Fistula flares with bleeding and hardness off and on, when to head to an ER?

[jimlaman8]

I think this may be common, but wondering how others that have fistula's fair day to day year to year.

In 2014 I was diagnosed with crohns after dealing with ibs for years, that same year developed a perennial abscess and then fistulas with setons.

A few years later had those setons taken out and been on biologics for most of that time until recently. Put a pause on stelara.
After this pause i had really no issues and little drainage surprisingly.

Until the last week or so, the fistula area got hard and sore (likes its done alot in the past), so much i told my gastro they gave me cipro said to get an mri and see a surgeon (doing this week).

As of now its started bleeding (which again its done in the past off and on) but quite a bit though eased up now.

You read horror warnings about bleeding and going to the ER but I dont know if thats really needed or how to tell (no fever just nauseous from the cipro i think).

Anyone go through the off and on flare ups like this? At what point is it better to head to the ER? In the past i'd just wait it out and it would subside again. I assume i'm always going to be in this on/off boat of issues though

Thanks in advance

 

[DCCrohns]

So sorry you are going through this. Fellow fistulizing CD patient here (who just had issues and an EUA to assess/resolve). If you have this type of Crohn's, I definitely recommend building a relationship with a CRS you trust who can help you assess and work with your GI doc. I have been on antibiotics (along with Stelara and Imuran) consistently to keep infections in check for me for years, which has mostly worked.

I think the biggest concern is that you have an abscess that could result in a new tract or the re-opening of a tract. A CRS can advise on what time you should give antibiotics to work vs. if it makes sense to do a physical exam, MRI or EUA.

ER docs are great at so much but this disease is so challenging and nuanced, I'd go to a specialized CRS vs. ER if you can.

Sending healing vibes!

 

[Lisa]

HAs Remicade ever been discussed? I had fistulizing disease, and thankfully was able to hold off on having any surgery until I finally was able to get on Remicade. That cleared up my fistulas within a couple of months.....and now have been on it for ummm....coming on 16 years now.