How long have you had your fistula

[Kancer]

I am celebrating my 2nd anniversary since I first developed my fistula. Got 2 more, totaling 3 fistulas. No signs of progress.

Wondering if anybody out there suffered from this for this long and what was your road to recovery?

Completely worn out mentally

 

[Lisa]

I had mine for at least 2-3 years, once I went on Remicade (when my daughter was @6 months old) the fistulas resolved.

 

[Kancer]

I had mine for at least 2-3 years, once I went on Remicade (when my daughter was @6 months old) the fistulas resolved.

Did you have any other treatment prior to Remicade? The surgeons here in my country wouldn't operate on it at all. Seen many surgeons who says if it isn't causing any serious issues, there's nothing to do.

 

[Lisa]

For the fistulas, no - I did have regular check-ups with a surgeon to keep an eye on things, but never any mention of surgical intervention to try to 'fix' them. Mine were peri-anal and recto-vaginal ones too. I also didn't have any infections or other complications while I had them, which probably contributed to the monitor and see stance.....

 

[Kancer]

Hi @Lisa. Sorry, didn't see this earlier. I have decided to go the biologics route and will be meeting with my GI in 2 weeks. All 3 fistulas still leak green liquid after 2 years. I hope to have the ordeal behind me once i start on remicade.

Did your fistulas ever come back or did it fully heal? Are you still on Remicade as I am thinking of using it for a while after fistula closes (I will be paying out of pocket) hence cannot afford it for too long

 

[roya]

I had mine for one year (It was two or three years before my crohns was diagnosed.) Six or seven doctors told me that I need a surgery. I had a surgery and It took five months to heal after that. I haven't had a problem since then.
And my specialist doctor believes that it is not related to crohns because if it were so, it wouldn't go away so easily.

 

[JasonBourne]

Hi @Lisa. Sorry, didn't see this earlier. I have decided to go the biologics route and will be meeting with my GI in 2 weeks. All 3 fistulas still leak green liquid after 2 years. I hope to have the ordeal behind me once i start on remicade.

Did your fistulas ever come back or did it fully heal? Are you still on Remicade as I am thinking of using it for a while after fistula closes (I will be paying out of pocket) hence cannot afford it for too long

I’m curious to know what was recommended and what you decided. From most everything I’ve read, the current practice is for long term biologics, and that coming off may be bad, or potentially worsen symptoms. Also worth noting, that once off for a while, you likely cannot ever go back to that biologic, as antibodies will have developed.