Don't know what's going on

[Dottiedot]

Hi everyone just would like some advice

I was really unwell in November losing blood had a ct with contrast and really suffered after with crippling stomach pains which made me feel faint. The ct showed a collapsed right side of my bowel so I was booked in for a colonoscopy which was carried out 10th December. The colonoscopy was only partially carries out as soon as the camera was put in they saw severe inflammation so it had to be stopped. They took biopsies and the following week I had the most blood tests taken that the blood test centre had seen on one visit. I was prescribed 4800mg mesalazine per day for 8 weeks. I still feel very unwell to the point where I'm having mobility issues because of the pain. I've not been given any results but today received a letter from the consultant saying I've been referred to rapid ibd clinic and he has made some suggestions no mention of biopsies or blood tests

Am I right in feeling really forgotten about and let down or is this normal, on top of this I'm also being treated for polycythemia vera so don't know if it's connected i would appreciate to hear your experiences

Thank you

[Kelly100]

It does sound like you need something more than mesalazine to be honest.

I think there’s probably a very good chance you have ibd, especially as they’ve seen inflammation and your being referred to an ibd consultant.

I think you should probably get in touch with the consultant and ask if he could prescribe steroids to tide you over until you see the ibd consultant. I’m really surprised they didn’t do that. This would also give them the hurry up in bringing your appointment forward. Failing that maybe your GP could help if you explain the situation.

It is quite a long time you’ve been waiting for treatment and answers more so while still experiencing symptoms which can’t be nice.

I hope things get sorted for you soon

Kelly

[Dottiedot in reply to Kelly100]

Thank you for your help and advice not too long to my app now x

[Frasina]

If you have been taking 4800g which is high dose mesalazine and it is not helping after 8 weeks then you should be escalated on to steroids of some sort alongside the mesalazine (although they may reduce this down from 4800). Your colonoscopy was almost 2 months ago and they saw a lot of inflammation - you should not be suffering like this so please asap get on to the IBD clinic and tell them how severe your pain/symptoms are. They may just squeeze you in sooner rather than later... or you can contact the consultants secretary and ask if they can fast track you. If you are still suffering badly in a couple of weeks with no joy, just go to A and E especially if the pain gets really bad. They will at least see to your meds etc..I hope you get sorted very soon! x

[Dottiedot in reply to Frasina]

Thank you really appreciate your response and advice x

[Knip]

Dottiedot, It is best to ask for a copy of any letters sent to your GP at the time of your appointment. that helps to keep you in the loop as to what is going on. I could always kick myself when I forget to do this!

[Dottiedot in reply to Knip]

Thankyou I will definitely do that