Does the leaking ever stop?

[ElectricTrees]

I've had Crohn's for about 6 years now but was only diagnosed in the past few months. I have a fistula and the leaking it's caused over the years has easily been the worst symptom of this disease. I've looked around online before to hear from other sufferers but it doesn't seem like there's any consensus on the best method to get it to stop.

I'll be starting remicade next month so hopefully that'll bring some relief but even that doesn't seem to stop the leaking completely from what I've read.

Is this something that I'll have to live with forever?

 

[sawdust]

Hello ElectricTrees, and welcome! If you haven't found it already, I would recommend checking out the Fistulas, Fissures and Abscesses subforum we have here. I think the methods doctors use to treat fistulas depend on lots of different circumstances in your situation. I think you'll find the conversations in the FF&A subforum to address some of those. :hug:

 

[AlliRuns]

Welcome! I had signs of Crohn's (fistulas) for seven years prior to diagnosis. Started Remicade 2 months ago and this is the first time in 7 years where I have seen improvement to my fistulas, meaning the size of them seems to be reducing. They are still draining, but I am hoping they will eventually close.
Mine use to heal over temporarily and the swell and burst every couple of days or so until I had setons placed and then they drained constantly even after the setons were removed.

 

[ElectricTrees]

Thanks for the responses. AlliRuns, it's good to hear that remicade has made some kind of improvement. Hopefully I'll have similar results when I start it. Good luck with further treatment.

 

[AlliRuns]

Good luck to you too! Hopefully it works for you.

 

[PsychoJane]

The best way to get over the draining and issues related to fistulae is really to get them out by fistulectomy when they are located in an area where the removal is actually possible. The Anti-tnf usually provides good results at closing them for the time the medication is working properly, it may be months or years and everyone of us is different relatively to that. Some will pretty much never build antibodies to their medication while others will build them rather quickly. Anyway, mine stopped leaking when I was on humira for about 8 months... Then I had them surgically removed. The perianal disease is more complex in that matter though...

I hope Remicade will work well and for a long time for you

 

[AlliRuns]

My fistulas reformed about 3 weeks after having fistulectomy.

 

[Sybil Vane]

Hi ElectricTrees! Welcome to the forum! I'm sorry about the fistula--they have to be one of the absolute worst thing about Crohn's.

I had a fistula that drained and within two Remicade infusions, it was gone. Best drug for fistulas out there! When it stopped working for my stricturing Crohn's, I switched to Humira and developed a fistula. I just had it operated on and hope it heals, but it makes me miss Remicade. I also had a small case of pyoderma gangrenosum and that cleared up on Remicade almost immediately, too.

Thinking of you and keeping my fingers crossed!