0)

Glad to hear your original misdiagnosis was corrected prior to surgery. How could a GI make such a blunder; I would be pissed.

I'll inquire about this same thing for me but I would be shocked to learn that GI's of any inteliigence would overlook this.

I cannot believe that I would find this out through a forum and they would not have thought about it because it's their job.

I'll look into it nonetheless and am hopefull that there was an ignorant baffoon who first misdiagnosed me and that others who later cared for me were foolish enough to not catch it.

Posted Yesterday 2:19 AM (GMT 0)
Burli said... Glad to hear your original misdiagnosis was corrected prior to surgery. How could a GI make such a blunder; I would be pissed. I'll inquire about this same thing for me but I would be shocked to learn that GI's of any inteliigence would overlook this. I cannot believe that I would find this out through a forum and they would not have thought about it because it's their job. I'll look into it nonetheless and am hopefull that there was an ignorant baffoon who first misdiagnosed me and that others who later cared for me were foolish enough to not catch it. WOW, I love the way you worded this :) I have no idea how so many Doctors could overlook something SO SIMPLE! I was in a University Hospital also?  
Posted 4/19/2011 12:02 PM (GMT 0)
****Update****

B12 has keep me flare free for over 2 years!

I was in a constant flare for 7 years!

I feel Great!
Posted 4/19/2011 2:30 PM (GMT 0)
How do you get your B12 and what dose?
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