Bleeding again... Starting to lose hope

Hi all,

So I'm fed up! I've been doing really well. Managed to finally get off pred just over a week ago. Was only thinking few days ago how good I felt and had basically no uc symptoms. This morning I go to the toilet and bam there's blood again...

I've been on humira 9 weeks on standard 1 injection every 2 weeks. Also been on 6mp for nearly 3 months though had to reduce dose to 25mg + 1ppmg allopurinol after 8 weeks as apparently wasn't metabolising it properly. Was also using budenofalk enemas up until a week ago.

I'm at a loss as to what's going on. Does this mean neither humira nor 6mp are working? Could this really have happened because of reducing steroids from 2.5mg to 0? Or because I stopped enemas?

I really don't waht to go back on pred as was stuck on it 7 months and had really bad side effects. I'm feeling really low. Only been diagnosed 7 months and feel completely overwhelmed and like nothing is going to work for me

Has anyone experienced this/have any suggestions?

Thanks

Thanks John. That's what my consultant has just said. It's weird because all my test results including fecal calprotectin are normal. I'm waiting on blood test results to check humira levels and depending on those may need to go to weekly injections. Thanks for your reply as always.

Not knowing your entire history my suggestions are:
-mesalamine enemas really helped eliminate bleeding for me and others on the forum
-eliminate as much insoluble fiber in your food as possible, this was the thing that really helped my gut recover
-resistant starch foods also really helped (potatoes, rice noodles)

Good luck. Most doctors will not suggest diet modification but it has been my savior.

Hi Quincy,

I did try the salofalk foam enemas which were ok initially but then gave me severe cramping so i had to stop using. I then went onto the budenofalk ones which have been fine- maybe because they inject a smaller volume of foam?

My consultant has advised me to restart the budenofalk ones for now. At the moment don’t really have any other symptoms - had some pain this morning but been mostly ok apart from that.

I agree with advice above about enemas. In response to your specific question of going from 2.5 to 0 pred, NO, I don't think exactly that. 2.5mg is so low it is unlikely it alone was stopping your bleeding. But the return of blood could have been slowly in the works from an earlier point in you taper where you did drop below an effective dose of pred. When pred is removed that inflammation has to reassert before the blood. Ideally neither come back. For some both come back very quickly. I think for many, inflammation levels begin increasing during the taper if the other meds are not firmly on top of the inflammation. I think it often comes back slowly because the other meds are helping partly or nearly completely.

It does seem possible the Humira and thiopurines are not enough. Hopefully in time they will be enough. Or hopefully, adding enemas will be enough - and hopefully you might taper the enemas after some time to an occasional use.

good luck

I'd go back on the enemas too, and in the meantime, I'd do a recheck of my FCP and possibly do a check of levels/antibodies for 6mp/humira. Sometimes a bit of instability can be expected when tapering doses. It's possible you just need a few days to get back to normal, but I can't see any reason to stop using enemas if they are working for you.

Thanks everyone. I did the budenofalk enema last night and this morning didn't really see any blood, maybe a faint speck. So I guess that's good. I'm giving a stool sample today to recheck fcp. I had my humira levels checked last week but apparently takes 5 weeks to get results... Seems a bit ridiculous. Getting the test for my 6mp levels today. I'm just a bit concerned as the budenofalk enemas seem to work really well for me but pretty sure my consultant has prescribed the mesalazine ones which gave me bad cramps last time and concerned they won't work... I already take the max oral dose of mesalazine and that doesn't seem to do much.

hi you can get salofalk as a foam or a liquid. Maybe the liquid would be less irritating for you?

Sure. Btw it may eventually be an option to do humira once a week, if it is proving partially effective for you and there are no antibodies

I think my consultant wants me off everything steroid related as was on oral ones for 7 months and already used budenofalk for 3 months. I'm giving the salofalk ones a go for now
Seem to be leaking out.. Not really sure why as nozzle fully inserted. Haven't nt had any bleeding now for 3 days and no other symptoms hoping I'm going to be OK. Did my humira injection yesterday so will see if that helps. Thanks for all your replies