Mary’s Story

Hello my name is Mary. I live in colorful Colorado, I now consider myself a survivor of not only cancer but the dreaded fistula. Which is worse?  Both are equal in their ‘suck’ factor but I’d have to say having a fistula and all that it involves is not for the faint of heart.  At least with the diagnosis of Cancer you can ask for help and sympathy without going into details. A fistula not so much…that’s why I felt the need to share my story. There aren’t enough support mechanisms out there and getting the news that you have a fistula is scary! What he hell is this thing and how can you fix it? I am not a doctor and know that every one is different so here is my story and I hope that you get something useful from it.
It’s early 2017 as I write this and I am now 6 months post my Advancement Flap surgery. I spent July 4th in bed after having surgery a few days prior it is (knock on wood) my final experience with fistulas. I say ‘I hope’ because my research shows that an advancement flap can still fail up to one year after the surgery. Crazy, right? Hey, I didn’t make that up I’m just reporting the facts.
My problems started with my constipation. I have had a problem with it ever since I’ve had thyroid problems which is directly connected from my radiation therapy to fight that nasty cancer. If I don’t take my medicine do my thyroid, I get backed up. Ah the circle of life….anyway, constipation led to straining…and finally after of years of this …I believe it contributed to the weakening of my rectal ‘walls’ (not sure that’s a thing) and gave me what was finally diagnosed as a fistula.
The diagnosis wasn’t immediate however because I ignored it for a long time…maybe 6 months? I noticed a bump near my anus and I watched it for a while. I am pretty sensitive to the whole ‘is it cancer?’ and watched it…’ is it getting bigger?’ …and it didn’t , in fact it got hard or bigger when I pooped and then went down in size after a day…so I knew it wasn’t cancer but I had no idea what was happening!
I finally asked my doctor to ‘take a look since she was down there anyway’ as she was doing a pap…she drained it he next day thinking it was an abscess. It returned and I went in to show her a month later. She immediately sent me to a proctologist who diagnosed me with a fistula. I needed two separate surgeries because of the position of the fistula, it was so close to my vaginal wall and my having had three children made the wall between the Ana’s and vagina very thin and also, I had already started having occasional ‘leaks’ (ah, did I mention I’m nearing 50, don’t trust a fart!)…this is all important to know and ask your doctor about…in your decision as to which surgery to have. It all depends on you and your body.
My doctor was great. He let me ask as many questions as I needed to feel comfortable and even gave me an appointment prior to the day of the second big one to quiz him. I brought in my IPad and asked him all my questions. You have the right to do this, it’s your body, ask as many questions as you need to feel comfortable.
So my first surgery was the seton placement which stayed in 6 weeks. Just enough to drain the nasties. My surgeon gave me the option to keep it in as long as I wanted before having the 2nd big surgery. Some people have things “to do” it’s the summer and “maybe you want to enjoy it” , umm, no not with a wire in my ass! For me the seton, was painful so here are some tips gauze and calmoseptine ointment are beautiful. You can take baths and they are lovely. Nursing pillows, called boppy, can be sat on and they work to relieve the pain of sitting.
My research had also shown me that the longer a seton stays in the more damage it can do to your anus…it’s double edged sword really. It’s there to help drain your fistula but as it’s in there sliding around it’s breaking your muscle.
6 weeks, after my seton placement it started feeling better and I could walk without too much pain. I had mastered the boppy and the gauze/ointment placement but I wasn’t done with the surgeries and couldn’t do the things that made life fun. So onward I went…I had the Advancement Flap on the 1st of July, knowing that while the holiday was going to suck I was at least nearing the end. I hoped. Goggle is a great thing and researching is great but I knew the possibility of failure was great so I read about things I could do to help my body.
I took two full weeks off at work and asked for a standing work station to be installed. I have the ability to work from home and told my employer that after the two weeks I’d work from home until I was able to come in…if you have the ability to do these things, I highly suggest it.
I’ve heard of others being able to bounce back within days. These people were probably not slightly over weight 48 year olds…it took me a full week to walk to the kitchen. A month to walk down the block…every recovery time is different so have faith, you can do it!
I had read that minimal activity allows the body to rest. So I took it to the extreme…I stayed in bed the first two weeks. I went to the bathroom and showered (no baths) after every bathroom adventure but then went straight to my prone posture. I watched lots of TV…took my pain medication religiously, your body can’t heal if it’s in pain! Don’t be a hero, take your pain medication.
I also didn’t eat solids for three weeks, yep that’s right 3 weeks. I had smoothies (no seeded berries) and ensure. I had also read that bone broth is good for you, so I had previously made chicken and meat bone broth. Which I had everyday for two weeks…it was pretty good, actually and to be honest, I was fine not having solid foods….so deathly afraid of a painful bowel movement was I, that it was fine. Plus, the pain meds kept me knocked out. Drink lots and lots of water! Pain meds and constipation go hand in hand, so beware.
At my 3 week post surgery appointment my Dr. told me I was good and he’d see me in 3 years for a colonoscopy, oh joy…but no it really is a joy because he said I was ‘good’ ! It was like he was a mind reader though because he knew I hadn’t started on solids yet…I must not have been the only one to skip the food!
So I slowly reintroduced solids per doctors orders. again Google is my friend. Bananas, brown rice, avocados, eggs, salmon are all are easy on the digestive track…ease into it slowly. I started, again per the doctor, to drink insoluble fiber everyday…build up slowly  until you have nice formed poop. Drinking plenty of water, eating foods with fiber and fiber drinks are important to healthy waste removal system…add in a good probiotic (ask your pharmacist) and your poops will be magical. No seriously, I sing a song every time I have a poop. Never will I take for granted a healthy, unpainful poop again and when I start getting constipated again I reach for the magnesium…found in the health store. 1-2 tablespoons in a glass of water…will make everything better.
I am now back to my yoga practice something that I promised myself that I’d get back to ‘if only I could recover’ as I laid in bed for those 2 weeks. I can’t wait to get hiking this coming summer. Maybe I’ll see you on the trail.
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One thought on “Mary’s Story

  1. Hi Mary, I just want to say 1st off I am so happy your advancement flap surgery worked. I will be going in this month for my 1st attempt. Thanks for the tips on liquid diet I will be trying that. Bowels movements are now my scariest fear post surgery. I am now 28 and was diagnosed with fistula in 2015. 7 surgeries later here I am. Any advice you can pass on I appreciate!

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