HealingWell
Search Close Search
☰

Fibrosis in uc

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/16/2020 12:03 PM (GMT 0)
Just had another discussion with my consultant (very, very unpleasant man!) who has refused biologics, offered steroids (didn't work last time) and kept talking about fibrosis causing the issues - I am still bleeding! Inflammation is clearly the most difficult aspect but he said this is probably the best result I'm going to get?? The Mercaptopurine after 11 weeks has not done much at all ...?? Has anyone heard of their consultant blaming symptoms on fibrosis in the rectum and left side?

Any thoughts gratefully received ... Ugh!!!
Posted 9/16/2020 2:35 PM (GMT 0)
I think you need to find a new IBD consultant. How frustrating!
Posted 9/16/2020 5:18 PM (GMT 0)
Sounds like a perfect @$$#*/% with brain strictures.

You do need another GI doc. I'm confused about the consultant part tho...does that mean you never see or talk to your GI?

Are you on mesalamines oral/rectal at all?

q
Posted 9/16/2020 6:30 PM (GMT 0)
Q - I think in the UK the term consultant is used for any specialised doctor, in this case a GI, to distinguish them from a junior doctor still in training (registrar)
Posted 9/17/2020 6:24 AM (GMT 0)
Hi all consultant is equivalent to GI in the states. He is so unpleasant that I consider his personality a disability! The nurses at the hospital when I had my sigmoidoscopy a few weeks ago made a comment about how awful he is to staff! I am on mesalazine enemas and will give things one more week, before going private! Unless there's another NHS consultant I can have. He said I can refuse steroids and would need a full colonoscopy before he would even consider remicade! I wonder whether this is down to cost?? I had remicade when hospitalised previously. Praying things improve ...

Good healing to all and greetings from the UK
Posted 9/17/2020 7:04 AM (GMT 0)
Is it an option to change hospitals (I guess not because then you'd have to travel?). Usually university or teaching hospitals have a better standard of care... I'm just thinking you don't want to have to pay for remicade as it costs around £1000 per infusion
Yes it's probably about costs for refusing remicade, and there was historically a problem in getting remicade licensed for colitis in the UK, but in this day and age a good doctor should really not be refusing it...
Steroids are more damaging than biologics in the long term
Good luck
Posted 9/17/2020 5:04 PM (GMT 0)
Isn't fibrosis just scarring? You get it when you have had long term inflammation. I never heard that it causes bleeding though. Do you have other symptoms besides seeing blood?

Did they do a test that can check to see if you are at the therapeutic level of Mercaptopirine? Also, what is the dose you are taking?
Posted 9/17/2020 9:36 PM (GMT 0)
PS re read your post. I did have a full colonoscopy before starting remicade. I think because they couldn't tell from my symptoms how bad the inflammation was (and hence if biologics were warranted). So that part is not such a bad idea.
Posted 9/20/2020 7:55 AM (GMT 0)
Hello fellow sufferers

Methinks the consultant is talking out of the hole we all use too much! I have spoken to a private consultant, who says there shouldn't be any problem in getting Remicade. Since then, the IBD team have said they will consider a biologic because I am refusing steroids. I may need a full colonoscopy but then everything in my life seems to be about 'taking it up the wrong'un!' I still have bleeding, cramping etc. I'm speaking to the IBD nurse tomorrow so I'm hoping they will action things ...

Thanks to all you UCers for the help ....

Cxxx
✚ New Topic ✚ Reply