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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:
ohtheholidays · 27/09/2015 08:43

I have ulcerative colitis,mine's got horrendous over the past couple of years,if I was told I needed a blood transfusion I would have it.

Good Luck to your son OP chrons and ulcerative colitis are horrendous conditions to live with,I struggle and I'm 40 now,I was diagnoised when I was 24,I hate the thought of any child going through what I go through.

Original poster
Spermysextowel · 27/09/2015 08:55

Would he be fairly mobile while he had the transfusion? He has to go to
the toilet a lot & he's worried that we'd have to rely on the Thunderpants (as he calls the Tena Man pads).

OP posts:
EldonAve · 27/09/2015 09:02

yes you can usually shuffle off to the loo while still attached to the drip

Jellybean83 · 27/09/2015 09:04

Yeah he will be able to unplug and wheel it to the toilet.

Witchend · 27/09/2015 09:10

I was told that I would have a transfusion if I hadn't been pregnant at the time, so they would try and bring my levels up with iron tablets. I was down to 4.6 and felt absolutely terrible.
Bt iron tablets have their own issues, as well. I felt much better after a couple of days of tablets but I was only just in the normal level a month later when they tested again.

Original poster
Spermysextowel · 27/09/2015 09:11

I'll start packing a bag for him; seems like it's the best option & not as scary as I thought. Many, many thanks to all those who have given advice & reassurance.

OP posts:
watchingthedetectives · 27/09/2015 09:15

Anti-TNFs - infliximab and Humira are next treatment up from things like azathioprine - depends a bit how far down the line you are with treatment.
The Crohn's and Colitis UK website is very helpful and accurate so worth looking on there for sensible advice.
If they think he needs iv steroids they maybe thinking about increasing the treatment.
PM me if you would like to - I know quite a lot about this (will be out most of today but back tonight)

Original poster
Spermysextowel · 27/09/2015 09:37

His treatment until a month ago was topical as it was confined to a small area but then he was started on 40mg of Prednisolone but with a fast wean so was down to 25 til yesterday. Now we're back to 40. I'll pm you when I work out how!

OP posts:
specialsubject · 27/09/2015 10:06

blood for transfusion is incredibly heavily screened now, thanks (Sadly) to some things that went wrong in the past. And yes, in the UK it all comes from volunteer donors.

he won't be able to give blood. That is the only future limitation.

have a pint on me. Smile

Iloveonionchutney · 27/09/2015 10:12

I have Crohn's too and as I'm pregnant at the moment have had two iron infusions recently, I can't tolerate any oral kind of iron. The transfusion definitely sounds the better option for him, he'll feel so much better for it.

PoppyFleur · 27/09/2015 10:19

OP - a blood transfusion may sound scary but it really isn't. Right now your son must feel so tired, lethargic and breathless, after a blood transfusion he will feel so much better, he will have energy again. Just to add, your son will be mobile during the transfusion.

Original poster
Spermysextowel · 27/09/2015 10:46

He is all of the above. He lays in bed or on the sofa & having a shower is an effort. We'd planned to ask to put him on a Modulen diet, as this put him in remission for 6 yrs so I was totally unprepared to learn we're way beyond that.
I can't donate blood as my type means that I have to be called on if there's a disaster, but thank you to all those who do donate to make
this possible. I'm so grateful for the help I've received that I have to go & have another little cry in the shower

OP posts:
lavendersun · 27/09/2015 10:56

You poor thing OP, and your poor son. I had a B12 shot on Friday and the week before I had to have a snooze daily, felt rotten. Still feel tired ish but better.

DD had to have a couple transfusions when she was in the NICU and I know how distressing I found it as a mother, but after every one she was a different baby for a while. Much easier to deal with when it is me having them.

Think about planning something nice for you both to look forward to once it is over. It is definitely the best thing for him.

brokenhearted55a · 27/09/2015 11:03

This reply has been deleted

Message withdrawn at poster's request.

lavendersun · 27/09/2015 11:08

She did broken, told him I was in danger of damaging my heart if I carried on as normal! Think she did it to scare me because she knows I have horses and various animals to look after and that he works away from home!

To be fair, I couldn't have worked, at all.

WhoTheFIsJeff · 27/09/2015 13:51

Mine was 79 after having my baby, the hospital told me I was going to have a transfusion, then decided iron tablets would do and I spent months feeling rubbish. Even now I'm not back to normal a year later.

brokenhearted55a · 27/09/2015 15:08

This reply has been deleted

Message withdrawn at poster's request.

Scarydinosaurs · 27/09/2015 15:14

I've had iron infusions and they take a few days to kick in, blood transfusion is a much better option.

I have UC and have had the 'need to go' whilst having it done (and waddling about as pg) and just had a room with an en suite.

Good luck! He'll feel wonderful afterwards!

Junosmum · 27/09/2015 16:31

It does sound drastic, but unfortunately your son wouldn't be able to absorb the required amount of iron orally, and iron injections just don't work well. Oral iron tablets could also have a negative effect on the chrones.

MrsP777x · 27/09/2015 16:34

When I had my ds, my iron levels dropped to 5. I had to have 3 blood transfusions to get my levels up to a somewhat normal level. It is honestly nothing compared to what you think it might be like. There's no pain, no funny/iffy feelings, it's just like being on a saline drip or something like that.
I actually felt really humbled having the blood transfusion as it made me think someone has given up their blood for me to feel better and to get better. Without it, I would have been seriously a lot worse off.

Hope that helps in some weird way?

ThumbWitchesAbroad · 27/09/2015 16:42

Transfusions work so much faster, so much better if his Hb is really low (and they usually only suggest transfusion when it drops below 7.5).

I remember once we had a patient who came in and her Hb was around 2. We were amazed she was still alive, and ran the blood sample twice, phoned ICU to ask if they'd taken it out of the arm with the saline drip in (happens occasionally) but no - they said she was the same colour as the sheets. Just happened that she was also a Jehovah's Witness, so no blood transfusion allowed, nor any type of other human-derived product - she was in ICU for over 6 weeks while they got her Hb back up to a reasonable level, where anyone who could have had a transfusion would have been fine within a couple of days.

I expect he'd be unable to give blood himself anyway later, as a Crohn's sufferer; so he might as well have the blood himself and feel better. Hope he does feel MUCH better very soon :) Thanks

CrohnicallyAspie · 27/09/2015 18:10

As a Crohn's patient he can't give blood ever anyway (as things stand), the transfusion would make no difference there.

IV steroids are amazing, but be warned they have drastic effects on your mood and behaviour (far more so than the tablets).

When I had them I wasn't hooked up constantly, I had a cannula fitted and a syringe full of steroids were given via that 4x a day, only took 5 mins and that's going slowly.

Good luck and I hope he's feeling better soon.

Lilymaid · 27/09/2015 18:29

I am having a transfusion tomorrow - cancer affects my Hb levels. Two units which will take a good 4 hours. My level on Friday was 8.2 but as my previous transfusion was last month, the level goes down rapidly.
Shall take in a magazine/iPad and watch day time TV whilst trying to keep up with work e-mails.
I take sachets of Spatone usually to try to maintain levels.

chrome100 · 27/09/2015 18:34

I was recently given iron tablets and my level was 7. I didn't realise that was considered so majorly low! Should I be worried? I feel OK.

MimiLaBonq1 · 27/09/2015 18:40

Blood transfusions are easy. He can read a book and should be able to go to the loo as it is just a drip really. I had many for different reasons but just looking in the mirror before and after and I could see the difference immediately let alone feel it.

It is wonderful that we have this option. Definitely not a big deal to go through though. My only regret is that I can no longer give blood.