Fistula Nightmare

[CiaraG]

Hi All

I am going through hell at the moment with Fistulas, I have 4 at present, and they are being treated nearly 4 years by seton stitches. In June 2013 I had a colostomy fitted to give my body a break & help the fistulas heal, but to be honest it has just caused more problems, I got one right beside my stoma now too. My consultant has put me on a new drug called ustekinumab (hope thats spelt right), has anyone else been on it. At this stage Im thinking of going to a different country for another opinion as I am not getting anywhere in Ireland. Can you guys recommend anywhere ?? I know fistulas are very complex but there has to be a better way of living that this.

All your advice would be greatly appreciated.

Thanks
Ciara G

 

[Lisa]

Hi Ciara, sorry to see you are going through this for so long! Has Remicade (infliximab) been mentioned to you at all?

The drug you mentioned is commonly known as Stelara, and has been in trials I think for Crohsn'... http://www.drugs.com/cdi/ustekinumab.html

 

[QueenFox]

That certainly does sound like a nightmare, I hope healing will come quickly! I don't have experience with that particular drug and hope it does start to work.

Have you tried any other medications for treating the fistula's? As pasobuff mentioned remicade is usually seen as a very good drug option. There has also been trials of as well as having remicade infusions that it can be injected directly into fistulas near stoma's...still in trials but I've read some good progress on this.

Perhaps you could contact the Irish Society for Colitis & Crohns Disease to discuss some other specialists in different parts of the country? Other local support groups or hospitals may also be able to let you know about recommended consultants.