Does anyone else who has an ileostomy have to take Magnaspartate sachets for low magensium?

[cathysal]

Because of the ileostomy which I've had for 18 months I suffer from low magnesium. I take 1-2 magnaspartate sachets per day but because they cause diahorrea I feel they do me more harm than good because soon after I take them I then have a couple of bags full of pure liquid poo (sorry if tmi!). It's almost as if the sachet is then just running right out of my body again. This then makes me dehydrated so I also take rehydration sachets. I have sometimes gone so low that I've had to be hospitalised for a few days to be 'rehydrated'. Four weeks after finishing my 2nd line chemo in February I had a blood transfusion and a magnesium infusion. However, after feeling great because of this, it is getting very low again which means I'm permanently exhausted etc. I wonder if anybody has managed to persuade the powers that be to take them in for regular magensium infusions, perhaps every four weeks therefore preventing this problem. I have asked but never seem to get a proper answer and am just told to phone in when I start to feel bad. I do try and eat foods that are high in magnesium but because of the stoma some of them are not really suitable.

[Jennie]

Hi cathysal

I think we've been in contact before. I don't have oc but have had an ileostomy for 41 years. I have been extremely lucky and never had to take supplements of any kind - only loperamide or codeine phosphate when I've had what others call a "tummy upset". We're all different and what works for some may not suit others. 18 months is still a relatively short space of time and you may still be settling down from the trauma of everything. You are probably on other medication which might be stripping your gut of good bacteria. I try to have at least 1 acidofulous (pro-biotic) yogurt drink every day (and was recommended by my stoma nurse to drink up to 5 of these a day! - expensive!). I now make my own from a product called Easy-yo ( obtainable from QVC shopping channel, Robert Dyas & Julian Graves - you will find it on the internet too) I know this constant worry about your gut along with all your other problems, gets on top of you and makes you feel wretched. Keep your chin up. Try to do something just for you every day or so - pamper yourself. You know what the advert says "because you are worth it!"

Stay well, Jennie (ROCC)

[cathysal]

Hi Jennie

Thanks for your answer. The low magnesium which affects me is because of the OC, something to do with the kidneys not working properly - I don't have any pain with it just the lethargy, exhaustion and confusion which are the symptoms of it. I get blood tests every 3 weeks or so to see how it's going on and I still take up to 8 immodium instants a day, plus a couple of codeine at night to try and slow down the output from the stoma.

I have asked at the hospital if I could have an infusion every 4 weeks or so because it works wonders! Unfortunately it doesn't stay in the body very long so it would need to be done regularly. For some reason though they prefer to wait until it's down at rock bottom which means I'm knackered! before they top me up again. I was hoping someone would tell me they have it done on a regular basis so the next time I see my oncologist I could tell her this and maybe persuade her it's the way to go! Then I maybe wouldn't have this catch 22 situation where I'm taking the magnaspartate which then runs right through me because it causes diahorrea which is the last thing you want with a stoma!

I try and eat as many magnesium boosting foods as possible and take pro-biotic yogurt and apart from when I'm having chemo am not on any medication other than the magnaspartate.

I see my ocologist next week so will have another go at trying to get regular top-ups!

Cheers. Cathy xx

[Luk4ward in reply to cathysal]

Hi cathysal, I had an ileostomy after an op 7 months ago. It is interesting that your Kidneys are not working properly. I was told that my OC mass was pushing on one of my kidneys. So that was intefering with its function. The hospital had me in for a day op and fitted a stent in my back which prevents my OC mass from pressing on the kidney. It may be worth asking your onco whether you have a similiar situation.

[cathysal]

Hi Luk4ward

Thanks for your reply. I don't think that's the problem with me - I think it's a general problem with the OC and an ileostomy that the kidneys don't function as well as they should. There again, I could be wrong about that! I have been told a couple of times why I have this problem but sometimes the info goes in okay but by the time I get home I've forgotton what I've been told! I must admit I'm a bit in awe of lots of the women who contribute here about how much they know about OC and the treatment they're getting. I suppose I just tend to put myself in the hands of my oncologist as I always feel she's giving me 100% in trying to keep me alive and I do have faith in her doing the best for me. Am I being naive in this? I just want to have as much energy as I can during the time I'm off chemo because who knows how soon it'll have to start again so that's why I was trying to see if anyone was in the same boat. I will ask her when I see her next week if that's my problem. Thanks again.

Cathy xx

[Luk4ward]

Hi cathysal,

The oncologists do their best but they are bombarded with cancer of all types so it helps for you to understand the jargon because you can then ask specific questions relating to you. I have only come across ovacome recently and I have to say the level of understanding that contibutors to this site have about OC is comprehensive and I have to say amazing. I come here for serious well thought out answers. Thank you all.