Hi, @AliceMay. Have you tried rectal mesalamine, such as Canasa suppositories or by enema? It can take a while to work, but if you respond well to that you might be able to taper the prednisolone successfully. I’d much rather have mesalamine side effects than prednisolone. If you really do continue to need steroids long-term you would likely have fewer side effects with budesonide (Uceris rectal) than prednisolone. The drug brand names may be different in the UK.

The surgical treatment for cuffitis is pouch advancement surgery.

Hi Scott,

Thanks so much for your reply it’s much appreciated. Unfortunately I’m allergic to mesalamine but I will ask about budesonide thanks for the tip!

Can I ask what pouch advancement entails? It’s not a term I’ve come across before, have you had experience of this?

Thanks

Alice

I’ve read about pouch advancement - fortunately for me my experience is vicarious. It involves (more or less) detaching the pouch from the (troublesome) rectal cuff, removing the rectal cuff, and hand-stitching the pouch to the anal canal. It’s often accompanied by a mucosectomy, which is scraping off the inflammation-prone mucosa. This is a technically difficult procedure to perform well, so if at all possible it’s best to find a way to obtain the services of a surgeon with plenty of experience doing these.

Remicade worked for me to get me into remission for both pouchitis and cuffitis.

Jan

Hi Scott,

Thanks for the explanation it makes perfect sense and explains why my nurse said I’d have to referred to a different hospital for a consultation rather than use a surgeon at mine. It sounds like a really complex procedure and quite an intense surgery.

Alice  

Hi Jan,

Pleased to hear remicade worked for you! I tried it a couple of years ago but had signs of anaphylactic shock on my second infusion so had to stop, very frustrating as I’d heard it can work really well.

Thanks

Alice

@AliceMay posted:

Hi Jan,

Pleased to hear remicade worked for you! I tried it a couple of years ago but had signs of anaphylactic shock on my second infusion so had to stop, very frustrating as I’d heard it can work really well.

Thanks

Alice

@AliceMay Remicade is the biologic medication most likely to create an allergic response, due to the mouse antibody it’s derived from. That bad reaction to Remicade sounds quite scary, but probably wouldn’t occur with a different biologic. Trying other medications is less risky than surgery.

Yes, there are many biologics appropriate for IBD.

Jan

Thanks both! I’ll have a chat to my nurse she said I’d exhausted my options with biologics but I’ll mention it again and see if there’s anything else she can recommend

Alice