First timer could do with advice!

[ScottBoyd]

Hello! I'm new here so bear with me!

I've had symptoms for about 8-9 years and was diagnosed with crohn's and perianal crohns about 4 years ago. I've been on remicade for about 2 years and things were going great until recently!

Since June (ish) I've been brought forward to every 6 weeks and had a dose doubled 6 weeks ago today(10 mg per kg).

My usual symptoms are tiredness, cramps in the colon and recently a deep setted pain behind the left buttock and the remicade doesn't seem to help that.
I've had umpteen abscesses and setons in place.

The conversation has begun about surgery and I'm expecting it in feb next year, it's a bit worrying that I've tried aza remi and pred and the only thing that seems to work is flagyls. Any other treatments that people are having?

I've never hidden my illness but I've never seen it as a problem. I accept that it's tough sometimes but I refuse to let it get me down even if I'm I'll!

 

[ScottBoyd]

Forgot To add that recently my eyes and lips are inflamed and cracked and I find it difficult to eat anything that isn't tasteless and bland!

Does anyone know of any treatments for ulcers on lips?

 

[robbo87]

Hi scott and welcome to the forum, sorry to hear that the remicade and other drugs arent keeping control of things so well anymore. But if surgery is needed hopefully it will sort things for you. In the past I've struggled with sore eyes and the mouth ulcers I've found to be an absolute b1tch! In my experience using things like bonjela etc soothes for a little bit but it doesn't get rid of them, with me they sort of only go once everything else starts to settle down. Anyway I hope your docs get to the bottom of it soon and get you sorted!

 

[ScottBoyd]

Hi Martin, thanks for the reply! Stings probably doesn't cover it! But Bon jela makes it worse..... I hope the surgery is reversable but I'm fed up with stays in the hospital!