TMI warning. Does this photo look like a 'normal' amount of blood loss for an IBD patient?

[Seatbealter292]

I have the delightful combination of crohns and colitis. I've had it for 25 years but in the last 3 years have started to experience bleeding for the first time. It started off as every 4ish months, it's now almost daily. I'm on every medication they can prescribe but I'm still passing a lot.

I'm at a loss really. Struggling to get hold of my consultant, GP useless and I know there's no further meds for me to try.

I'm interested to know if you have bleeding with IBD would you consider this amount 'ok' or would you be alarmed? I pass this much around 2-3 times per day. Sorry for the horrible photo. That's toilet roll in the pan.

That's a lot. You need treatment, fast.

If you have a consultant (you should have) call their secretary and explain the situation and ask for an urgent appointment or for them to prescribe over the phone.

In most cases if you treat quickly it can stop things escalating.

You are likely to need an examination or colonoscopy too.

Don't let it slide. This needs treatment (fellow Crohns /colitis suffererer for 40 years).

Thankyou for your reply.

I am having treatment:

Humira
6 MP
Mesalazine
Steroid enemas
Oral entocort

I phoned my IBD nurse 3 weeks ago, she did some blood tests, stool sample. Results all ok.

I've tried every way to contact my consultant but had no response yet. I dont really know what more they can do for me.

I've got no perspective of what's considered ok. I've told them I'm passing a lot and frequently but they just put me on another course of enemas or entocort. It stops for a few days and then comes back again.

I'm flipping exhausted, trying to do life with this going on!

I also had a colonoscopy when the bleeding started 2-3 years ago.

I'm sorry. That's awful for you.

It's a nasty disease.

I'd keep trying the consultant and escalate to PALS at the hospital if they are ignoring you. All gastro consultants know how important it is for swift treatment when things are escalating with your symptoms. The NHS is under such pressure but it's really unacceptable for them to ignore you. I know from personal experience with this as mine wasn't properly treated in the early days and I ended up seriously I'll in hospital for ages. Now I'm on it in a flash as soon as it starts to rumble.

Are you taking iron? If not I'd consider it as the blood loss may make you anaemic and that will make you tired. I was told to eat iron rich foods and drink orange juice at the same time because it helps absorption.

You could also try a FODMAP diet to see if that helps? One friend also swears by fermented foods and meditation which can help quelll the anxiety that inevitably goes with it.

And if you haven't already, go to crohns and colitis website - they offer help, support and guidance.

https://crohnsandcolitis.org.uk/info-support/become-a-member?gclid=Cj0KCQjw756lBhDMARIsAEI0AgmX0Ash5ATRzyKH-SpcGeBUUSJIrK5wSBnfnzxdojeiYtsuODtWDwaAhgcEALww_wcB

NICE protocols will tell you how often you should br having a colonoscopy. Mine used to be annual but are now at every 3-5 years. It's worth checking that out too so that you can see what's expected for your circumstances. www.nice.org.uk/guidance/ng129/resources/crohns-disease-management-pdf-66141667282885#:~:text=Offer%20monotherapy%20with%20a%20conventional,in%20a%2012%2Dmonth%20period.

I'm here if you need to chat /rant/cry.

Sending unmunsnetty hugs. (Unmunsnetty is in my spellchecker 😂😂😂😂).

Thankyou for your reply, I really appreciate your kindness! I'm going to kick up a fuss on Monday, I'm off work so I can dedicate the whole day to getting through to someone. I've bled an awful lot today. Iron levels are apparently fine, I don't know how!!

I would expect another colonoscopy if it's been that long since your last one

Do they have a specialist nurse service? The IBD standards suggests this should be in every gastro service. Ask for them to do drug and antibody levels, and then consider a chance of biologic. A flexi wouldn't go amiss, if you have colonic disease? There are multiple classes of biological that act in different ways, and it may be that you have developed antibodies to this one.