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 Pain

I think one of the most important issues to address concerning anal/perianal fistulas is the the pain. I have learned that the rectum is one of the worst places to have pain, and it is a tricky type of pain to treat. Over the past 2.5 years I have been given every type of pain killer you can imagine. Even now, after a successful surgery, I am still healing and still in a significant amount of pain all of the time. 

Chronic pain sucks. It can change you. If you have been diagnosed with an anal fistula, and you are suffering from serious to mild pain, you need to address this with your doctor. Do not be shy about it, do not try to put on a brave face, do not “suck it up.” Pain is not good for healing, and it’s not good for your emotional or mental health either. If you are like me, pain medications can be tricky. Most narcotics make me nauseous and depressed, but I ended up having to take Ultracet (which is just Tramadol with Tylenol). If your pain meds make you sick, ask your doctor if you can try something else, and ask for anti-nausea medication if necessary. 

I cannot recommend ice packs highly enough. I keep three gel ice packs in my freezer at all times. Wrap it in a towel or dish cloth and lie down on it, or wedge it in between your legs depending on where your fistula is located. Leave it on there for about 15 minutes, and take breaks. It helps so much to relieve the ache, especially right after surgery.

As for post-surgery pain, STAY ON TOP OF YOUR PAIN MEDS!!!! This is so important. You need to rest, sleep, and heal. You can’t do that if you are in excruciating pain. I hate pain killers, so trust me, I know. You might be tempted to skip a dose and tough it out. Don’t. I promise you, you will regret it in a few hours. The thing with pain is that if you let it get worse it takes longer to manage it. If you stay on top of your meds, take them every 4-6 hours as directed, you can keep your pain pretty mild. You won’t need to take so many after the first few days, but don’t try to be tough, don’t try to be brave. Just take the dang pills. If they make you severely nauseous, ask for a prescription for Zofran or some other anti-nausea meds. Other things that help with nausea are ginger, cinnamon, peppermint oil. Take your pain meds with food! This is a big deal! Eat first, then take a pill, in that order.

The hard part is the chronic pain that lingers throughout the ordeal. You might experience weeks where you feel fine, and can move around great. You will definitely experience days where it’s hard to get up and down the stairs, or get out of bed at all. This can get very frustrating and depressing. I highly recommend that you read up on gating methods. A friend of mine who has MS pointed me in this direction, and it has saved me so much grief. This method basically teaches you to distract yourself in various ways from the pain (listening to music, for example, while you do chores). Meditation helps a great deal, too. I struggle with meditation, but there are lots of great guided meditations on youtube that are super helpful. Breathing helps. Acupuncture is great if you can afford it. You might also ask your doctor to refer you to a pain management clinic. 

Try to force yourself to move. Take little walks, even just around your front yard. Keeping your circulation going is really important for healing. Know your limits, and don’t overdo it, but try to move a little bit every day.

Realize that pain is going to effect your social life. One night out can mean three days in bed. That might be worth it, your call. Make sure when you do go out to take steps to make it a comfortable experience. Buy one of these:

Image

 

There are fancier ones out there, but this helps with sitting. Some doctors will tell you not to sit on this right after surgery because it spreads your butt cheeks and can cause more pain. This wasn’t the case for me, but everyone is different. Bring wipes, gauze, and whatever else you might need while you’re out. I will have an entire post on helpful products, but my point here is that if you do venture out in the world, prepare yourself. It’s like going out with a baby, you need supplies.

I hope this is helpful. I will be asking a few doctors to write guest posts for me about pain management in the near future. If you have any tips for dealing with pain, please comment or e-mail me at fistulasurvival@gmail.com with your advice. 

Leah R. Chatterjee