Phosphate supplementing

[Duncan80]

Hiya everyone,

Just want to say what a lifeline this place is.

I was wondering if anyone could explain the phosphorus supplement need for me. I’m self IM injecting daily loading doses. I’ve had ileum removed so now very B12 deficient but not got PA. I’ve read on here people with PA needing phosphorus whilst injecting and wondered if I should be supplementing or eating bananas and coconut juice?

Thank you, as always

[Nackapan]

Yes eat it and drink

Do you mean potassium.?

I dont know If the same as phosphate?

Bananas, coconut water, nuts ,whole wheat ,dairy are good sources

Do not take a supplement of this unless a doctor has prescribed it for an unrelated medical condition.

I'm sure others will advise in more dea.

[fbirder]

There is absolutely no reason why you might need phosphorus.

As Nackapan says, I think you mean potassium.

If you had macrocytic anaemia then you may need extra potassium for the first few weeks after you start B12 supplements. After that you need no more potassium than anybody else.

[deniseinmilden]

It is important/essential for you to get your blood regularly tested for at least potassium, magnesium, iron and Vitamin D but if you can get more things monitored the better, especially sodium too in your case. The ileum is responsible for the absorption of most of the products of digestion, as well as B12, so your Dr should monitor you from now on. Don't assume they will though!

You will also benefit from monitoring your folate levels as it is good to keep these high too but be aware that these are now usually done in conjunction with B12 and the less informed medics may get excited about them both being high. So long as you know it is normal to be high if you are injecting and folate supplementing you will be able to advise them that it is OK - but don't expect them to listen, just stand your ground and be grateful if they do.

Keep a record of your weight and any symptoms and sort out any problems urgently because with such severe challenges to absorption it is easy to get off track but much harder to get back on. It can be helpful to write yourself out an "out of 10" score chart and score a few symptoms against this -

anxiety and mood,

nervousness and jitteryness,

fatigue,

pins and needles and feeling in your fingers and toes,

cramp,

ease of breathing/not breathless,

ability to sleep

are the main ones I can think of for now which are good indicators of your levels of potassium, sodium, magnesium, iron and Vitamin D.

Be matter of fact and don't look for trouble to get the most accurate information: ask yourself questions like "how positive am I feeling today?"

"how smooth are my movements?"

"how keen am I to do things and how long can I keep going for?"

"how easily can I feel a hair on a smooth surface with my toes or between my fingers?"

"how much cramp have I had in the past 24hrs?"

"how much exertion can I do before I get breathless?"

"can I sleep readily at the right time?"

Listen to your body and if you don't think something is right, act! Try to be objective (hence the score chart) and don't let it worry you - know that if you are being careful you will be OK.

Once you have got practiced at doing it and recognising your symptoms you won't have to score yourself every day but it is good practice to check in with yourself at least once a week to make sure you stay on track. If there are problems, ask for blood tests to help you determine what supplements you will need.

See if you can find an online group who have had ileum removal operations who can offer advice and support - they can be a vital lifeline. Also look up your operation and the potential effects online because forewarned is forearmed.

You will have to manage things from now on but if you do there is no reason that you can't lead a good life for a long time - you just have to get things right.

Good luck with everything!

[fbirder]

"The ileum is responsible for the absorption of most of the products of digestion"

Actually most is absorbed in the jejunum. Don't want to needlessly alarm anybody with a ileostomy. They can still absorb most nutrients.