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
danny56909 moosecraftsman
Posted
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.
eddi18 danny56909
Posted
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?
jeffwever eddi18
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!
Whartie2202 jeffwever
Posted
Hi, can I ask why you recommend the flap rather than a plug I'm in the process of deciding wether to loose my seton & go for a plug. Thanks
jeffwever Whartie2202
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Whartie2202 jeffwever
Posted
Ok thanks I'll read up it's a collagen plug my consultants talking about.
anon07042 jeffwever
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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
jeffwever anon07042
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.
maggieJJKT jeffwever
Posted
anon07042
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
anon07042 jeffwever
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
jeffwever maggieJJKT
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.
Whartie2202 jeffwever
Posted
Hi there's a couple on Facebook which one has the diet please?
AnalAbscess jeffwever
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
AnalAbscess jeffwever
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jeffwever Whartie2202
Posted
jeffwever AnalAbscess
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.
AnalAbscess jeffwever
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.
Whartie2202 AnalAbscess
Posted
Hi it's the scd one I was following still can't find the correct one
AnalAbscess Whartie2202
Posted
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
Whartie2202 AnalAbscess
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Tan1967 jeffwever
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?
AnalAbscess Tan1967
Posted
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.
Tan1967 AnalAbscess
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...