Advice needed | Living with an anal fistula

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Hi guys, I'm new to this site and have just got back from the hospital.

I had an external abscess around Christmas time which my doctor prescribed a course of antibiotics rather than drain it. The abscess popped after 3 days and I assumed I was on the mend. However the abscess bursting has caused an anal fistula.

Since the new year I have been to the doctors 8 times, spent 8 days in hospital had and MRI and finally day surgery 3 weeks ago.

The surgeon took out 2/3 of the fistula but could not take out the rest due to it's position within the muscle and fear of incontinence. Completely understandable. he placed a cutting seton in (I think that's what it's called) but this came out 5 days after surgery. I called the hospital and they said to wait for my appointment 2 weeks later (today).

My surgeon says the seton shouldn't have come out already as there's no way it could have worked so quickly. He's also not sure why it came out. I did barely anything for the first week after my surgery so there;s no way I caused it to come out.

Anyway, I'm back on the waiting list to have it all done again. No idea when that will be though so quite frustrating.

What I'd like is some advice from anyone if they are able to offer it. My life has been pretty much put on hold all year and I've not done most of the things I normally would. What advice do you have for living with a fistula? Should I change my diet? Can I drink alcohol? (haven't touched a drop since Christmas just in case), How much can/should I do physically? My sex drive and confidence are out of the window since all this has happened. With the leaking from the fistula and having to wear pads, I've also lost my dignity.

I'm really down in the dumps and could do with some help. I'm a 38 year old male business owner. I'm usually very outgoing, socially and work wise. I usually love meeting new people and doing all sorts of things but now I spend my days working from my bedroom. My wife and daughters forget I'm here.

Any help or advice will be very, very welcome.

Thanks so much for reading if you got this far rolleyes

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  • Posted

    Hi

    I know it's been a year since you left your message but I was wondering how you're feeling now, has the fistula gone? I'm also going through the same nightmare as you and it would be great to hear from someone who has experienced the same problems.

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    • Posted

      Hi

      I too have a drainage seton since December, op on 12 Dec and my 3rd op on 12 Feb to review the seton and clean out the fistula as close to the shincter muscle as possible without causing incontinence. The first 2 months the seton was so uncomfortable, since this surgery which has made the wound bigger (ouch) the wound is painful but the seton is ok. Still have daily dressings and packing, which has been incredibly painful each time!!

       Its just not good, cannot work so not earning, its been a nightmare.

      Going to see the surgeon on Friday to see what is the next step.  I think it will be to remove the seton and insert a plug in the fistula,  but this will be discussed with the surgeon.

      From the last op the surgeon would have inserted the plug then but he said the fistula was still too long. so I am hoping this next op is the last.

      Is this ever cured completely? Does it ever NOT reoccure?

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    • Posted

      Get the flap surgery not the plug or glue. Change your diet to very clean forever. I'm fighting one at the moment. I just need two month of calmness and the getting the flap surgery. It's the food your eating that keeps it getting it inflamed. Keep your stool soft. Good luck. We all need it!

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    • Posted

      The flap surgery is the gold standard for success long term. A plug can it blow through again then back to a seton. Do your research on the two and you will see. Once you get that flap surgery, you better eat right and make sure you study anti-inflammation in food and herbs. Keep us posted.
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    • Posted

      Hey Jeff I just wanted to say that I actually got the flap surgery and apparently for me it didn't work as I am currently having my fistula continue to drain after the flap procedure which was my third procedure in three years. So I think it depends on each person . I'm in a lot of pain almost they never even did anything about it

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    • Posted

      Do you eat right? How is your diet? It's only going to work if you stick to the a clean diet. Your chances are better. If you had piazza, dairy, breads, etc to cause more pressure in that area and yea it will fail. Please be honest and tell me your diet so we can help this guy decide.

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    • Posted

      No I was not eating correctly at all. Over the last 4 days I have been though and I've noticed a huge difference, it still drains but the pain has went down considerably. I've been ingesting turmeric,ginger,garlic,onion, and lemon in tea form and it has helped me a lot . Still got a long way to go though

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    • Posted

      No I was not eating correctly at all. Over the last 4 days I have been though and I've noticed a huge difference, it still drains but the pain has went down considerably. I've been ingesting turmeric,ginger,garlic,onion, and lemon in tea form and it has helped me a lot . Still got a long way to go though

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    • Posted

      I left a link a few days ago that would have help you but someone here that moderate these messages deleted it. Look up Healing Crohns Disease on Facebook. It's page that has the diet. If you can't find it let me know. Hopefully this doesn't get Deleted.

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    • Posted

      Hi

      Appreciate your information greatly and wanted to ask you your view on the following? I tried the diet mentioned in this facebook page a few years ago, I have IBS on top of when I had a perianal abscess so I am always willing to try anything. I went all out and bought the proper yoghurt maker and the books. What surprised me about this diet was the amount of sugar in it so much fruit, honey and cakes. The saurkraut and and yoghurt - for probiotic - made sense to me but I gave up on it after a few months because my body could not cope with that amount of 'sugar'. I really am interested to hear your view. Also to be aware, I had a message recently from someone who's had fistula issues for many, many years and flap and plug surgery but it did not work for them. I think this condition is different for everyone but I completely agree with you improving your diet is certainly going to help this condition. KR

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    • Posted

      I should add that I am not diabetic but if I have too much sugar then I experience diabetic symptoms. So this was mainly the reason the diet did not work for me. I also think this is the point with the perianal abscess condition, that the person has an underlying health issue, e.g. immune system is low and not functioning as it should, and that leaves us susceptible to the perianal abscess condition.
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    • Posted

      The logo is two hands holding the Earth. Starts out stating a Crohns Shake for breakfast then Chicken or fish with a side of green beans lunch then back to Crohns shake for dinner.
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    • Posted

      I would stay away from Yogart for sure but some fruit is ok like, pineapple, dark cherries in a smoothie. Strawberries are the worst. Sauerkraut I wouldn't eat either. People that are sick as us have to resort to the plainest diet ever and having a protein drink for breakfast and dinner would help with digestin.

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    • Posted

      Thanks for the reply. I was looking at the SCD group under this heading, have the right one now. Completely agree protein and vegetables are the easiest on my digestion. Simple and complex sugars just cause me big a big headache but do have a little fruit anyway. Oats and Flax seeds I can't do either, badly affects my skin so I use sesame seeds instead, good for calcium, zinc and iron. Cacao I need to be careful with too. Uni of californa did a study linking chocolate and depression. It has an upper and then downer affect on me but I think this is because I don't retain enough of other nutrients to be able to handle its affects. But great if this works for some people. Thanks for the info.

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    • Posted

      Search for Healing Chrons disease

      then select pages from the menu at the top

      it should then be the second entry on the list. A pic of the earth held in two hands with the description

      Healing Crohns Disease is my goal for everyone that has it!

      Hope that helps

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    • Posted

      Hello Jeff.

      I have had 3 very small fistulas from 1 perianal abscess. Im in the process of going with Natural healing. It is a very long process. You are completely right, change the eating diet. Im now Vegitarian & have been for 2 months. I had 1 seton that I made them remove 6 weeks ago, it made the entry lesion worse & pulled at it every time I moved, sat etc. The other 2 small fistulas were only into the soft tissue & they lay them open, unfortunately the surgeon missed this recent fistula that was slightly into the muscle so no laying open. I had thought of the lap surgery but wasn't sure how successful it was. The key is to keep stools soft...Ive had a Colonoscopy which is clear from any bowel diseases (no Chrones etc) to my relief. All these posts aren't recent, has everyone healed theirs?

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    • Posted

      Hello

      I healed through diet too and there are a growing number of us who have done this and are going through it now. Please feel free to pm me if you would like free advice while you go through this. My wee story is on the perianal abscess org site. It is possible to go this, it took me 2-3 months to do but I really put myself in fistula boot camp and ate a ton of veg, lots raw. Glad to hear you have no other underlying issues other than your immune system not coping with the initial infection. Diet might not work for everyone but it definitely will help. Best wishes for your healing. 

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    • Posted

      Hello there.

      Thank you for your reply. Although mine isn't a bad fistula it still gets agitated from time to time specially if i open my bowels more than twice a day.

      My routine is this. I'm a morning girl so first thing is the toilet (lol) using wet wipes (with no alcohol, fragrant free, soap free). Then a shower to clean the area with sorbolene (instead of soap), soap irritates, then a bath with Epson salts & a few drops of tea tree oil (100% pure), this has antiseptic which will clean germs out, then dry after with clean paper towel or soft toilet paper (dab don't wipe), then the best thing ever, put coconut oil on the area. I put this on as many times a day as needed, its a great healer & soothes the area. I have these baths twice to three times a day. I eat only Vegitarian, vegetables at least once a day, stir fry with water & butter or snack on some raw. Fruit is a must. Wholemeal bread. Salad. Eggs. No cheese, cheese is fatty & can cause constipation. AVOID CONSTIPATION....I have fetta. My favorite is Avocado smash (wholemeal roll, smashed up fetta & avocado on that with tomato & lettuce, yum). I make scrambled egg with grated fetta on top. Rolled oats (soak for an hour in water before cooking) with A2 full cream milk & manuka honey. Lots of water to drink, Im not a massive drinker of fluids so I try to have at least 1.8 litres a day. I treat myself to a glass of iced tea once a day. They say 2-3 litres but for me its not possible. I take coloxyl stool softeners just incase. Red papaya is a fantastic natural stool softener. Don't eat anything that won't digest. Capaicum (peppers) & cauliflower aren't good for the digestive system. Nuts must be soaked in water overnight to soften. I have Manuka honey (85+ MGO) in warm water twice a day, this has great healing properties & natural antibiotic.I try not to sit for long periods as this puts pressure on the area, sit as long as you're comfortable. Im an aged care nurse so on my feet alot, walking is also good for the blood circulation to the area. They say 3-6 months to heal so being patient is a must. I will be keeping on this routine for the rest of my life to avoid any relapse. ....feel free to message me anyone if you need to talk...

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