Correct dose of b12 post abdominal surgery/stoma bag

[Vonni7]

I am trying to help my son. Many years ago he was diagnosed with Crohns disease and over the years has had extensive abdominal surgery. He now has a stoma bag. At present he is taking 1000mcg of b12 but I have recently read that he needs at least 2000 mcg! He is constantly feeling unwell! I would be so grateful for any advice on this matter - I would love to see him feeling better and enjoying life! Thank you

[Jillymo]

Hi,

I have undergone extensive investigation for Crohns which as yet not complete. From my understanding Crohns affects the ileum which makes it hard to absord B12. I were told I would need injections for life and now self inject.......

B12 deficiency in Crohn's disease

The disease typically affects the ileum, the last portion of the small intestine, which absorbs vitamin B12. Some people with Crohn's disease may undergo surgical removal of part or all of the ileum, making it difficult to absorb vitamin B12.

Has your son had his B12 levels checked ? He might need other vitamins such as folate, iron, vit D3 ect. I am surprised his gastrologist has not advised of the possible deficiencys that run along side of Crohns and such surgery.

You might find the following link of interest....... medicalnewstoday.com/articl...

I wish your son better health as it must be a worry for you.

myostomycare.com/ostomy-car....

[wedgewood in reply to Jillymo]

Brilliant respond dear Jillymo 👍

[Vonni7 in reply to Jillymo]

Thank you so much for your response Jillymo! yes I have looked at the implications of his surgery in terms of the ileum and absorption issues and understand it profoundly affects his ability to absorb b12. His doctors did "mention" to him to take a b12 supplement! but no in depth advice was forthcoming! I have been taking B12 supplementation for some years now so have accumulated some understanding of the subject (including the issues that result from any surgery around the ileum) but I am not knowledgeable on the dose required in the situation my son finds himself in! I have a couple of excellent books on the b12 deficiency problems but apart from stating that people like my son need at least 2000mcg I can find no further info! Yes my son has his various levels checked regularly and takes other vitamins that you mention; but as we know the b12 blood test is far from satisfactory! Thank you so much for your kind words!

[Jillymo in reply to Vonni7]

Hi,

You talk of your sons....... absorption issues and understand it profoundly affects his ability to absorb b12. If your son has absorbtion issue sublingal B12 will not be benificial because it will not be transformed. Hence why many of us are in need of injetions.

ncbi.nlm.nih.gov/books/NBK4...

[Vonni7 in reply to Jillymo]

Thank you Jillymo! I have suggested to him that injectable b12 would be best for him but he doesn't want to do that!! in light of what you have said and also Wedgwood - i will try to persuade him to try! I have been self injecting for some years now and find it very beneficial.

[Jillymo in reply to Vonni7]

In that case you are the best one to advise him. None of us wish to inject but better to do so than suffer the effects of neurological damage. Just a suggestion, perhaps you could inject him rather than he do it himeslf.

Sending best wishes to you and your son.

[Vonni7 in reply to Jillymo]

Thank you Jillymo!

[wedgewood]

You say that your son is “ taking “ 1000 of B12 . I assume you mean that he is taking tablets , which he will find do not help the absorption. The best way for him to get his Vitamin B12 is to inject it , as JillyMo has explained . Do get him to ask his GP for injections . If that fails , then self injection is called for . We all on this forum are obliged to self inject , which may seem daunting , but in reality is not . It is not expensive-about £2.00 for an injection - everything included . It can be administered by sub-cutaneous ( short needle like thyroid injections) or Intramuscular ( I.M. ) injection .

We can only get b12 single use ampoules from German online pharmacies , because here they are on prescription only . . If you find that you would like or need to self inject , then come back here for all the information that you need . Best wishes .

[Vonni7 in reply to wedgewood]

Yes he is taking sublingual tablets! I have tried to get him to inject instead but he is resistant to that suggestion. I will try to persuade him to try it! i went through the experience of trying to get my doctor to help me with my b12 deficiency problems and drew a blank! i would encourage my son to go for the self injecting option. Thanks to this wonderful forum and people like you, i have learnt everything I need to know about self injecting. I now buy my B12 Methylocobalamin (in powder form) in the UK (without a prescription) and buy the saline needed for the mix in Germany as you cannot buy it here. Thank you once again for all the help you provide on this fantastic forum! Very best wishes.

[AtoZ24 in reply to Vonni7]

I was diagnosed with PA in 2015, and have had the B12 injections every 12 weeks since then, administered by the nurse at my GP practice. If you, he or anyone requiring B12 shots, because of PA then surely they should be provided by the GP?

[Vonni7 in reply to AtoZ24]

Thank you for your message AtoZ24 - unfortunately the GP practices do not provide regular enough treatments for my son's needs. best wishes Vonni

[wedgewood]

There is an American site that actually sells the Oxford Biosciences powdered Methylcobalamin at inflated prices . But there is good information about injection B12 on that site . Which might be of interest perniciousanemia.org

[Vonni7 in reply to wedgewood]

thank you Wedgwood! yes interesting info as you say. I buy mine direct from Oxford BioScience at a third of the price that that site is selling for!

[Vonni7 in reply to Vonni7]

Having just had a long chat to my son he is now talking about sprays!! he read somewhere that they get absorbed directly into the bloodstream! surely in a miniscule amount? I am still trying to convince him to try self injecting - will keep trying!

[Shadowlight in reply to Vonni7]

Apologies if I've missed this, but how old is your son, and what are his objections to injections?

Does he know that you self-inject? Perhaps watching you do so might help?

[Vonni7 in reply to Shadowlight]

thanks for your message Shadowlight - my son is 53 - he has had serious health issues for most of his adult life! I have tried over the years to help him as i have b12 deficiency myself and have done lots of research and have had the benefit of this wonderful forum for some time - years ago I suggested he self inject - but he said he just couldn't do that! has a horror of needles! yes he knows I self inject. I inject into the top of my thigh/bottom - is there another site that would be easier for him? another member mentioned two kinds of needles - I use the standard intramuscular needle but a shorter needle was mentioned? used for thyroid apparently? I don't know anything about this - is it an alternative that might make the whole thing easier?

[Shadowlight in reply to Vonni7]

That must be incredibly frustrating for you. Yes, some people use sub cutaneous injections, using a very short, very fine needle, usually in the stomach.

I'm an american, so with apologies, I'll have to use our measurements. Someone here can translate UK configurations. These needles are usually about 1/2 an inch long, and 30 gauge in diameter. They are often used by diabetics.

They are usually, quite literally, painless. There is also a kind of auto injection, where you press a syringe against the skin, press a button, and the needle injects itself. Again, someone else will have to explain that better. Like you, I utilize IM, using a needle that is 1 3/4 inch long. I most often use a 28 gauge. That would be daunting for many

That said, I don't know how you can get him past his fear of needles. All I can think of is to ask him if he wants to feel better, and explain to him that this is a path to that.

Any temporary discomfort along the way is worth feeling better.

[Vonni7 in reply to Shadowlight]

Thank you for your message Shadowlight! very helpful! I'll keep trying! best wishes Vonni

[Gambit62 Administrator]

Vonni7 - passive absorption is the process by which very small amounts of B12 are absorbed outside the ileum, and allows absorption problems to be treated with high dose oral/sublingual/nasal B12. On average 1% of high dose oral absorbed but this is an average and people vary a lot in what isright for them. I take around 9000mcg daily.

From studies somewhere around 2/3 of people get on with high dose oral at around 1000mcg but that leaves 1/3 who don't ... and for some it doesn't actually seem to work at all.

[Vonni7 in reply to Gambit62]

Thank you so much for your message Gambit62 - really helpful and very interesting! I had no idea about that! and it answers my question about sublingual absorption into the bloodstream! I see you take a high dose of 9000mcg - you say some people get on with high dose of around 1000mcg - that doesn't seem very high to me? i use a couple of good quality companies for my supplements but could you recommend who you use and what product? I think it is worth a try for my son who has a horror of needles! Thank you again and best wishes Vonni

[Gambit62 Administrator in reply to Vonni7]

I use a mix of adenosyl and methyl - adenosyl is more difficult to find - source mine from a company called Natures Fix

[Vonni7 in reply to Gambit62]

Thanks so much! I'll check it out!

[AtoZ24 in reply to Gambit62]

That's right, Gambit62, some people-me included- lack something called 'intrinsic factor' which means you are unable to use any form of tablet spray etc, and the B12 needs to be directly into the body to be useful.

[Gambit62 Administrator in reply to AtoZ24]

AtoZ24 , passive absorption does not depend on intrinsic factor, which is used for absorption in the terminial ileum. Passive absorption is possible in patients with PA.

[Vonni7 in reply to Gambit62]

Just one more question please Gambit62 - when you say "on average 1% of high dose oral absorbed..." does that include sublingual?

[Oneash]

Has he had an injection.? If he has, so you know he doesn't have any risk of anaphylactic shock, then you could inject him. If he just had a few doses, I'm sure he'd realise the difference it makes.

[Vonni7 in reply to Oneash]

Thank you for your message Oneash! He has had injections in hospital for example but has a fear of needles so says there is no way he can do it himself! He lives miles away from me - Yes I agree - if he could see what difference a few shots make! as I did! he would realise their value! I'll keep trying! Best wishes Vonni

[Gambit62 Administrator in reply to Vonni7]

Yes - there is slightly more absorption from sublingual but its like moving from .98% to 1.00% so not that much

[Vonni7 in reply to Gambit62]

Thanks so much! best wishes Vonni

[Vonni7 in reply to Gambit62]

I'm sorry to bother you again Gambit62 but my son is convinced that sublingual tablets bypass the gut and go straight into the blood stream! How can I explain it to him?!

[Buy1get1free]

I have Crohn’s disease with many surgeries over the past 25 years. Taking oral B12 supplements has no benefit as it will not be absorbed through his ileum. He MUST start IM injections as soon as possible with a starting dose of 6 injections spread over the first two weeks then a maintenance dose every 12 weeks. Here in the UK the preferred injection site is top of the arm which is quick and pain free. I also take a calcium/D3 supplement in tablet form.

[Vonni7 in reply to Buy1get1free]

Thank you so much for your message Buy1get1free! I am trying to get him past his horror of needles! I have read that subcutaneous injections are painless ! and presumably as effective - do you know anything about that?

[Sleepybunny]

Hi,

These UK charities might have useful info.

Crohn's and Colitis UK

They have a helpline.

crohnsandcolitis.org.uk/

GUTS UK

gutscharity.org.uk/

They have an online contact form.

gutscharity.org.uk/contact-us/

[Sleepybunny in reply to Sleepybunny]

I found some interesting articles when I searched online for

"nhs trust crohn's b12 injections"

"nhs icb crohn's b12 deficiency"

[Vonni7 in reply to Sleepybunny]

Thank you so much Sleepbunny - I'll take a look at those articles. Best wishes Vonni

[Marz]

I was diagnosed with Crohns over 50 years ago at 27 whilst having surgery for Ileo-caecal TB. 22 weeks in hospital. Further surgeries and complications followed. I had 6 monthly check ups until 2004 when I moved to Crete.

B12 was not mentioned or checked. It was only when my thyroid was correctly tested in 2005 it was discovered I had Hashimotos - auto-immune thyroid. Learning more, I soon understood the importance of B12 and discovered the reason for my numb lower legs and feet ! I now self-inject weekly and take a good B Complex to keep all the B's in balance.

Low VitD is common with AID. I take 8000 iu's and the co-factors magnesium and zinc. Testing VitD twice a year is suggested and a result of 100+ is good. On-line testing kits available at...

vitdtesting.org.uk