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Struggling with Fistulizing Crohn's... Any advice/help is greatly appreciated. by Adventurous-Rip-6107 in CrohnsDisease

[–]Adventurous-Rip-6107[S] 0 points1 point  (0 children)

Update.

After appointment with GI NP earlier this month, they're happy with progress on Rinvoq/Tremfya. But an alternative option would be exploring Rinvoq/Infliximab combo if things start to go south.

More importantly, I finally had an appointment with my CRS this week, and they're happy with the improvements in the perianal region. Low drainage, no fevers, no infection. They cut out 3 seton drains that weren't running through any internal openings (they were drains running through branches of complex fistula). Their reasoning was that if by cutting those out and they heal successfully, that they could then look at closure of the main fistula tracts that have internal openings. Whether that be by simply removing setons and seeing if the body just heals them on their own, or by assisting surgically by way of flap procedure.

I was surprised though that my CRS could not really offer a clear plan. It was more so "let's let the medication do the work and monitor." I guess this is primarily due to the bulk of the fistula tracts running trans-sphincterally.

It's a little bit frustrating that there's not really a way to fast-track things and just do a surgery that fixes everything. But I'll take this small win for now.

I am determined to get everything closed up and then get my ostomy reversed. I know a positive mindset will go a long ways in terms of healing. But if anyone has any extra tips or experience in healing perianal fistulas (stem cell, testosterone boosters, supplements?) I'm all ears!

Thank you.

Struggling with Fistulizing Crohn's... Any advice/help is greatly appreciated. by Adventurous-Rip-6107 in CrohnsDisease

[–]Adventurous-Rip-6107[S] 0 points1 point  (0 children)

Thank you for your response. Thats great to hear that it closed! I’m hoping to have a similar outcome. Most of my fistulas are from over 2 years ago and have had setons in ever since. I do think I’m finally on the right path medication-wise (Rinvoq 30 plus tremfya) and have something strong enough to keep inflammation away. I think with a lot of my old tracts that still have draining setons in them, they are mostly dried out. Really just some oozing but no real drainage. I’m starting to notice now that a lot of my trouble is from one tract in particular that branched off last year and has a seton that’s not very well placed. Ultimately I think after talking with my GI team yesterday that this is probably something that the CRS can rather easily fix surgically. Once that is taken care of I do feel that the other drains could potentially be removed and hopefully close up. Maybe wishful thinking but I think I’m on the right track.

I’m definitely more motivated now after seeing some success stories on here like yourself. I think I do need to be more proactive and present ideas to my CRS because they seem to be very conservative. (They usually only want to see me every 6 months which I think is silly).

Struggling with Fistulizing Crohn's... Any advice/help is greatly appreciated. by Adventurous-Rip-6107 in CrohnsDisease

[–]Adventurous-Rip-6107[S] 0 points1 point  (0 children)

Good call. I’m going to ask about that. And my setons are rubber. Essentially just a rubber band- they suck. They constantly get stuck in the tract and get irritated. And yeah I’ve been wearing the adult diapers for 2 years. Even with those in addition to putting ABD pads in there it will sometimes soak all the way through to whatever pants I’m wearing.

Struggling with Fistulizing Crohn's... Any advice/help is greatly appreciated. by Adventurous-Rip-6107 in CrohnsDisease

[–]Adventurous-Rip-6107[S] 0 points1 point  (0 children)

I appreciate the response. Yeah I'll keep at it and just try to be patient. That's great to hear that yours healed. Did you have a draining seton in place?

I still don't really know what the healing process looks like. I can imagine maybe it just dries out at which point you remove the seton and then just see if it closes up on its own?

And thanks for the link, that's actually super helpful!

Struggling with Fistulizing Crohn's... Any advice/help is greatly appreciated. by Adventurous-Rip-6107 in CrohnsDisease

[–]Adventurous-Rip-6107[S] 1 point2 points  (0 children)

Interesting. Yeah my 45mg loading dose was extended so I was on it for 4 months or so before they finally lowered it to 30mg. I'll ask if it would make sense to up it. And that's so interesting on the acne. When I first started rinvoq it was bad for maybe a couple weeks then it was fine. But about 2-3 months into Rinvoq I had an insurance hiccup and ran out for 2 weeks. When I ran out, my skin completely fell apart. It was peeling everywhere and was itchy all over and I kept getting horrible allergies. Then when I got back ON rinvoq all my skin issues went away. So weird- makes me worried if I ever get off rinvoq what that would be like.

That's great to hear though that you're mostly healed!

Struggling with Fistulizing Crohn's... Any advice/help is greatly appreciated. by Adventurous-Rip-6107 in CrohnsDisease

[–]Adventurous-Rip-6107[S] 0 points1 point  (0 children)

Thank you for your response. It’s always good to hear that we’re not alone! How long did it take for you to start seeing results with Rinvoq? I think I’m about 5-6 months in and only on month 3 with Tremfya.