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Advice needed | Living with an anal fistula

Posted , 93 users are following.

moosecraftsman
moosecraftsman

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

0 likes, 236 replies

236 Replies

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  • maggieJJKT
    maggieJJKT moosecraftsman

    Posted

    I had a nodule 3 years ago, and did not pay much attention to it, now it was confirmed as Fistula, the doctor put a seton in last sept, and it made me feel that i was disabled, as if i walk for 5 minutes, my bottoms hurt, like nappy rash. I have to work from home, so i do not need to move so much. 

    After the operation in sept 2016, there is small spot grow on my other good bottom, it hurts. But when i went to see the doctor for recheck in november 2016, she said it is just a small spot, no worries. Then i complained about the pain seton causes, and  the doctor is scheduled me to another operation in 4 days time, either lay it open or do something else depnds on the progress, i am very scared, and i wonder if i need to delay it? My worry is that the operation can make it worse. 

    By the way, I did something extreme, i water fasted for 21 days end of nov and begining of dec, and i saw a lot of discharge coming out, and the nodule got much smaller, unlike before, it just flares up and then got small from time to time, but this condition is only 1 month, i do not know if it is stable, so my thought is that if i need to wait, to see is the seton will do more magic although i still cannot move like normal with seton on, but at least it will not be worse. I did not like to be operated on, and the whole procedure is scary, the  anaesthetic injection was so cold, and the operation room was so cold, and I do not know what the doctor is doing on my body, and after the operation, the bleeding and pain. 

    So anybody can give me you  view on this? T

    • jeffwever
      jeffwever maggieJJKT

      Posted

      Hello,

      I'm in the same boat as you. But I had over 10 surgeries for the same fistula. The more you get the bigger the hole gets inside. The reason why your in pain all the time is because feces is getting in the hole where the seton is and causing an infection. You need to get the flap surgery to cover that hole up and get rid of the seton. Before you do that is to be on a clean diet. No more junk for food. Then if it hasn't calm down then need to be on antibiotics, if that calms it down and there is no inflammation, get the flap surgery. Stay on clean diet forever. If you take pain Meds, make sure your using mirlax or natural way ground flaxseeds in a smoothie twice a day. Good luck.

    • michael90139
      michael90139 jeffwever

      Posted

      can you elaborate on what you mean by clean diet?

      I've been 7 weeks since surgery and now I have pain and pus back again for the past 4 days so back to see my GP today. Hoping it doesn't turn into a another fistula or abscess again.

    • maggieJJKT
      maggieJJKT jeffwever

      Posted

      thanks. yes, i am always on clean diet, and sometime cannot understand why i got this as i eat health and sleep early, and do sports. 

      My doctor cut it open, so now hope it will heal ok, but i can bearly walk now 

    • maggieJJKT
      maggieJJKT michael90139

      Posted

      meaning no fast and junk food, taking natural and high fibre, non-processed fresh food, and eat regularly not too much, i suppose 
    • chris9001
      chris9001 maggieJJKT

      Posted

      My colo-rectal has consistently said that the peri-anal/rectal fistulas - at least in my case - are not habit or lifestyle induced.

      In the 2 years prior to my symptoms, I had been eating much cleaner - no fried food, higher fiber, balanced meals, low caffeine intake. I was also exercising 3-5 times per week and had lost 40 pounds.

    • maggieJJKT
      maggieJJKT chris9001

      Posted

      so it is fate, genetic bound? somepoint the immunity system down and prestage fistulas kicks in then bidy cannot get rid of, then got fistula?
  • Whartie2202
    Whartie2202 moosecraftsman

    Posted

    Hi I'm new to the group so not sure if I'm doing this right. What antibiotic treatment have any of you found helpful? 

    • sian61733
      sian61733 Whartie2202

      Posted

      I had 2 types I tock from the doc wouldn't really wanna advise a type gp would be the best to ask i was on anitbotics for 70 days I'm still waiting for my op almost 6 months

    • steph-
      steph- Whartie2202

      Posted

      I was prescribed numerous short courses of coamoxiclav, whenever the abscess around the fistula got increasingly painful.

      However, when I spoke to a surgeon, they were very surprised; they thought antibiotics were unnecessary.  I'm really starting to think the only solution to fistulas and abscesses is to have everything opened up, drained and cleaned up, and allowed to heal slowly.  I've had this for 8 months with no sign of improvement. I have a draining seton in place.

    • Whartie2202
      Whartie2202 steph-

      Posted

      Hi, thanks for your reply. I had an abcess in Sept 2015, ended up with a fissure and three fistulas I've now had 6 ops and have a drainage Seton in place am back to consultant in April to discuss having a collagen plug. 

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