My issues might be completely unrelated, but I thought I’d make a post and see if anyone else has experienced the same thing because I feel like it could be connected. I have Jak2 Essential thrombocythemia (ET) and I was diagnosed in October last year. Alongside the high platelets, I also have low ferritin (but I don’t take iron tablets because of the side effects) and apparently basically zero iron stores and ever since my levels have got worse (higher platelets and lower ferritin) I’ve experienced increasingly frequent and otherwise unexplainable constipation? I feel like it’s a bit of an embarrassing problem to have but I thought I’d be brave and share anyway and I wonder if anyone else has had the same issue? I have a feeling they could be connected but I’m not entirely sure? I would also appreciate any advice? Thanks!
Hi @jamie17 You are indeed very brave to bring up the subject of bowel issues. It’s a topic which we are often very reluctant to discuss and yet bowel issues can be a source of misery for the person undergoing them. Thank you for raising the issue; it may encourage others to share their experience in the spirit of peer support which is one of the aims of this forum.
I’m afraid I have very little to offer by way of insight into either low ferritin or constipation, since I’m not aware of my ferritin levels and although I do experience bowel issues from time to time, my primary issue tends to be the opposite. That is to say I’ve had IBS for many years. However - strangely - since starting to take hydroxycarbamide in September last year, the frequency of IBS flare-ups has decreased significantly. May just be a coincidence, but I’ll take it as an unexpected bonus.
Very best.
Aidan
Hi @jamie17 - thank you for openly talking about the constipation you are experiencing - it’s really nothing to be embarrassed about - it happens to us all - but it is important to talk about it - you don’t have to suffer in silence.
I’m not a professional so can’t offer medical insight, but I hope others will take your lead and share their relevant experiences.
Have you spoken to your care team? It’s always a good idea to let them know about all the symptoms you have as they will often be able to help. You can also speak to one of our specialist nurses over the phone or via email on 0808 2080 888 or via support@bloodcancer.org.uk.
Let us know how you get on.
Maggie