Oh gosh that’s not good, have they tested for peri anal crohns as I have a couple of fellow crohnies whose intestinal tract looked fine and healthy but they had numerous fissures and fistulas that wouldn’t clear up. They had the fissures tested and had blood test and they have peri anal crohns. Which can be treated, hopefully the blood test will show something as you are right it’s certainly not the norm for a fistula to turn into this.
I will def read your blog and hope to hear of your successful healing

I'm sorry to hear that you're still not able to heal after so many interventions. This forum thread may be of help to you: my-break-through-with-stubburn-fissures-and-fistulas-t2112.html

Draingirl, thank you for describing your story in such an eloquent manner. I feel your pain. I also read your blog and its well done.
I am suffering from an anal fistula as well since June 2017 (mid-level transphicteric, around 30% of external sphincter involved). My case is fairly difficult but not extreme by any means.
However, my fistula is high enough that I decided to take a conservative path as a first approach. So, I had a draining seton in July 2017, a FiLac surgery (laser sphincter saving surgery practiced in Europe only) in October 2017 (which did not work) and again a FiLac 15 days ago! Unfortunately, the Filac most likely did not work the second time either (I will be sure in regards to the result in two weeks). So most likely I will have to go for the more traditional (butchering :)) approaches such as cutting seton this time. Your story is just sad for a young girl your age and I really empathize with your situation. I am 47 with three kids (one is not so far from your age) so in a way better equipped to handle such incidences, but the truth is nobody is prepared to handle such a malady. It is devastating but keep in mind that if you persist in the end - in all likelyhood - you will suceed. Most if not all fistulae are curable. Once a person beats this (it can take 6 months or 5 years) he/she will be a stronger person for sure. In any case it is not the end of the world. So keep walking.....

Thank you for the kind words, it's hard to imagine my life any other way right now but it used to be normal! I feel envious when I look at everyone around me and while they're probably struggling with their own problems, odds are that they're not dealing with THIS. I look forward to the day that I can look back at this.

It is tough, but you'll get there! The Fistula loses in the end.

On Thursday, I had my sixth treatment for my complex anal fistula. This was a relatively small procedure, an in-office "deroofing" (as my CRS puts it) of a part of my fistula that has not healed completely. The procedure itself was a little uncomfortable, but the first where I was awake - the worst was hearing the tearing/sizzling sound my flesh was making as she was cutting the skin. I've been doing ok, I couldn't really sit on the first day but I've been able to go back to work after a long weekend, I was even able to sit at the movies! Once this heals, I'm hopeful that I will have definitive treatment and get my setons taken out... I'm not sure what she's going to do... the flap?

I'm feeling so disappointed that I'm looking to another summer of limited activity, I don't feel particularly comfortable swimming in a lake or public pool with open/draining wounds. Biking is completely off of the table (it's been nearly two years since I've been able to ride). When you live in an area where you only have 3 precious months of nice weather, it's a real bummer to miss out on another summer. Life is short.

I'm reminded that exactly a year ago, I underwent my first treatment not really knowing what I was getting myself into. I don't have the 10 inch drain anymore and hopefully, I never have to go through something like that again, but I'm still going through this. I'm amazed at how we're able to adapt to lousy situations, it's just like my life is supposed to be inconvenienced by my butt all the time, there is no other way.

I'm trying to stay hopeful, I'm getting to the end of the tunnel, but I can't hold my breath because this year has been filled with constant disappointments and setbacks. I'm so deep into it with my CSR that it actually infuriates me when someone tells me to go to another surgeon - my treatment is conservative and I'm fine with that, I don't want to have to wear diapers for the rest of my life.

I've been a member of this forum for 1 year, 5 months and 23 days. Yesterday, I had what will hopefully be (I'm looking at this cautiously) my last surgery for the treatment of my complex horseshoe fistula - a mucosal flap advancement. Based on the last time I posted, this has been my 8th procedure.

In August, I had another fistula treatment that went fairly well. It went well enough for my surgeon to book the mucosal flap advancement when I saw her at the end of September.

I hope that a year from now, I can post an optimistic end cap message to this thread about how the procedure was successful but I can't look too far ahead because we all know how finicky fistula treatment can be.

Before I was wheeled into the operating room yesterday, I pleaded to my CRS not to give me another drain. As the topic of this thread, for my first procedure, I had a 10-inch long latex drain that caused me terrible contact dermatitis. I had read that drains were common for the mucosal flap advancement procedure because they help drain the nasty stuff out of the "cave" behind the internal fistula opening.

I woke up with a drain, but this time, it was a tiny little red drain, kind of like a cocktail straw. This drain will be removed Friday morning, so it's definitely an upgrade from the first drain I had for a month. Initially, I felt a lot of pressure in my anus but it doesn't hurt that bad... yet. I haven't had my first BM (feeling pretty anxious about that) and the wound is still so fresh that a sitz bath doesn't hurt yet. I believe that my last seton has been removed but I don't have the heart to look at the area yet, and I was too out of it when my surgeon visited me after my surgery to ask.

For this surgery, I was sent home with cipro and flagyl which is new to me, I'm usually not on antibiotics after my procedures. Hopefully this helps with the healing and keeps infection away.

I will post an update after I have my drain removed. I hope that someone who is just beginning their journey with an anal fistula treatment can read this and prepare themselves for a long journey. I'm balancing optimism while mentally preparing myself for disappointment.

It all sounds very promising. Good luck with that first BM and I hope that you come back soon to report that you're fully healed!

Good luck draingirl, all the best & keep us posted!

I figured I'd post an update. It's been 10 days since my mucosal advancement flap. I think that since I'm used to the area being prodded at and the recovery, the pain has been pretty tolerable. I took some Tylenol for the first few days, and there is some pain after a BM but overall it's been ok. I had the drain taken out last Friday, while I'm worried that it was taken out too early, I also wasn't into the idea of having to go in weekly for drain checks.

Since I had the surgery I am farting a lot, like all the time. This seems to happen after each procedure, does this happen to anyone else? I'm not usually much of a farter. I'm also having a lot of draining, brownish/yellow, I know that this is typical for after a surgery but I'm hoping it subsides over time.

Overall, I'm happy to have the setons out and hoping it's over. I'm seeing my CRS in January for a follow-up... only time will tell if I can be "normal" again!