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
alabaster10320 moosecraftsman
Posted
I find a lot of these replies are lengthy and seem full of anxiety. I too have been in this place and a year ago I was frantically scouting the internet to find any sign of hope with a fistula. Much to my frustration and despair, it didn’t seem like there were any.
A year later and I still am living with my fistula. At first it was extremely overwhelming, but I’ve found was to cope and keep living. I don’t have any other choice but to, right? It’s been a journey but I’d like to share some things that have helped me immensely and spread a little positivity in an other wise gloomy thread.
First— radical acceptance. This was the key on my path to regaining my normal life back. In the beginning, I was shocked, worried, and terrified that this was going to be long term. And you know what, it has. I stayed up all night worrying, hid myself away at work, wouldn’t engage in things I enjoyed anymore because of my fear of using the restroom outside of my home. Just wallowing I’m self-pitty. This only made things worse. I had to accept that these were the cards I was dealt to be able to get in a recovery mindset.
Second— Being prepared. I never go anywhere with out a backpack with a few supplies. First and foremost are irrigation bottles. The sitz baths you can buy are very large and clunky. This this is light and concealable. It acts like a bidet to clean the area after a bowel movement. I also have a supply of gauze pads that I use to pack the area when I go about my day. It keeps puss from leaking everywhere. I really like the mirasorb pads that Johnson & Johnson make. Buy on Amazon for discount. Baby wipes. I use the natural Huggies. (I tend not to need these much these days.) I always give myself time to have a vowel movement and clean if I’m out of the house. I don’t rush it. Usually takes no longer than 10 minutes from start to finish. I prefer private bathrooms obviously, but not necessary. I keep the little kits in my car and office Incase I forget to bring my backpack anywhere. I also can now pretty much set my watch to my bowel movements. Always in the morning after breakfast and every now and again in the mid afternoon. I eat each meal around the same time everyday. So even if I have a late lunch or dinner, it’s still on schedule. This has been very helpful in planning.
Third— Support. I know there’s a perceived stigma around stuff like this, but seriously, who cares? Talk about it! I’m fortunate to be in the health care field sonweird stuff isn’t really taboo. I was surprised that all of my colleagues were not familiar with a fistula. They have all been super supportive especially during my times of surgery. Just remember to only share with those you feel you can trust. SEEK HELP! I became depressed once the idea of something long term sank in. Getting a therapist was a such a good decision for me to help me process this and other things. There is real science that supports the mind-body connection and I will get to that in a bit.
Self-Care— The experience has been taking emotionally. Connecting with things I enjoy helped take my mind of things and got me socializing again. Also not giving myself such a hard time when I just didn’t feel up for leaving my house on weekends. It’s okay. It happened and it may again but I needed to give myself permission to let my body heal. Therapy was a good start but there was still a lot of feelings I just couldn’t shake. I got a psychiatrist and have been small amounts of antidepressants for the past 4 months. That was a godsend. I needed them to help get myself centered again. My personality is still the same, but it gives me more breathing space so I can work on myself and not become overwhelmed with sadness and anxiety. Of course medications for this are deeply personal decisions. For me I was willing to roll them dice but that does not mean everyone has to. If you do decide to explore this route I recommend either a psychiatrist or a psychiatric nurse practitioner. They take a more holistic approach and do a whole assessment and determine what medications may fit you best where as a general practitioner usually will just persribe you something without much thought. My nurse practitioner did a full assessment and was able to recommend some medications that would not effect my bowel movements because she was aware of my fistula.
Last but certainly not the least— Mind-Body connection. Look, I’m not saying that having a positive outlook is going to cure this, but I am saying that having a negative outlook on my situation will only make things worse. I would find myself reading through forums like these for hours and filling my head full of fear and anxiety while desperately trying to clutch into any shred of hope. I’ve never been much of a complainer, it’s just my personality. But when this first happened, I sat back, what he’d the world go by, blame the universe for my misfortunes, and just complained about life. And you know what? My thoughts quickly became my reality. I had to shift my thought patterns in order to not drag myself through the mud. Daily meditation and positive affirmations have helped tremendously with this part. Of course there were times of immense physical pain. In those times I just granted my body permission to do its thing and allowed myself to rest. Just gotta roll with the punches sometimes.
After several operations I still have a fistula, but, it’s completely manageable for me now. I have a small seton in still, but there is minimal to no pain. I fact— there has hardly been any puss lately and I have been able to not wear gauze for several days now. Quite honestly, y’all— if I’m able to keep it like this, I’m thinking about not having another operation at all. The thought of another invasive operation in my ass is not appealing at all. I’m able to do most of the same things I was before all of this. Light bike riding, exercising and weightlifting, etc. The next thing I want to figure out is dating. The dating part isn’t the concern so much as when the time come for me to spend the night for the first time and tell her I need to use her bathtub in the morning. I’ll report back on that once I got it figured out
Take care of yourselves, y’all!
aubrey33657 alabaster10320
Posted
I started taking 1 Tbs apple cider vinegar with the mother in ice water twice a day about a year ago and have only had 1 minor leak since then. I was having 1 flare up and leak per month which lasted 5-7 days per episode until I started the vinegar. Sounds crazy but it has worked well for, me I don’t even keep supplies for leaks at this point👏👏
kamran48167 moosecraftsman
Posted
Surgery is unnecessary!
Hopefully my story would help some of you.
Last September (2017) I noticed an abscess. I thought it'd go away but it didn't. I was gentle with it. I did not touch it until the puss started to discharge on its own. It was then that I realized it was serious and needed to see a doctor. I was diagnosed with fistula and a specialist recommended surgery but h was not my doctor. My doctor for life is an alternative medicine (integrative medicine) and at the time was in another state (USA). So I arranged a phone session with him. He did not recommend surgery. He told me that he has had fistula patients in the past who recovered over time without surgery. He said it will heal over time but I have to make sure it will not become infectious. For that he prescribed this: Apply a mixture of DMSO and Iodine. Mix 7 drops of DMSO and 3 drops of Iodine. Use cotton swabs (tips) to apply it to the fistula area once or twice a day. I have been doing it since March of 2018. About 70% recovery . It’s a very slow process nevertheless improving albeit very slowly. My life is back to normal. I workout, go hiking, go to work, etc. Yes it’s there and little colorless secretion about every other day and sometimes more than a little but I have noticed the gradual improvement over time. Be patient. I am glad I did not go for surgery. I can live with this for the rest of my life if I have to although I expect a full recovery. I have to acknowledge that my case was a rather mild one. The only secretions I have ever noticed were puss, blood, and the colorless serum in small amounts.
What I think caused it? To begin with I had GI tract issues and food sensativity in the past caused by Accutane. Then dehydration last summer. I believe dehydration was the trigger. Drink lots of water. Again drink lots of water and stay hydrated. Juices, tea or coffee are not substitutes. Staying hydrated is very important in my opinion. I drink at least 6 pints of water. Water helps ease the bowel movement tremendously. Eat greens every day to ease bowel movement. Easy bowel movement is also very important.
Kamran
arpit28139 moosecraftsman
Posted
Hi everyone, I want to share what has helped me tremendously over the past two and a half years. I was diagnosed with an anal fistula three years ago. Before doing surgery, my doctor suggested to try managing it by keeping the area clean and see how things go. After trying many things, I discovered two things that effectively removed all symptoms
Bidets clean the area much more effectively than toilet paper and antiseptic soap remove the bacteria. If your fistula is not too bad or even if it is, please give these a try.
In fact, when I go on a vacation and don't have access to these two (especially the bidet), my symptoms of irritation and discharge come back and I then want to go back home as soon as possible.