Crohn’s related anaemia

[Singlebutmarried]

Hi people

I’m waiting for an iron transfusion, have been for a few weeks, I’ve had them before and have regular blood tests and the last one on March 6 showed very low ferritin levels.

Had a restest done and saturation that should be 45% is down to 3%.

The IBD clinic told me to contact them if no appointment be last Thursday. I have done repeatedly and nothing still.

I’ve stopped driving as standing up makes me dizzy. Heck even sitting down makes me dizzy. If left to my own devices and I didn’t have a lively child to look after I could sleep for about 18 hours a day.

Thing is as it’s all ‘in hand’ do I call for an out of hours via 111 (not sure what they can actually do) or just carry on chasing through the gp and IBD clinic.

Just want to feel like I’m not on a merry go round.

Poor you. It's sounds as though the IBD team is overstretched. Do you have someone who can chase on your behalf?

I would send an email to the IBD team with 'urgent' in the the title.

And in case that doesn't work, I would also phone (and leave a message on their answer machine if no one picks up)

And I would also phone the consultant's personal secretary. The Hospital reception should put you through by phone if you don't have the number.

Good luck.

Hi OP, may not be helpful now I’m not sure, but my partner has Crohn’s disease, although he had an allergic reaction to the iron infusion, they also flagged his crohns wasn’t being managed by Humira.
He has started taking stelara, which has been amazing. Not anaemic anymore, not deficient in any vitamins, put on over a stone, eczema is gone and only goes to the loo once or twice a day (tmi?). Depending on what you take, that could work for you? It’s the first time in years he has felt energetic, and healthy. Possibly need to change your medication if you’re suffering so badly.
We realised once he had switched medication that there was so many obvious signs the humira had stopped working, turned out his body developed antibodies that fought the drug.

I ended up having a blood transfusion and in iron infusion on Friday. Went to a and e on Thursday night as I couldn’t get up my stairs.

I’ve now reacted to the blood transfusion (am on vedozlimimab) and had to have more blood taken today to rule out infection.

Back at Drs tmr