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A new fistula

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Crohn's Disease
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Posted 7/20/2023 3:19 PM (GMT 0)
MRI fistula results came out. I have again an intersphincteric fistula and it is fibrotic. I don’t know whether tthe old fistula reopened or it’s a new one but I was told in 2019 after being on Remicade for 3 years that the fistula had healed. I’m really devastated. I don’t think Stelara is doing anything.
Haven’t seen my GI yet but he told me before I had the MRI that if it turned out to be a fistula that we would place a seton. How effective are setons in healing fistulas? How long is the recovery time from the surgery?
I have constant pain. How can I deal with it?

Post Edited (minnietoty) : 7/20/2023 7:25:21 AM (GMT-8)

Posted 7/20/2023 4:37 PM (GMT 0)
Minnie, I can't answer your question on whether this is a new or the old fistula.

There are different types of setons, length of recovery varies depending on the type of seton & the patient.

Haven't seen setons discussed here in a few years, but there are lots of stories in the archives. You can use the search box top right, type in crohns & setons to find those posts.

Let us know what your dr has to say.
Posted 7/20/2023 8:37 PM (GMT 0)
Oh no Minnie! I'm so sorry - one of my biggest fears is the fistula return - among so many other things. I would be beyond devastated too. Did you try Healing Bottoms turmeric suppositories? I think I recommended that before.

Doesn't sound like Stelara is working. Not sure what your dosage is but are you at 4 weeks? The other option is Skyrizi.
Posted 7/20/2023 10:39 PM (GMT 0)
Minnie,

So sorry to hear this news. Prayers coming your way. Know nothing about setons, but hope you can get good results.

Tom.
Posted 7/21/2023 2:15 AM (GMT 0)
Minnie,

Darn! I am so sorry!!

Fistulas are so difficult. My GI and CRS have always told me that fistulas would probably reopen when biologics fail.

I never had a Seton so I can't help you there.

Sending lots of prayers your way.

Clo
Posted 7/23/2023 6:28 AM (GMT 0)
Will think good thoughts for ya😉
Posted 7/23/2023 6:37 AM (GMT 0)
Thank you all for your wishes. Saw my GI and I was literally devastated. He reminded me that he had explained to me before that treatment might fail and yes I failed treatment and it is a fistula. I would continue taking Stelara as I have just started taking it last February. So, we need to give it some more time to work and he can’t let me try a new biologic every couple of months as I will exhaust them all. I will have also to resume taking the antibiotic as I do have severe inflammation. For the perianal pain, he recommended solpadeine.
Posted 7/23/2023 1:15 PM (GMT 0)
I’m so sorry you’re going through this Minnietoty. I hope you I get some relief soon. Can you put any topical cream/ointment on the perianal area? I use Calmoseptine (kind of a menthol ointment) or Tucks lidocaine cream (only available as part of a Tucks multi pack with witch hazel pads but if you can find it it’s worth it). Both of these have been game changers for me, better than prescription ointments for topical pain relief as it numbs the whole area. Obv different from strong painkillers for internal pain but that is tough too for a bunch of reasons, especially constipation.
I hope you get some relief, I am in the middle of changing my biologics and I know it’s not easy so hang in there.
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