Ulcerative colitis

[Catnip22]

Just looking some advice where I can go next, but will give back story to for context.

I was diagnosed with Ulcerative Colitis (Proctitis) back in 2015 privately as NHS waiting list was so long.
Got referred back into nhs, and since then I've had one checkup with the consultant (same one as private) and had a second sigmoidoscopy too. No active disease was found at 2nd sigmoidoscopy.

They added to my GP notes that I could have my prescription as required which was going fine up until recently. (Pentasa enemas and oral granules)

I've been having bleeding for a while now and my medication isn't really stopping it anymore. This is the only real symptom I've ever had apart from the odd dodgy stomach and tiredness. GP did bloods ages ago and said was slightly low but iron supplement would be more detrimental to stomach etc. I think this has probably changed too, but don't want to take supplements without proper advice.

My main issue is I don't know who to contact... Do I speak to a GP first, an IBD nurse or go straight to consultant's secretary? I've never even met the IBD nurse but can find the hospitals contact online. Do I request bloods, speak to consultant or ask for camera to be done again.

I just feel lost, I would probably struggle on except I was talking to a colleague today whose relative has crohns and "fell through the gaps" as she was like me in that she battled on but again no one came looking for her. I think I've probably been forgotten. My colleague said keep an eye on it, keep chasing things and don't let yourself be forgotten like their relative.

Sorry for the ramble but any advice is much appreciated!!!

I would email the IBD nurses. They can liase with the consultant as needed. GPs aren't as specialised in this area (I'm one and we don't have many UC cases so best to get expert advice. and my son has just been diagnosed with UC privately too!! )
Note if you end up on steroids (oral) you are entitled to the antivirals if you catch covid. My son is on steroids and he caught covid.

Might be worth getting your faecal calprotectin measured too as a guide to how active your disease is. Good luck it's awful but don't sit on those symptoms too long.

Contact your consultants secretary who will pass on your details to them who will decide whether to see you themselves or to get the IBD nurses to contact you.

Thanks for your advice everyone!

I have emailed the ibd nurse and she is brilliant. She is arranging calprotectin tests, bloods and an additional prescription to try out! Fingers crossed!

Ds has UC. He takes a daily medication that keeps him in remission. He has a supply of an oral steroid that he is to take immediately any flare begins, while he is trying to access medical attention. He has been told not to wait until he is seen by a doctor, but to start treatment immediately - they can change it if necessary. IIRC his daily med is Octasa, and his emergency flare-up med is Clipper.

Is it worth asking your UC team about this sort of regime so you don't end up untreated again?

Thanks, I am getting suppositories sent to me, not sure if steroids or not and keep going with my current meds. Hopefully they will work, if not they will hopefully get me onto a similar program like your son!