Advice needed | Living with an anal fistula
Posted , 93 users are following.
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
0 likes, 236 replies
smiler2015 moosecraftsman
Posted
Its been a while since your post (with no replies until now). I would love to hear how your getting on and hope you have moved forward and recovered.
jhon74741 smiler2015
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smiler2015 jhon74741
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Really_anxious smiler2015
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I'm not even sure if you check this anymore but I found your post encouraging. I'm scared to death about surgery. I've also been on the internet way to much which has me scared! I don't see my GP for 2 weeks and my anxiety is taking over! Did you ever have surgery and if not how do you manage your fistulas? Any advice is appreciated as too am a working mommy and need some relief!!
tasha67783 Really_anxious
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I had an operation 14th December 2015 to have mine removed after suffering with a painful swelling for months and occassional abcess. Operation took 2 months of healing beofre I could drive or sit down for long periods. I had nurses coming to my home for the first weeks to change the bandagaes with was ho0rrible as they come in two's!! ive had every nurse in the West Sussex distract with there head near my hooha!! 6 months later after recovering the thing came back. They want to operate again and leave a seton in which is supposed to be very painful as it cuts through. I live an active l and read that i wont be bale to swim, run, massive clean up everytime you go to the toilet. Its just not practical. So I am on the list to senother surgeon at St Marks Hospital in London who are supposed to be the best. Irts on NHS so all I can say to you is really really research your options beofre going into surgery. You could have a quick recovery or bad one like mine and its all for nothing. ve seen a lot of people self managing. I qam going to do that for as long as possible and am currently researching new minimal procedures such as fibrin glue, VAAFT with electro pulses. veryone is different and every fistula is different. Yours may be minimal surgeory afecting no major muscles. Go get a scan and see a specialist. If you are still concerned get another refereal. I would never havbe that operation again unless it was life threatening to be honest.
maggieJJKT Really_anxious
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matthew97882 smiler2015
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Isn't there some kind of antibiotic they could inject into the fistula?
anon07042 smiler2015
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Hi i would like to ask you for some advice on my situation. I've been under three in three and a half years for a perianal abscess that turned into a fistula and I can't do it again. The depression is too much. I haven't stopped smoking cigarettes or talking to Mary Jane since the first one. It's back to giving me pain and draining to the point where it's getting close to the same pain as when I went under for a fistulotomy. I just need some advice. Please.
matthew_96744 Really_anxious
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I know 100% how you feel. My whole ordeal started in Feb. Had surgery to deal with an abscess, which then lead to a fistula, unfortunately I had another abscess on the opposite side of the abscess. I had surgery again on April 3rd and the pain has been much better then before I had surgery. They performed a fistulolmy, i&d on the abscess, and a nom cutting secton placement on a second fistula to help with drainage. The only pain I experience now is when I have bowl movements. But like you I was terrified of surgery I've never had it before until all this happened. Hopefully this will help ease your worries on surgery if that's the path you choose. Good luck on your recovery.
matthew97882 maggieJJKT
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How are you doing now 4 months later? I just had surgery last week on my fistula, at first I didn't have much pain just some soreness, a few bowel movements later it almost feels like I have another fistula, not sure though. I haven't really been straining, it's just of course painful to have a bowel movement, and this one today sent me over the edge. I'm worried I may need surgery again. It feels kinda bumpy on the anus, don't know if the thats just normal swelling that occurs afterward or if it's the start of another fistula, have you experienced this as well and did it end up healing?
brad94650 matthew97882
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Hi Matthew - I know your feeling. I've had the same fistula operated on twice and a seton inserted. I thought after the last removal that it had come back -but now Im not so sure - lumpy - yes, I was told to expect some scaring as part of teh healng process.
matthew97882 brad94650
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I saw my doctor last Friday, said it looks like it's in the healing process, to keep taking sitz baths and applying nystatin, but the pain still feels like it did with the fistula, don't know if that's normal, and when I look at it I can't tell if it's there or not, I just want to know for 100%, but I know you can't tell me that lol
joshua33483 smiler2015
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sammy30145 Really_anxious
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Good day Really Anxious and all other fistular patients. I feel and understand for each and every one of you. Our partners try to understand our emotions that we go through but it is always as if there is something missing from the complete understanding if you yourself does not go through the problem yourself. I did not know what fistula's were up until I got my abscess on my butt which was soo very painful I could of cried. My hubby and I do not believe in hospitals and doctors...we are herbal and mental healers... currently I am drinking Genseng Tea, Bicarbonate of Soda with a little lemon juice as well as Brewers Yeast... I am praying that something works. Yes keeping the stools soft is very important. When I just started with my fistula I used to clean it with Iodine (my word that burns) and I used a granular plaster. My hubby is so supportive he helps me find remedies. Sometimes things seem to be going good but its always there. I am scared for if it closes that an abscess will appear again as that is what I have read. I also will not go for any operation. It definitely affects once romance life... I have had this since March so its been almost a year. I have been so scared of the "C" word...as my family says it... cancer... I have cried, I have been quiet... but I seem to be more at ease now knowing it is not cancer. I have never seen a doctor ... dont trust them at all... they always slice and dice. I read up that 75 % doctors will not go for chemo should they get the "C" word... so why do they do this to us...hmmmm.... Well back to the fistulas... all the best people, and lets keep faith that someone on this forum will get an answer for those suffering and will share their good news with us as well.... I definitely will... if my remedies help you guys will be the first to know.. Keep chin up guys and girls...someone will get an answer for us.
tasha67783 sammy30145
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Hey Sammy! I understand. I'm living with one now after having surgery. The operation was terrible, the recovery he'll and they missed it so it came back. I remember shaking with absolute fear when they told me it was back, not due to the fistula but the thought of surgery. Well since I resided myself over to living with it and never letting a surgeon carve me up again I'm better than ever.
My advice to you is to go see a doctor, go get a scan. You don't need to except treatment or have surgery but as a precaution to make sure it is just an anal fistula and no other issues. Once confirmed sit yourself in a hot bath every night for a couple weeks with loads of magnesium salt. It will draw the puss out. I squeeze mine (Sorry for details) like a zit maybe once a week now and Dan Sudocream on it at night. I eat plenty of veg to keep stools soft and voila. I'm back at the gym, running, swimming, going out, not crying or getting depressed. Have a cured it? No. Is it still there? Yes. Does it get sore still. Occasionally but I repeat magnesium bath, cotton knickers and Sudocream.
Unless my health is in serious danger I will never go under knife again. Now that I've accepted the little bugger is just there, part of my body, annoying admittedly but it's there and here to say I am SO much better. It's do able Sammy I promise. Xx
sammy30145 tasha67783
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Mine bleeds sometimes just a little bit. It also gets very very itchy sometimes. I can feel a distinct tunnel go toward it..
All the best and still praying for someone to just get a remedy to make it go away... please share if someone does have one....without the need of slicing and dicing.
tasha67783 sammy30145
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Don't forget hot bath with magnesium salts xx
Tan1967 tasha67783
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sammy30145 Tan1967
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The iodine helped me feel cleaner even though it burned so badly but I was afraid I am aggravating it more than helping it cure..?
tasha67783 sammy30145
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No not direct in the bath! Otherwise you'll be like a cat hanging off the ceiling!!
I honestly feel so much better now after just excepting it and making it manageable. I saw the top surgeon in the UK last time as I point blank refused to go under the knife again and he kept telling me worst case scenario if I left it but when I pushed and pushed about if I am putting myself in danger by living with it... he eventually backed down. I hope I'm not misleading you. Some people have one surgery and they are fixed, others have had countless operations and thier lives destroyed so my personal beliefs are surgery is definitely not always the best option. Xx I wish you the best and like you I hold onto the day when there is a guaranteed cure with no surgery! X
Tan1967 sammy30145
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Hi Sammy, Im Tanya, I replied to tasha's message to you. You put the tea tree oil into your bath with your epson salts. I have 2 baths per day. I also combine a few other things such as a strict Vegitarian diet, Manuka honey (85+) in warm water morning & night, Tumeric tablets, garlic tablets, stool softeners, the best thing I use is coconut oil (organic virgin) on the area as many times a day as you want....mine looks & feels like its healing....Ive been doing this for 2 months....
Tan1967 tasha67783
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Hello Tasha.
I agree whole heartedly. I had 4 surgeries in 10 months. Mine started from a Perianal abscess. I ended up having a colonoscopy to see what caused 3 small fistulas, all clear thank goodness. I researched alot & realized my poor lifestyle over 30 years caused this, 2 anal fissures from very hard motiond, bad diet choices. So I refused any more surgeries, I had 2 layed open & they healed brilliant. He missed the last small one, which Im naturally healing now. I had no blood when opening my bowels, my motions are now soft & no pain. Sometimes I may have a little discomfort but thats only if I open my bowels more than 2-3 times a day. I had 2 setons in at separate times. One hurt so much the other pulled on the outer lesion. So I had them removed. Coconut oil along with epson salts & tea tree oil baths have cleared up the outer lesion. In 6 months I'll have a scan to make sure its healed.
tasha67783 Tan1967
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Wow thank you. I will try coconut oil. Is it the sane stuff I buy to cook with? It's 100% organic. How often do you use it? Sudocream I have found amazing when itchy or sor. It clears the infection up within hours but to be honest it's so rare now. I was worried about externally healing it as there no where for the puss to go and abcesses hurt like hell! X
sammy30145 tasha67783
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Tan1967 tasha67783
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Hi Tasha. Yes the same coconut oil in the jar that you can cook with. Use as many times a day as you wish. You can leave it out on the kitchen bench until melted then make like suppositories (some have made from using a straw to suck the coconut oil into then refrigerate until hard & insert. That will help heal inside. May I ask, do you have any bowel disease (Crohns, colitis, diverticulitis)?
sammy30145 Tan1967
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Hi Tanya, thanks will put the tea tree in the bath.... I have been doing sitz baths with the Epson Salts as Tasha's advice... I actually put tumeric powder on the fistula for a while as I read it was good for the health... but that also didnt work so will start drinking it... I have even put toothpaste on for a while but that just made it itch badly... lol...considering a tube of glue next.... I keep eyeing it but I know thats not a good idea... I am just so sick and tired of this thing.
Everything just seems to annoy me lately just thinking we have to live with this ...makes me so miserable!
sammy30145 tasha67783
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Have a good day
Tan1967 sammy30145
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I know exactly how you feel as your emotions are raw. Try orally taking tumeric tablets. Manuka honey twice a day in warm water. Use the good Manuka honey (85 +) be very stict with diet....no meat, meat has bacteria which keeps the fistula alive & won't heal. Garlic tablets. It will take 3-6 months to heal. Lots of fresh vegetables, fruit, salad. Red papaya is a great stool softener...
sammy30145 Tan1967
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All the best to everyone suffering from this condition.
Tan1967 sammy30145
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sammy30145 Tan1967
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I know that is a huge no no for me since I have been reading on this forum... I drastically have to change my diet!!
tasha67783 Tan1967
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Tan1967 sammy30145
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If you go onto you tube or google & research Ayurvedic medicine & Ayurvedic diet for fistulas, that has great information. And lots of water, no junk food, fatty foods, processed or anything with preservatives.
tasha67783 Tan1967
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Tan1967 tasha67783
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Tan1967 tasha67783
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Tan1967 sammy30145
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sammy30145 Tan1967
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Tan1967 sammy30145
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I tried the indian herbs but it caused colon clean out which I definitely don't need so I researched healing myself.
sammy30145 Tan1967
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Thanks so much ... I did google Ayurvedic medicine... I told my hubby last night we both are going to be changing our diet.... we in our late 40's and it is time to start looking after our bodies. thank you all for you advise... and our chats it has made me feel so much better about the situation I am in....
I always joked with my children to say if I drink water I am going to rust. I am not a fan of water.... only in coffee. But if my body talks I must do.
Be blessed all
Tan1967 sammy30145
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Haha rust. Yes I use to think that. Im so glad that our chat has made you feel better. The key is keeping bowel movements soft. Red papaya is good. 85+ manuka honey. Tumeric. Coconut oil on the area. Tea tree & epson salt baths twice daily. Lots of water. Vegitarian diet. And patience. Healing takes a while....
sammy30145 Tan1967
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Tanya and Tasha just want to say you both have inspired me so much.
Did you also know that if you drink the Tumeric tablets you need to have black peppercorns as well for the tumeric to be absorbed. I read some people just take 2 or 3 peppercorns and drink it hole for the absorption of the tumeric in your system.... interesting I did not know this...just though I would share it with you.
Since yesterday I am on my own healthy eating diet. Advice from what to eat and what not to eat from Ayurvedic people who emailed me.
So no coffee, no red meat. I have a bowl of rasins infront of me as we speak chomping them. Drinking my Gensing Tea. Got myself some all sorted nuts yesterday. Lets see how this works out for us.
On the one site they call it a rubbish disease.... oh my how right they are. But I dont like referring it as a disease...prefer the term "disorder"
Be blessed everyone. Keep chins up... we going to win this
tasha67783 sammy30145
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Hey Sammy,
I think rubbish disorder is quite a good description. Mines worse if I eat rubbish. I only eat red meat once a week and an trying very hard to eat fish and veg. I get married in a couple if months so I want to be the healthiest I've ever bern. I've got am interactive thyroid as well so that played havoc on weight, digestion, lethargy but I'm medicated now so pushing through it. I gave up caffeine and only drink herbal teas like ginger and turmeric.
I rarely have a flare up now which is amazing. Doctors and surgeons can do amazing things but then sometimes like dentists, they can pull teeth which don't need to be. My partner was amazing and I did struggle with the news it was back and got really depressed. I think a lot of fistula issues are mental as the effect it has on our confidence and body can take it's toll. One day I shall be rid 8f it but for now o shall just live with it and not let it beat me! Chatting on here has given me strength too as I know I'm not alone and my responses and feelings are normal. I'm not a freak woohoo.
Good luck for your future xx
Tan1967 tasha67783
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tulip78 Tan1967
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Hi i had a perianal abcess in 2015 october. Had antibiotics from GP that didn't work then had surgery to drain it. had it packed every other day at the hospital then it healed on the outside but not inside so had to have it drained again, then i had to have it packed everyday. had to be off work, it took 5 weeks to heal as the wound was left open to heal. It was a cross shaped incision and left a horrible scar. now a tiny hole has appeared in the centre of the wound and very occasionally drains a little, saw my GP about it but he asked if i had drainsage i told him a little but he said to leave it?!
I'm from the uk and it's good to hear that other people have this condition. I feel fed up and soooo worried about surgery. I have a healthy bmi and do a lot of walking and mountain climbing, a good diet so don't know what caused it.
tasha67783 tulip78
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Sometimes they miss a tiny bit and it comes back. It's in most people recurring at some point and unfortunately like you, mine came back a few months after surgery. My recovery was horrific and like you again, horrendous scarring. If you read some of the messages I sent to Sammy you will see I'm living with mine now as refuse surgery. I'm back running, swimming, it's not effecting me anymore because I won't let it. Mines been back for well over a year and I'm managing it comfortably x
I'm also in the UK
Tan1967 tasha67783
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Tan1967 sammy30145
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Hello Sammy. I understand totally about everything annoying.....I sat on my bed today & cried. My fistula has been feeling tender over the past few days. Usually it will settle & feel more normal. But when its like this I feel like I want to crawl up in bed & sleep. Im 50 & just ask for my old normal life back...
Tan1967 tasha67783
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Hi Tasha, I have a question. How did you get your mind to the point where you accepted your problem & began living with it? Mine is only small & when its a little sore & aggitated it brings my emotions down.
Tan1967 tulip78
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Hi tulip. Im so sorry I missed your message & just read it. The only time I will ever have surgery is if another abscess formed, touch wood it never does. Have you been checked for a fistula? A personal question, have you had hard bowel motions? Or any type of bleeding from the anus? Mine came from years of poor eating, hard bowel motions, 2 anal fissures, bleeding from the anus. It takes 1 small tear in your anus to leave you open to infection. Then an abscess can form & it runs from there. Im in Australia.
tasha67783 Tan1967
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That I really understand. Well, I guess for me it was the thought of going under surgery again that made me begin to research forums where people had chosen to treat naturally. My surgery recovery was horrific, 3 months before I could drive, sleep, sex and even then my scarring would tear. I use Sudocream which is amazing when I have a flare up, i dimt know if you are trying 100% natural but this has been a god send but that's just physical. Mentally..... well that's the biggest battle.
When I chose to stop panicking about the symptoms and thinking the worst I learnt to deal with it better. If it itches randomly, I get the mirror and check if it looks pusey, if it does I give it a squeeze and stick some Sudocream on it at night. It's not weird anymore it's normal. If it's sore and I feel it's deeper I have magnesium salt bath for an hour and then Sudocream and bed. None of this is in front of my partner and hes totally oblivious. Mentally that helped me because hes not feeling awkward and (take this onboard) It's nothing more than an open pore. You ever seen one of those annoying blackheads that need a good squeeze after a month?
Basically I became so determined that I was not going to have surgery that I thought F**K you. I will not let a reacuring zit effect my life anymore. I lost 3 years. Anxiety meds, panic attacks, severe depression etc
I spent so much time thinking how disgusting it was and how dirty I felt it. My sex life was totally ruined because all I kept thinking about was this huge volcano of disgustingness. If you had a zit that kept reappearing you would deal with it. Think of it that way!! Yes ok some cases are worse than others.
But if if you are in actual pain or you don't have an external opening then you should seek medical advice. It doesn't need to involve medication but maybe a cut to relieve pressure.
Believe me Tan this started 3-4 years ago for me and I've gone thorough everything but for the last 18 months and just treating it as an annoying zit... I don't let it effect me anymore x
Tan1967 tasha67783
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Hi Tasha. Thanks for those words. At times we need another perspective to think about. For me, its small. The last surgery I had was in Oct last year. They did a colonoscopy to check for any bowel diseases as to why I had a 3rd fistula (the other 2 were small & joined do they lay them open) they healed brilliant & never returned but he missed the 3rd one. This one is slightly in the sphincter so they put a seton in to my horror as I haf one before & it was painful. Anyway this last seton I made them remove in the ED....after a 5 hr wait they finally took it out. What an emotional relief. My fistula has an external opening so it drains. I am taking the natural healing approach. Epson salt baths daily (once or twice), I have been using tea tree oil in as well but I feel that could be irritating the outer skin of my bottom so I'm stopping that. Coconut oil is fantastic. Vegitarian diet for the rest of my life. I drink as much water as I can. No junk. No tea or coffee. I don't drink or smoke. Ive lost 14kg. This started with a perianal abscess in Jan 2017. So 1 year for me. Only very small superficial perianal abscess but now this. As for my fiance, he knows everything as to how my bottom is. He takes photos for me so I can see how its going. Yep you heard me correct haha. He is my ass photographer....he will take one anytime I need so about once or twice a week. I tell him everything & the most loving supportive person in my life. I will most definitely start to see this differently & much less panic. I am going to head for a cure & not just living with it.
tulip78 Tan1967
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I have just received your message, I have not had access to a computer for a while sorry. I remember that about 10 days before my abscess, I was badly constipated (I never usually have constipation) and hadn't been for about four days and when I did go, I had an awfully hard motion. It hurt and bled bright red blood after, before that I had a haemarroid (pile) . I bet that's what caused it!! For ages I was wondering what did it!! I'm not surprised because it hurt so much ( sorry for the detail). I eat well,low fat and sugar, eat lots of fruit and veg and I run a few times a week. I don't smoke or drink but sit for 8 hours a day at work !!
Tan1967 tulip78
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Hello. That sounds like what may of caused it. These things are quite common these days. Constipation is one of the worst things for these. Keep your motions soft (red papaya is good for this) research natural remedies, find one which suits you...I don't smoke or drink either but years of poor lifestyle lead me to this....feel free to message me anytime you need...
Tan1967 tasha67783
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sammy30145
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tulip78 sammy30145
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i agree it's rubbish! i don't want surgery
jeffwever sammy30145
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sammy30145 jeffwever
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Hi there guys... mine has been for a year now.. It is very difficult to talk to family especially my children... My hubby is so understanding he has walked this path by my side all the way. I am drinking tissue salts daily, warm milk (lactose free) with ghee and tumeric powder. I have a free-from shake with soya milk every morning. I put on tea tree oil and argon oil daily, bath in epson salts....and became a vegetarian .... no fish, no chicken and no read meat.... its been just over a month now.... this month its been exactly a year since I developed my abscess. I am fortunate as I work from home so when it is paining then I can go lie on my tummy to get the relief from sitting.... the Ghee and Milk really helps... I thought by taking my shake alone I will cut out the ghee and milk...but do not do this.... it does not take it away but I promise you somehow it just helps it from getting inflamed and so very painful. When mine does bleed or get yucky then I cut a block of granuflex extra thin plaster...stick it directly over the hole and then it does not mess all over...leave it on for the day just before you bath the granuflex plaster will come off easily from the wound.
At this moment I am in a "happy" place... got mine so far under control...not gone though but at least I am not talking of doing anything "weird" to myself anymore.
All the best my fellow sufferers of this garbage disease.
susan03074 tulip78
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barry33116 Tan1967
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Dear Tan1967:
Hi , I am Barry from Hong Kong. Sorry for my poor English. Although the message you left was five years ago, I really needed your advise. I got perianal abscess and had a operation done by the surgon a year before. Unforunately, the operation failed and the surgical wound do not heal well and left a anal fistula to me. In a recently, it became swollen and made me uncomfortable and painful. But I don't want to had operation done again. I read your message in this forum about the use of tumeric tablets, and Honey and healthy diet to taclkle the problem . May I ask will this method could heal the fisutla. Your reply will be highly appreciation.
barry33116