u/MacBoom357

For those of you following along with the epic saga of my several year fight with my fistulas, I have an update.
My last post ended with my April 2026 Singapore flap. I am home after a week in the hospital. Again, I just want to post so that if someone else finds themselves experiencing complications, they know they aren’t alone. Two weeks ago, I began to have some wound dehiscence at the graft harvest incision site from my latest surgery. That site is the crack where my thigh meets my body. Basically, as the stitches dissolved, the skin wasn’t healed enough to remain closed. I began getting literal holes in my incision site. I went from one hole to five in 72 hrs, despite complete bed rest. Those holes got bigger and joined each other until I had one small hole (dime sized), a medium hole (an oblong 50¢ piece) and a very large (half a dollar bill) sized hole from the front of that crack of my thigh to where that crack meets my butt cheek. When it finally opened, I was unable to stop the bleeding, it was just pouring out. I went to the Emergency Dept and was admitted that night to Inpatient care. That was last Wednesday. I came home yesterday (Tuesday). I have a wound vac in place. They placed it initially on Friday and it has been definitely improving the healing. I am happy to be home in my own bed. I’m a tough cookie, this too shall pass.

I just wanted to jot down my journey so far for anyone who is struggling with this same path. I’m 45F and I feel like I was completely unprepared by my surgical team for what to expect. I am hoping to share some of what I’ve experienced for others so they can be better prepared than I was.
It took me multiple appts over 18 months at my GYN (strange discharge and perianal/vaginal swelling) and then giving me MONTHS of antibiotics for them to finally diagnose a complex perianal/vaginal fistula. I had my seton placement and removal in Fall of 2024. I had my fistulectomy in Jan 2026, with a muscle graft taken out of my left leg and ileostomy creation. April 2026, I had a revision Singapore flap because while my fistula was healing really well, the graft had sunken in a bit and there was still a shallow “hole” needing to be filled in. I think this one has been the hardest.

Procedure breakdown:
Seton - sucked. No comfortable way to sit for several weeks.
Fistulectomy with muscle graft - it’s definitely uncomfortable but tolerable. Expect to be laid up in bed for at least a week.
Graft harvest from thigh - hurts. The drains are a giant pain in the ass.
Ileostomy - is much more emotional than you expect. It’s overwhelming and kind of takes few days to really get used to. Also, the bar they put through the stoma when it is first healing to keep it from falling back in has a little retractable barb on the end. I didn’t know that mine was digging a hole into the flesh of my stomach, I didn’t know I wasn’t supposed to be feeling a burning sensation all the time. If you feel this, tell your wound care nurse. I had a hell of a gouge in my stomach that burned like fire because of that bar digging into my stomach. Other things I didn’t expect - changing my ileostomy bag every other day at the beginning. Feeling faint the first time I had to do it myself. Figuring out the hard way why we change our bag first thing in the morning before eating or drinking anything. 😂 And pretty soon, you are so fast and efficient, you are changing that bag like a NASCAR pit crew in under 90 seconds. 😂
Singapore flap - expect to be laid up for a couple of weeks. You will have the most uncomfortable drain ever lodged in the crack of your thigh and up into the fat pad of your pelvic area. It feels like a large mule kicked you in the crotch. For women who have had babies - it was like that feeling of bruising and pressure that makes you feel your heartbeat thumping in your crotch for the first couple weeks after birth as you heal.

Recommendations:
Get at least one gel cushion to sit on for when things like riding in the car or sitting in a waiting room are unavoidable. You will NEED the cushion.

Men or women: get some period underpants. Not kidding. You will have all kinds of blood and discharge from your surgical site for several weeks as it heals. After a while, pads chafe like crazy, especially if you aren’t used to wearing them (men, postmenopausal women) Just get you some period pants. I prefer the boxer briefs myself. Also, no chance of your pads shifting and leaking blood on your mattress at night. After having all my poor bits chafed to hell from weeks of wearing pads, I got my period panties. What a magical difference in comfort! The extra padding makes it a bit more comfortable to sit.

Gel ice packs - trust me, PostOp swelling is no joke. I tried regular ice packs first, they were too solid and hurt. The gel packs are the way to go.

Peri bottle - a small handheld bottle with a nozzle for cleaning the area after using the toilet. You won’t be able to wipe with toilet paper so this is much easier to just gently spray warm water to clean the area.

If you will have a leg drain, get a pair of leg warmers or knee socks. Yes, they do have elastic and Velcro bands you can rig your drain bulb to but they are uncomfortable for sleeping. I had an old pair of leg warmers in the closet that I found and it was more comfortable to tuck my drain bulb in my leg warmer than to wear that scratchy elastic band on my leg. If you have a shorter drain (I had a short one for my second graft), you can safety pin the bulb to the hem of a pair of baggy shorts.

Keep a box of abdominal pads on hand. They are my favorite dressing. They are a thick, soft wound dressing that really can be used for just about any wound.

Ileostomy folks - rolls of dog poop bags are cheap and easy to use for disposal. They are the perfect size for bag changes.

If even one person finds this info about my experience helpful, I’ll be glad. He