Fistulating and Perianal Crohn's Disease

Hi, I'm 22 and was diagnosed with both fistulating Crohn's disease & perianal Crohn's about a year & a half ago. So far I've had 4 operations for abscesses- 2 were lanced & packed, 1 lanced with a draining tube and the latest was lanced with a seton put in plus temporary stitches & a draining tube. I've been on Humira and Purinethol for over a year & despite still having the seton in I am now looking at a fifth operation. I am incredibly unwell after each procedure, to the point of vomiting due to the pain & am sick of having all these painful procedures only to have the abscess form months later. Has anyone had the same issue or had a procedure they felt really worked for them? I'm sick of this interrupting my life.

5 Replies

  • I am so sorry for you , but please,please,please read my answer above. I wonder why the administrators don't have an automatic reply button offering the details of St Marc's At Northwick Park. It is brilliant. It is the world specialist centre for diseases of the colon and environs. Please, please use it. It really is Tops for Bottoms

  • Unfortunately I live in Australia but thankyou so much for replying! I really appreciate it. Had a fifth surgery yesterday to change the seton & there's no abscess so that's a relief :)

  • Hi hun, I cannot imagine the pain your in. I had only 1 fistula yrs ago and fear getting another.

    How often are you on your Humira? and at what dose? Humira can be taken weekly. Its obvious the medication or doses you are on are not working effectively.

    there are newer biologics that may be worth trying. I used to be on infliximab but ended up with drug induced lupus. Humira is working ok tho (touch wood!)

    I know my brother used to have fistulas, and when he had an ileostomy (20 yrs ago) the fistulas healed up and never had them again. his disease was severe and biologics were not available then though so surgery was his only option.

    Hang in there x

  • Thankyou so much for replying :) Fistulas are an absolute pain, I ended up having 3 come back within the space of 6 months so hopefully you should be fistula clear!

    I'm currently on 14mgs of Humira and have to take it every fortnight but sometimes I do wonder if it's working as I do still get the abdominal cramps, sometimes quite often.

    I've definitely been doing a bit of research and read an ileostomy has worked wonders for most people. I actually had a fifth surgery yesterday to change the seton & by some miracle they didn't find anything new so maybe the Humira is working to some extent!

    Sorry to hear about your health issues too hope they only continue to improve x

  • Im on 40mg humira every 10 days, it can be increased weekly & to 80mgs, so you def have room to increase dose and frequency.

    fingers crossed tho its working for you x

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