left almost suicidal after fistula surgery

Posted , 9 users are following.

hi everyone, some advice would be very appreciated, 

almost 2 years ago i was in incredible pain to where i couldn't move, i went to the g.p who said i had an anal haemorrhoid and gave me the medication to treat it at home, 5 days passed and the pain was getting worse, i was unable to go to toilet for 3 days, i ended up going to a walk in clinic who said straight away i had an abscess and surgery was performed that very same night, i was told in most cases, this turns into a fistula which needs a follow up surgery a few months later,. after second surgery everything seemed to be fine, i followed up with the nurse for just over a month for redressing of wound, . now wound completely healed the nurse said, but there was still constant discharge being released from wound or surrounding area, i have had over 7 MRI scans since then and they are telling me the wound has healed and they don't know what this is, and 1 doctor suggested that i should have to live like this for the rest of my life, I have no idea what to do, i cant live a life like this, id rather be dead. 

if anyone has any advice on anything please let me know as I'm all out of any sane thoughts 

thanks in advance 

0 likes, 9 replies

9 Replies

  • Posted

    Hi, there - fistula is bad, but not that bad! It seems you are not given good information. Check this forum - it’s mentioned a few times - a Facebook group called rectal fistula group is one place to get yourself a lot if info and support. Many fistula do heal, alhough not without efforts. You also should see a good Colon Rectal Surgeon (at least that what’s called in the U.S.) to correctly detect what type of fistula you have and go from there (location, length, etc) and possible cause if there is one, like Crohn’s, etc. You will then find out your options! People do heal from it!
  • Posted

    Correction - facebook group is called Fistula Support Group ( colonrectal)
  • Posted

    Hi john

    I have my fistula for a year now. Yes it is painful, it is uncomfortable and yes it is a long road. I had my first op back in september2017 and seton was inserted. Since then, simptoms are much milder but I still have constant discharge. Now I am waiting for second surgery called LIFT. I heard that it can be very painful and also not succesful but at least I am trying my best to sort this out.  You are not alone.  Just be patient, try to eat well so you digestion is smoth. And don’t put your life on hold. Go wherever and whenever you would normaly go. Dont make decision to stay at home and think of that all the time.  Stay positive . You’ll sort this out . Everyone has something to worry about. At last but not least it is not life threatening and you’ll get your life back. 

    Good luck 

    • Posted

      Hi I had op on Sunday for a perianal abscess they have put seton in told I have to go back in 8 weeks . Not opened my bowels , yet worried it will hurt . 
  • Posted

    @penguin59394 Hi penguin, thank you for the link and reply, i will check it out, im from the u.k and we are having a N.H.S crisis, its very hard to get to see any kind of doctor, the surgoens that performed the surgery wont even have a meet with you, they have special assistants, which was the one who suggested i have to live like this till i die, im currently waiting for the results from my last mri scan, once i see the results i will see where i can go next.

    @bianca58003  Hi Bianca, thank you for replying, i never heard of a LIFT procedure, after they drained the abscess the first time, all the pain went away, i have never felt pain, only when i work for very long hours it sort of feels like carpet burns between the cheeks due to the discharge moisture, and it gets a bit sore, but never any serious pain, which i dont understand, im  being told everything has healed, and they dont know whats wrong with me, very frustrating and depressing, Im trying to do most normal things, but i cant bring myself to get in a relation ship or have sex as i feel dirty. im just praying it goes away 

  • Posted

    Hi John,

    I know this is a few years late, but i want to share protocol that I think immensely helped me heal from a fistula operation

    • get a tube of Povidone iodine marketed as "Betadyne". This is an amazingly good antibacterial, it penetrates the skin, and has no known side effects.

    • get a set of surgical gloves from your local pharmacy and irrigate your rectum and anal canal with the Betadyne twice a day, try to get to the (erstwhile) internal opening of the fistula - once before sleeping, and once in the morning.

    • after taking a poo, at all times follow up with a shower and the Betadyne.

    I had two surgeries (ten years apart, the first was a fibrin glue plug) and followed this protocol and both times at the one week follow up, the surgeons exclaimed that it was healing much faster than expected.

    Hope this helps.

  • Edited

    I hope since then you have healed! I just wanted to share my "happy end" with a fistula to give hope to anyone suffering with this. when my issues started I was very desperate and sad and upset, and I went from a positive, happy and healthy young woman to a miserable wreck. i had an anal fissure that was extremely painful and was first misdiagnosed as a hemmoroid. i was in so much pain I cried a lot but then after about 3 weeks the gp confirmed I have a fissure (after me suggesting it and having made 2 trips to A&E because of my unbearable pain) and the GTIN cream helped me to heal -took a good 2-3 months. when I thought I am out of the woods I had a small lump behind the anus that burst - another trip to A&E confirmed an abcess. i got a round of antibiotics from the GP but no proper examination - symptomps got better but still had pus and blood after weeks. No doctor from NHS checked on me after many many phone convos (oh yeah this all happened during covid so getting an appointment was hopeless). After more online research and self diagnosis I told the GP I think I have a fistula, and finally they confirmed it is the case. I got a referral to surgery, in June but was told not to expect to be seen any time soon, as my condition is not life threatening. the fact that I lived with constant pain, irritation and became a complete mental wreck didn't seem to bother any doctors on the nhs. I thought long and hard and decided to sacrifice a LOT of money and go private as I didn't want to wait and suffer further. It was the BEST DECISION EVER. I went to a special colorectal clinic. At my first appointment the doctor explained to me what I have after a quick and painless exam and without I could blink twice he put in a seton. I was lucky to have a small and low fistula, and didn't even need any numbing for the seton insert. the insertion was uncomfortable, but nothing compared to my pains before. the whole procedure was 10 mins. i was told I will need a small op to cut the fistula open in a few months. I lived with a seton for 3 months - I never felt it, but the drainage caused me skin irritation quite a bit, sudocream helped a lot and I was constantly showering, I just wanted to feel clean. on the Op day , I simply walked in, didn't have to do any prep (no fasting, no laxatives or anything) I got 2 numbing injections and I had 2 small laser cuts. it took 15 mind and I could walk home!! I felt nothing , not even when the numbing wore off. I had some bleeding and fluids for a couple of days from the wound, just had to keep some gauze pads in to absorb this but ZERO pain after the op. I was dreading going to the toilet the first time after the op as I practically had an open wound but It was suprisingly painless. I had to shower after each time I want to the toilet but it was nothing compared to the horror I was expecting. I can't express my relief after 9 months of suffering. I never regret my decision to go private and even though it cost all my savings the expertise of the doctors and the relief of having my normal life back was worth it. If you have any anal problems my advice is don't wait - press your GP to properly investigate and treat it asap. I would have never had a fistula if my fissure was treated quickly and properly to begin with. And ask for a specialist - don't let a general surgeon operate your fistula. have someone who has done 1000 fistulas before doing it, makes all the difference. If something that caused me 9 months of living like a zombie can be fixed by 2x15 min procedures then it is unfair to be made to suffer:( PS: I eventually got an Nhs appointment for a preliminary consultation. the date would have been 5 month after the GP referred me, and 2 months after my final

    private Op...I'm glad I didn't wait.

    Good luck to all of you who were desperate enough to find this forum, and hoping all of you will get well soon!

    • Edited

      Hi, thanks for telling you story. I have been having similar problems with NHS and am thinking of trying to go private. The clinic you used sounds amazing, please could you let me know which one it is? I'm in London. Thanks!

    • Posted

      i had abscess years ago which i now think has developed fistula.

      I think fistula has reopened.

      it healed but now is sore. I am so unhappy.

      I would love to find more information on this clinic and going private, please any help would be grateful

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