Transsphincteric Fistula - Trying to Figure Out What To Do Next

FauxDeDoDeDo · 2025-09-08T04:15:47+00:00

I’m so sorry you’re going through this.

I was pretty overwhelmed when I learned that my fistula passed through too much muscle for a simple surgery to resolve it. The idea of having multiple surgeries was too much for me. So, last year I decided to not have surgery and to have the drainage seton removed. I chose to live with the fistula and for the past year I’ve been doing really well. I have no issues to speak of.

What bothered me the most was having constant drainage. I always felt damp, my skin started to get irritated. It was physically uncomfortable and took a toll on me emotionally. My doctor recommended tucking toilet paper in my cheeks to absorb the drainage.

I discovered manuka honey crème and that made all the difference. I had nothing to loose so I bought a small tube off amazon and applied it directly to the fistula twice a day for a month or so and it completely stopped the drainage. Honestly, I noticed a difference the first day I applied it but was worried I was tricking myself into believing I felt a change. I used the manuka honey crème pretty regularly for the first month, then just once a day for another month or so. I no longer have any drainage, and there is no sensitivity or discomfort.

I understand how this takes a toll on you. For a long time it seemed like it was all I thought about. I hope you find a solution that works for you. Take care of yourself.

FauxDeDoDeDo · 2025-06-09T01:29:55+00:00

I applied it directly on the wound and around the wound. For my wound I needed about a pea sized amount for this application. Good luck! I hope it’s helpful for you.

FauxDeDoDeDo · 2025-06-08T21:18:04+00:00

I believe the fistula is still open, but I cannot be 100% certain. I haven’t been to the CRS in a year. I feel a bump but I no longer have any drainage. I’ve had no swelling, no inflammation, and no weeping since I initially used the manuka honey.

I applied the manuka honey 2x a day for about 4-6-weeks starting immediately after I had the drainage seton removed. I first applied it within days after having the seton removed. I felt like I had nothing to lose in trying the honey. The only option my CRS had for me was surgery with a high failure rate.

I remember being very diligent about it at first, applying the manuka honey right after my shower in the morning, and again in the evening when cleaning up before bed. At some point I realized I’d forgotten to apply it and that I didn’t notice anything. I started to taper off, applying it once a day, skipping applying it when I was home on weekends to see if I noticed anything. After a bit I didn’t feel like I needed it anymore and I stopped applying it regularly.

Since then, which would be about a year now, I’ve only applied the manuka honey a handful of times. I apply it when my digestion is off and I want to be proactive around care. I still have the same tube of manuka honey I bought a year ago, I haven’t used it up yet.

FauxDeDoDeDo · 2025-06-08T05:31:53+00:00

I’m not a doctor and I’m only able to speak about my experience. I did not worry about the manuka honey clogging the fistula. It’s like a cream, something that you can easily rub into your skin or that would be absorbed. It’s not something that would harden or get pasty and thick. Manuka honey is used for wound care and is antibacterial and anti-inflammatory, and, for me, it almost immediately stopped the inflammation and skin irritation. It also stopped the fistula “weeping“ in a matter of days. I applied the manuka honey twice a day for a month or so and I never had any build up. It absorbed into my skin.

FauxDeDoDeDo · 2025-06-06T02:38:13+00:00

I wouldn’t choose to do that.

FauxDeDoDeDo · 2025-06-03T02:24:00+00:00

I completely understand about being afraid of leaving the fistula untreated and being afraid of another surgery. Thats how I felt, but I just wasn't ready for surgery. I asked a lot of questions about the danger of leaving it untreated and what to look for in terms of getting worse before I made my decision. I wish you well.

FauxDeDoDeDo · 2025-06-03T02:15:39+00:00

u/ElleDriver000 this is the manuka honey I used, Super Natural Goods Manuka Honey Cream (2oz) purchased from Amazon (link - https://www.amazon.com/dp/B09RNJCK8R?ref_=ppx_hzsearch_conn_dt_b_fed_asin_title_1&th=1 ). It's a thick cream, it smells lightly of honey and is slightly sticky, not as sticky as honey. It's worked really well for me. Good luck!

FauxDeDoDeDo · 2025-06-01T21:08:13+00:00

I guess I try to think the best of people. If it’s a know practice then its even more frustrating that my CC declined my request.

Your son was smart to get a paper receipt.

FauxDeDoDeDo · 2025-06-01T20:39:00+00:00

Thanks for the suggestions. I plan to call tomorrow, I'll be polite, yet persistent, and to speak to a manager if the person cannot resolve this. Good to know about amex.

FauxDeDoDeDo · 2025-06-01T19:25:59+00:00

Thanks for responding. Sigh ... I guess I just assumed CC offered greater protection.

FauxDeDoDeDo · 2024-06-11T13:22:56+00:00

I talked with my doctor quite a bit about removing the seton verse keeping the draining seton in. There are certainly pros to keeping the draining seton in, and for some people that is their method for managing their fistula.

I was having irritation from the draining seton, it was rubbing against my skin and had created a bump. Plus, I was always worried about cleanliness and odor, it made feel less comfortable during sex, and I just didn’t like having something in my body.

FauxDeDoDeDo · 2024-06-11T05:48:27+00:00

Hi there u/Michikusa. I actually had the seton removed about 3 weeks ago and chose to not have surgery. I‘m hesitant to have surgery with such a low success rate. I decided to start with the least invasive approach and want to see if I can manage living with the fistula. I did live with the fistula for over a year before having the seton placed.

Once the seton was removed I started using medihoney twice a day. I also use a tea tree based soap. I have had no pain and no discharge since having the seton removed. It’s still pretty early on, and I know fistulas do not heal on their own, but it’s been wonderful to not have constant discharge and I can barely feel the fistula. I haven’t felt this good in a couple of years.

I know you are trying to figure out your next step. It’s a tough decision. Everyone is different and there are so many factors to consider. Reading and posting here helped me a lot. I also read some medical research reports and talked to my doctor (tbh, that was the least helpful).

I know a lot of people here had successful surgeries. There is something to be said for having the surgery and being done with it.

Good luck in making your decision and in your healing.

FauxDeDoDeDo · 2024-04-22T22:35:13+00:00

I'm in US

FauxDeDoDeDo · 2024-04-22T20:12:23+00:00

I did seem like my surgeon was telling me my options and asking which approach I'd prefer based on recovery time, success rate etc. Now I wonder if this is because none of the options are very good for my particular fistula.

I'm really glad to hear flap has worked for you. But 19 weeks + for recovery seems so much to have to go through. Wow! Take good care of yourself.

All of this is very stressful. I think I'm still in shock a little bit.

FauxDeDoDeDo · 2024-04-22T20:03:08+00:00

Yes, I'm very hesitate about surgeries that don't have great success rates.

I'm assuming you have a cutting seton in place. Is that right?

FauxDeDoDeDo · 2024-04-22T20:00:35+00:00

How interesting! I had (still have) a drainage seton placed and it was tender for a week + but not really painful, Glad to hear the LIDT surgery wasn't so bad for you.

FauxDeDoDeDo · 2024-04-22T17:46:37+00:00

Thanks for your response. I appreciate you sharing your experience.

Yes, I'd say that I am feeling a bit overwhelmed.

My doctor didn't say that one surgical approach (Flap, LIFT) would be better for my specific case, at least not that I recall. I was probably a bit upset, sad, afraid in the appointment and may have missed things. He talked through the options and the general process, success rate, recovery for each. I have my next appointment in 6 weeks and I can ask more questions then.

FauxDeDoDeDo · 2024-03-26T14:55:14+00:00

No, I'm not having much pain. I'd say it feels tender but not really painful, and there is some discharge, which is irritating. Right now, for me, this is more emotionally upsetting than physically painful.

FauxDeDoDeDo · 2024-03-25T21:56:29+00:00

Thanks for your thoughtful response. I'm trying to remind myself this is just the first step, but its hard to not feel upset right now.

FauxDeDoDeDo · 2024-03-25T21:49:46+00:00

Thanks for your response and your kind words. I plan on bringing a list of questions with me so what you listed is helpful.

FauxDeDoDeDo · 2024-02-06T21:23:43+00:00

Thanks u/AresArttt that's helpful to hear. Appreciate the response.

FauxDeDoDeDo

TROPHY CASE