C. Diff Say What?

While I am on the hunt for/creating my own surgical illustrations, let’s take a break from fistulas to discuss a nasty little bacteria called Clostridium Difficile (C. diff). This is a bacteria that lives in all of our intestines, and is normally kept at bay by good bacteria.

Why would I bring up this ugly little bacteria here on Fistula Survival Guide? Because many of you suffering with colorectal fistulas will undergo surgery, and more often than not after surgery you will be put on one or two antibiotics. Unfortunately, strong antibiotics (such as Cipro, which is commonly prescribed after surgery to prevent infection) can kill off the good bacteria in our intestines, which can allow c. diff to flourish and develop into c. diff colitis (I may refer to it as simply c. diff throughout this article).

This happened to me after my second surgery. I was having horrible diarrhea (more so than is usual for me even with IBS), stomach cramps, and nausea, but when my doctor at the time didn’t think much of it, I chalked it up to being sensitive to the antibiotics. I went ahead and charged forward with surgery number three, my very first advancement flap surgery. Weeks after the surgery, when I should have been healing and feeling better, I was still in huge amounts of pain, still feeling horribly sick to my stomach, and worst of all the surgery was not healing.

As fate would have it, my doctor left and I was sent to a new colorectal surgeon. Concerned about the frequency of my diarrhea, nausea, and lack of healing, my new doctor ordered a stool sample. Lo and behold, I was plagued with the dreaded c. diff colitis. In most cases, given a regiment of a certain antibiotics (Flagyl is the first one I was given), it will go away. I was in the unfortunate 20% that required almost 6 months of treatments, different medicines, and even participated in a study for a new c. diff medicine (turns out I was in the group given Vancomycin, which was not the new medicine). Eventually, the vancomycin cured me, but it was a long and grueling process.

After you have had c. diff colitis, you will need to be forever cautious when you have to take antibiotics, and alert your doctor to the fact that you had c. diff. Seriously–for the rest of your life. Be careful. I am not trying to scare you, but this is a disease that can and has killed people. Those are extreme cases, but it is not something to be taken lightly.

The main reason I bring this ickiness up is that there are certain things you can do to reduce your chances of getting c. diff. After surgery, while you are on antibiotics, here are a few suggestions I have (as usual, PLEASE CONSULT YOUR DOCTOR, this is just advice from my own experience, most of it given to me by my doctors):

*TAKE YOUR FLAGYL. Seriously, if you are taking Cipro or any other really strong antibiotic, do not skip your doses of Flagyl. This will help keep the c.diff at bay.

*I highly recommend taking a good probiotic (my doctor told me about florastor, which is a yeast-based probiotic, so it isn’t counteracted by the antibiotic). This beneficial bacteria can help combat c.diff

*Turmeric! Take lots of turmeric! It cannot hurt you, and is naturally anti-bacterial, anti-inflammatory, and helps to improve your intestinal flora. You can get it as a capsule, or just loose powder, which can be mixed into your juice, water, or food (the powder is cheaper and found in most spice sections at grocery stores).

*Pay attention to your body. If you feel like something is wrong, it is worth it to talk about it with your doctor. If you have been on antibiotics for 30 days or longer and start experiencing consistent watery diarrhea, fever, nausea, weight loss, loss of appetite, ASK FOR A STOOL SAMPLE TO BE TAKEN. My first doctor did not order one, despite my complaints of almost all of these symptoms. You can ask for/insist on a stool sample.

For more information, I recommend this PDF:

http://effectivehealthcare.ahrq.gov/ehc/products/115/891/cdiff_cons_fin_to_post.pdf

and this awesomely helpful website:

http://www.cdiffsupport.com/aboutcdiff.html#What_is_Clostridium_Difficile_-_in_easy

If you have a serious case, and are not recovering, I highly recommend going to an infectious disease specialist. Ultimately that is what I ended up having to do, and that is where I was given the right treatment.

To reiterate, I am not trying to scare you. I just wish I had been aware that this even existed when I was going through the Fistula of Doom. I hope you have found this helpful! Take good care of yourselves, and always keep hope. I healed. It took a long time, but I did make a full recovery. Remember that you are not alone.

In fistula solidarity,
Leah R. Chatterjee

The Fistula Blues

Having a perianal/anal fistula is an extremely painful experience, both physically and emotionally, and it can often take a long time to fix it. I have been living with a perianal fistula for over two and a half years, and though the last two surgeries I had have successfully closed the fistula, the outside “exit hole” (for lack of a better term) is still in the final healing stages. One of the worst parts of colorectal health issues in general is that nobody wants to talk about them. Even for those of us with the strongest stomachs, it is rather gross to describe to your friends, and embarrassing to explain to strangers or acquaintances. Let’s face it, the rectum is a sensitive topic.20140209-074549.jpg

While there are endless ass jokes to be made, and I have found humor helpful in both explaining my situation and in coping with it in general, there is a really dark and messed up reality of living with a debilitating health problem–especially when that health problem is in an area that is hard to talk about openly. I remember slowly slipping into a fairly severe state of depression about three months into the whole fiasco. I was in pain most of the time, I was leaking fecal matter constantly (spent the better part of the year in adult diapers), I felt dirty and disgusting all of the time, and I felt isolated because nobody fully understood what I was going through. I found myself spending most of my days in bed watching Netflix and escaping into my books. Ninety percent of the social plans I made I would have to cancel due to pain or poo leakage, I ended up having to quit my job because it was too physically demanding when I could barely get out of bed most days, and I honestly cannot remember a darker time in my life.

sadstatuefistula

I think it’s important to understand how much pain can change your personality, mood, and general health. I became a different person after living with pain for over a month. The pain killers made me feel like crap, and added to my depression, and the pain itself began to wear on me and make me irritable, and even verbally abusive at times towards loved ones. As the months went by with little to no success from treatments and surgeries, I began to fall into the grips of complete fear and hopelessness. Would I spend the rest of my life leaking poo into my vagina? Would I have to live with constant pain for the rest of my life? What if they NEVER managed to close the fistula? Could I envision a future like that? My reality at that time (about a year ago) was that I might have to. At that point, even the doctors could not tell me with any certainty that they could fix my fistula. It was even mentioned to me by my first doctor that there was a chance I might have to just live with a semi-permanent seton band hanging out of my ass. All of this was terrifying to me, and I realized that I would have to find ways to live with the pain and grossness and discomfort, even if just temporarily. I couldn’t sustain the level of depression I was at, and I didn’t want to be this person I barely recognized.
funnypillladyOne of the first things I did was try to ween myself off of my pain killers. I am quite sensitive to narcotics, and pills in general, and I knew a huge part of my mood was being effected negatively by the medications. I am by no means suggesting you should stop taking your medications without talking to your doctor. In my case, my doctor thought it would be good for me to try to take as little as I could, so I did. I was pointed in the direction of “gating” by a close friend who lives with MS. I read about it, and began practicing it. I’m not going to go into a full explanation of the gate control theory of pain and the neuroscience behind it, but here is a link to the best/simplest explanation I have found for it:

http://gracefulagony.wordpress.com/2010/03/04/gate-control-theory-of-pain/

20140209-082042.jpgGating basically helps distract the focus of the pain signals by redirecting them with either physical, mental, emotional or active distraction methods (for example, applying heat or cold, listening to loud music, going for a walk or mild exercise). Seriously, check out that link and read up a little more about it.

Another thing I started doing, with the help of my therapist, was to start talking about what I was going through with my friends.20140209-082021.jpg I began to open up about my fistula frustrations on facebook even. I decided to stop giving in to feelings of shame and embarrassment, and to counter any negative feelings I had about myself with constant reality checks (some of this I learned in therapy as Cognitive Behavioral Therapy, which is basically a long process of retraining your brain to stop negative thought patterns). I did not do anything wrong, I am not disgusting–I am living with something that creates a lot of ickiness, but it is not my fault. This might sound sort of stupid when you first start doing it, but after a while you start to do it automatically, and suddenly you realize you believe it. It wasn’t easy, especially since I am prone to depression, cynicism, and general pessimism.

flowerpowerAnother huge help has been herbal supplements, which I realize are not recognized by Western medicine. I can tell you that fish oil and flower essences helped me a lot. Flower essences helped my mood and anxiety hugely, and are almost 100% harmless. Here is a handy list of common flower essences and their uses from Bach flower essences (I am posting this link because they are the easiest to get ahold of, and seem to be a legit company):
http://www.bachflower.com/original-bach-flower-remedies/

I also noticed that Omega 3 (I specifically used Omega3 Joy brand, but there are plenty of omega3great options out there) helped elevate my spirits some, too. I also found turmeric to be extremely helpful–it is great for anyone suffering from IBS or IBD as it is a natural antiseptic and helps to settle your stomach and kill off harmful bacteria. Turmeric is also quite good for circulation and lessening inflammation, turmericwhich can help some with the pain. I’ll also add that while you can get turmeric in capsule form, it is much cheaper to buy the loose powder in the spice section (or the international section depending on the store). You can mix it into your food or drinks, and it has very little flavor. Please, of course, discuss any supplements you might want to try with your doctor before taking them. As far as I know, the supplements I’ve recommended are harmless, but you always want to check with a medical professional first, especially if you are taking other medications or have sensitivities.

I urge you, more than anything, to speak out and reach out. E-mail me at fistulasurvival@gmail.com if you have nobody else to talk to about this stuff. It might take a me a bit of time, but I promise I will get back to you. Talk to your friends. If they are good ones, and I hope they are, they will listen and be surprisingly supportive. You may even find out that they or someone they know have been through something similar. I am constantly blown away by the people who have told me their stories, or offered love and support. It is ridiculous that anyone suffering from ANY health problem should feel ashamed or afraid to talk about it openly. The only way to combat the taboo surrounding colorectal problems is to be loud. Sure, you may encounter some negative reactions, but I have to say that I have had overwhelmingly positive responses to my sharing. I have learned more about my own strength and character by opening myself up to others, and I hope that by sharing my experience with you I can encourage you to do the same. This world can be a scary, unjust, and confusing place, but there is a lot of love to be found out there. I’m not trying to be cheesy, nor am I minimizing the suffering that you may be going through, but I honestly believe that if I can survive this damn fistula, so can you. Most importantly, I promise you, you are not alone.

Love and light amidst the tunnel of doom,
Leah R. Chatterjee