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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To think that a blood transfusion for an iron deficiency is too drastic?

57 replies

Spermysextowel · 27/09/2015 04:28

Had a hosp appt yesterday with 15 yr old son. He suffers from Crohns so he doesn't absorb much nutrition from meals at the moment.
The consultant was so concerned by my son's pallor that he thought he should be admitted straight away, but he then gave us the weekend to adjust to the idea. A blood transfusion sounds alarming; I don't know what options are available. Just keep crying all the time when the children can't see me & I don't know what to do.

OP posts:
Mermaidhair · 27/09/2015 04:36

A blood transfusion sounds like a huge deal but it really isn't. I have had it done twice for low iron levels. It gets to the point that levels are dangerously low and tablets take to long to start being effective. Your poor son must feel like crap, but he doesn't realise how badly he feels. I always felt greats after my blood transfusions and hospital staff were amazed at how my colour changed. A blood transfusion will look the same as being hooked up to fluids instead it will be blood.

PeaceOfWildThings · 27/09/2015 04:37

It's the best way with severe anemia. The only way, for many with pernicious anemia (low B12). Sorry to hear that your son is so ill. You can try tablets, but they take a long time to take effect. Do get your own iron levels checked, too!

Baconyum · 27/09/2015 04:42

It's really not too drastic. Crohns is a serious condition and so is iron deficiency. Seriously low iron levels can affect the major organs especially the heart. Given the appalling lack of blood donations this is not something that's done lightly. Hope your DS feels much better soon.

Baconyum · 27/09/2015 04:43

Crohns and iron deficiency can be serious. Iron deficiency can affect the major organs including the heart and so blood transfusion can be necessary. Plus this isn't something drs do lightly as blood supplies aren't great.

NotAFuckingChance · 27/09/2015 04:43

I was on the very edge if being offered one after having my DS as it is the quickest way of replacing your iron stores. I also believe that you avoid all the usual constipation etc that you get with tablets, which may be better bearing the Chrons in mind.

At the time I was quite scared and reluctant so was given tablets to try. Looking back I wish I had said yes to be honest. Hope your DS is feeling better soon.

Baconyum · 27/09/2015 04:44

Double post due to first post didn't seem to appear.

IamtheDevilsAvocado · 27/09/2015 04:44

Oh god! Poor you and son!

He must be feeling grim... They won't offer unless it's needed.

I was very badly anaemic thru gynae problems... I stupidly refused a transfusion... Really wish I had done.. The tablets just weren't working effectively.

In this case, i would trust the medics... Get them to explain in detail their rationale for requesting this!

Bulbasaur · 27/09/2015 04:47

Is there still a chance to ask the doctors questions?

How does your son feel on the matter? 15 is old enough to have a say in his own medical care. He might be alright with it if he knows what it entails and that might put your mind at ease.

lavendersun · 27/09/2015 04:48

I have had a few OP, it will be fine. I have iron deficiency anemia and pernicious anemia, blood or Hb transfusions for former and regular injections for the latter.

Have you tried floradix? I have avoided blood transfusions for almost three years since I switched to that.

B12 injections are usually given for life once started.

lavendersun · 27/09/2015 04:52

Must add that at the worst my Hb was 7, my gp told my husband that I needed to stay in bed and do nothing, she went and found him in the car park! A transfusion is a much better option.

Dancingqueen17 · 27/09/2015 04:55

This reply has been deleted

Message withdrawn at poster's request.

lavendersun · 27/09/2015 04:59

I have had those too Dancing, not sure what the protocol is, could have changed (have had them for 30 years on and off) but when really low it was always blood rather than iron.

EatDessertFirst · 27/09/2015 07:08

My dad has recently had three tranfusions for similar reasons (gastric bleed caused anemia and various other issues), and it saved his life. Its amazing what difference the transfusion makes so quickly. The medics would not offer if it was not necessary. If it was my donated blood, your son would be most welcome to it! Hope he feels better soon.Flowers

lastqueenofscotland · 27/09/2015 07:20

I was the worst in hb or ferratin any of my doctors had seen ever. They did two blood tears because they thought there HAD to have been a mistake it was that bad. I never had a transfusion, I had a course of iron infusions - one a week for 6 weeks. I don't know if that's an option over here I was abroad at the time but they were incredible.

watchingthedetectives · 27/09/2015 07:42

Patients with Crohn's disease often can't tolerate oral iron easily and it may make their gut symptoms worse. Depending on the level of anaemia the options would be iron infusions- there is one you can have as a one off but I'm not sure if it's licensed for under 16's (although GOSH do use it) and one that is given as weekly infusions until the levels come up. Both work very well.If he is very anaemic a transfusion will work more quickly but the iron maybe effective for longer as it allows the bone marrow to make more red cells.
Is he looked after by a paediatric gastroenterologist?

WhoTheFIsJeff · 27/09/2015 07:42

For them to suggest a blood transfusion your hb has to drop below a certain level, so they wouldn't suggest it unnecessarily. He will feel much better afterwards.

watchingthedetectives · 27/09/2015 07:44

Forgot to add - they maybe worried about other aspects of the Crohn's needing attention as well so they may want him in for a bit of a sort out overall - to reassess him and potentially escalate treatment.

Original poster
Spermysextowel · 27/09/2015 07:46

Thank you all. It makes it seem less worrying & more 'normal'. He will probably need IV steroids too, so maybe they can do it all at once. His consultant did give us time to think about it (tho he did rush the tests thru so we'd have had to go straight back if the results were bad) & googling made me wonder if an iron transfusion would be better. I'm of an age where blood transfusions seem to carry some risks.
I've told him that he'll get the blood
of his aunt & uncle or someone like them who wants to help people & he seems reassured by thinking of it as help from people who understand his problems.
Thanks to the help here I've stopped crying in the shower.

OP posts:
watchingthedetectives · 27/09/2015 07:51

Have they talked about using anti-TNF (antibody treatments) rather than steroids?

gobbin · 27/09/2015 07:53

I have Crohns and have had iron infusions and blood transfusions among other things. You really do feel an improvement the next day after a blood transfusion, the iron ones take weeks.

They must want to give him an instant boost and it's good that they are being proactive - so many Crohns patients seem to get a poor service from their medical teams, so be reassured that he's being looked after. They wouldn't suggest it if he really didn't need it.

wannabestressfree · 27/09/2015 08:01

I am on permanent b12 injections for crohns and feel like a new woman when they kick in. We often don't realise how ill we feel. If you want to ask any questions go ahead or pm me. I am severe crohns patient, looked after at st marks, colostomy bag etc ....

Original poster
Spermysextowel · 27/09/2015 08:23

He has a paediatric gastro at one hosp & an oro-facial consultant at another (it started with a swollen mouth when he was about 7). We seem to have bumbled around a few options; steroid enemas, Salofalk enemas; the number of times I've sent a text to my mother (next to son on contact list) asking if she's ready for bum time is ridiculous!
I've never heard of anti-TNF?

OP posts:
Maudofallhopefulness · 27/09/2015 08:24

Ds has Ulcerative Colitis and has suffered from anaemia in the past. He was on iron for four months. It does take ages for it to kick in properly. I'd go for the transfusion.

Frankly I'm shocked they didn't monitor him properly to let it get that low in the first place. But ds has been very lucky and well cared for so far with his treatment and I don't know how quickly iron levels can fall so I may be talking bollocks.

Jellybean83 · 27/09/2015 08:33

This is pretty normal with Crohns, I've had many blood and iron transfusions over the years due to mine, he will feel so much better afterwards. If he has to get IV steroids then he will probably be admitted to hospital, if I remember correctly its 5 days of IV steroids and then an additional 2 days to keep an eye on you, so they will of course do the transfusion during his stay.

Pixi2 · 27/09/2015 08:38

It isn't as scary as it sounds. It's basically just a needle inserted into the arm, then you wait, ideally with a book, magazine, crossword etc. I think I had books and hot chocolate with mine (I've had 7 transfusions due to lack of iron in total). It's no different from a Saline drip really.

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