Putting this behind a cut… because unless you have c. diff / know someone who has c. diff. /or are someone who is really curious about my current state of health (or partial health) this is reallyyy long…
I get emails everyday about c. diff.
More and more people are getting it. More and people are suffering with it, dying from it, and many, like me, are searching everywhere possible to learn how to recover from it.
With almost every email I start off the same, explaining I can only offer my own experience and personal advice— that c. diff is different for everyone, depending on a lot of things:
1. the strain of c. diff acquired.
2. how long you had c. diff before being properly diagnosed
3. how much the c. diff had grown before fighting it
4. how good (or bad) your gut flora was when you got the c. diff
5. if you had dormant viruses living in your system that you may not have been aware of
6. your age
7. your prior health
8 etc etc etc.
There is no magic cure-all from c. diff and the problems it creates in your body. Doctors know this. Scientists know this. And I’ve learned this first hand.
I want to also say that if you’re reading this and worried as all hell, you can get better. And you will! The first thing you need to do is rebuild your gut. The c. diff can’t thrive in a healthy gut. If you rebuild your gut, you will see that the c. diff won’t return!
My recovery was not fast. And it was not easy. As many people learn, recovering from c. diff is not only physically hard, but incredibly emotionally difficult as well. Even today, two years later, I consider myself as someone still in the process of healing. But I was bad, really bad. When the c. diff hit my body, not only did my gut suffer, but my entire system crashed, leaving me in really poor shape.
Am I a lot better than I was two years ago? OH YES. VERY MUCH YES. I’m healthier, happier, and even stronger too. I’m still thin and unable to put on much weight (no matter how many different diets I’ve tried). I still have A LOT of lingering side effects. And my colon? Well, it’s still pretty damaged and incredibly sensitive to a lot of things. Someone else I met recently described post c. diff life best: I am now someone with no reserves. No extra weight, no extra energy for the nights without sleep, no extra immune system (though it has gotten a lot better in the past 6 months or so) for when viruses are lingering, etc etc. I work with what I have and I am cautious with my body now… because I have to be.
As I sit here, two years later:
-My stomach is cramping. Thankfully, this isn’t a constant anymore. This is an occasional thing that happens when I eat certain foods or randomly from time to time without warning or noticeable triggers. This usually happens from eating foods that I know my body now no longer tolerates. I am now that person that I once would side eye– the person with all the allergies. I was once completely allergy free (with the exception of dairy). I am the person who once ate bread daily— now I am the person who has to triple check ingredient lists. Is it nut free? Gluten free? Corn free? The person who has to wonder if my body will be able to tolerate drupes (one seeded fruits) this week– or the pollen from mango trees. I had both corn and soy this week. Either of the two could be the reason for the cramping and constant bathroom trips. Or maybe something else. I don’t know. But two years later, my stomach still has a mind of its own. On the day to day, if I’m very careful with what I eat, my stomach is okay. My bowels are mostly regular now. But my digestion is completely different. With c. diff I went from going to the bathroom 15+ times a day, to about 7 times a day, and now I’d say it’s about a regular three times a day, unless I eat something my body couldn’t tolerate. My body now deliberately expels anything it cannot handle. I no longer drink alcohol. I can’t. I want to, but I can’t. Alcohol induces vomiting and diarrhea about half a day later. So does nuts. And sometimes corn. I just have to be painfully careful. I say painfully, because emotionally, I hate to be the one who has all the food allergies. I’m now *that person* who has to care about what goes in. I don’t like to feel that way, but at the same time, I’ve learned first hand that if I’m not careful, I will pay. And I learned I can’t get too cocky. Too many times I’ve thought, “Oh I’m sure I can eat this now”– and tried– and ended up with intense stomach problems, in bed for two days. I’ve learned it’s not worth it. I’d rather be cautious and feeling well.
-The diet I feel best on is the high carb, low fat diet. After a year and a half trying a high protein and high fat diet– without gaining weight, I switched to a high carb (high fruit), low fat diet. My body has felt significantly better with this switch. This switch felt very extreme for me, especially since I never ate excessive amounts of fruit before, but it improved my health, digestion, and mood significantly. I still eat A LOT– but I always have. After excessive reading on different diets, this one makes sense since fruits are so incredibly easy to digest— and with that, my stomach/colon has to do a lot less work.
-I still haven’t gained my weight back, but that could be due to the lack of bread, alcohol, and processed sugar in my life. Those things used to make me gain weight. Now I don’t have them, its cool. Though, thanks to this diet + a new habit of weight lifting, I do feel stronger. My weight bothered me A LOT in the beginning. Jokes about how “not being able to gain weight isn’t a problem” bothered me. I felt self conscious that people were looking at me thinking I was too thin and weak. It doesn’t bother me anymore. I feel stronger, and thats what matters. I do think I’ll gain a bit more weight back, I just think it’s taking longer than planned.
-Emotionally I feel great. Now. I was so scared and so sad before. I felt so lost and confused. And/but the reality is, everyone is lost in terms of c. diff and gut health. Yeah, scientists are studying gut health. They are researching and finally recognizing the world of our diverse and important micro biome– but we’re still SO far from real answers in this field. After dozens and dozens of useless doctors and tests attempts, I gave up and let go and learned to manage my gut problems without doctors. Sure, my gut is no where near perfect still– but it’s so much improved. I work on the things I can work on and I’ve learned to let go of the things I cannot change. And mostly, I’m just thankful to be alive— and doing so much more than I was doing a year ago and even more than two years ago when I got diagnosed.
-The ringing in my ears is LOUD– almost drowning out any other sound around me. Something I acquired just two days after finally being admitted into the hospital. Not one doctor could offer advice on this. And so two years later, and I have yet to find any sort of cure for this– other than mindfully doing my best to ignore it. This seems to get worse in times where I eat heavier foods/foods that my stomach doesn’t tolerate well.
-Same with my teeth grinding. This seems to be related to my stomach issues. This problem seems to be much more noticeable during the times my stomach flares up. This also started in the hospital and is still a pretty regular problem. Doctors and dentist have offered the suggestion that maybe it’s stress… but I do it even in times of absolute zero stress. Like I said, it seems to be mostly stomach related. On the nights I go to bed with a stomach ache, I wake up with a head ache and a mouth full of cuts and scratches on the side of my cheeks and on my gums from grinding.
-My hydration problems are better. Some of the people emailing noticed this strange side effect too— a constant dehydration problem.. I’m not sure what it is. most doctors seemed to not recognize this at all when I would complain of dehydration despite drinking a lot of water. I had chronic low blood pressure issues after the c. diff. and every doctor told me it was because I was dehydrated. I would explain to them how I was constantly drinking water (60-90+ ounces a day) and they seemed to think I was lying about this (why would anyone lie about drinking water?) and told me to drink more water. This problem is gone– it eventually went away on its own.
-My chronic fevers went away. I had ups and downs in my health for over a year. It was frequent in the beginning. A chronic fatigue feeling with constant joint pains, fevers, and overall ill feeling. It went from happening more than not, to about a third of the month, to a fourth of the month, to only a few days a month. I don’t get the intense fevers, but I do get a general ill feeling/fighting off a virus feeling a few days a month still. I’m still hoping this will continue to get better and go away over time. I’m really hoping to combat this completely. I can’t pin point if this is hormonally related or not, since my cycle has not been regular since getting c. diff.
-Heart palpitations/ night sweats /chills /tingling feeling: that basically all went away with my chronic fevers. Like I’ve said– I had A LOT of strange symptoms flare up when I got sick with the c. diff. It makes sense why so many doctors tried to diagnose me with lyme. My body was all over the freaking place. My limbs will still get numb/tingly every once in a while, otherwise all this weird stuff has improved.
-Dizziness / vertigo /overwhelming brain fog – this has gotten SO much better. It was so bad that I wasn’t driving for months. Gosh it was bad. It was slowly getting better over time, but I didn’t see significant improvement with this until I switched my diet to a high carb/ high fruit diet. I still get really dizzy when I need to go to the bathroom (read more below), but otherwise this is much better.
-My joints no longer hurts. Usually. My joints ache when the humidity is high– but its mild and totally bearable. When. I first got c. diff there where points where I could hardly walk my joints ached so bad. I definitely do not struggle with this now.
-My colon and I have become really close (half joking). Unfortunately. It feels crazy to be so in-tune with a part of my body– but I can really notice the difference in certain things now. Before c. diff I didn’t have to give a second thought to needing to use the bathroom, but now I feel really good or really bad depending on the state of my digestion and the fullness of my colon. If I need to go to the bathroom, then I NEED to go to the bathroom. I feel really ill/nauseous/ and hot until I clear my bowels. It feels like a mini fever or hot flash in my body to the point where I feel like I could throw up when I need to go to the bathroom. Similar, but no where near as intense as the feeling when I first had frequent bathroom trips with the c. diff.
-Gas and bloating: Still got it. Don’t you love how c. diff is basically a big game of TMI? Well… okay, so the gas: I do get super gassy— my colon still gets like a giant balloon of air. Luckily, the gas is completely odorless. It’s just embarrassingly loud. I had a lot of SIBO like symptoms for a while– they would come and go, but that seems to be completely under control now. The foods (on my yes list) that cause me the most bloating are (not surprisingly) cauliflower and broccoli. I do eat the from time to time, but cautiously, chewing well. But yeah, in the morning (especially after rough nights of stomach problems) there are giant air bubbles moving in my colon. I can push down on them, and they just move around and come and go. I’m thin, so these gas pockets are actually pretty visible on my stomach. It’s really kind of silly looking. Luckily it doesn’t really hurt that much anymore, I just have to remove the gas from my colon and I’m good. When it is painful, I just chug a lot of water (think 4-5 cups) until the gas can pass. Yay TMI.
-More colon stuff: I mentioned it, but my colon does act up from time to time with no rhyme or reason. During the flare ups, I have all the symptoms of colitis. Not sure if thats a permanent after symptom of c. diff, but maybe. It’s not super frequent though, thankfully.
-My immune system is functioning much better. Basically everyone I have talked to has suffered from the undeniable side effect of completely lacking any sort of well functioning immune system after c. diff/antibiotic use. After c. diff I caught and fought everything. I’m so happy to say that my immune system (minus the allergy problem) is doing SO much better.
-I no longer take supplements. Mostly. I do carry and take probiotics when I’m traveling for extra caution. I add spirulina to my food still– yes for extra iron + protein, but also, because I’ve really grown to like and crave the taste of it. I take the occasional b12 supplement, because I’m vegan. I’ll take some extra vitamin C when theres a virus going around. But on the day to day, I don’t wake up and worry about what I need to take. I don’t *need* to take anything anymore.
-I still feel frustration at the doctors visits I had and the lack of help I received. And I try to remind each person that emails me with the same complaints that they are not alone in this struggle. Doctors are human and the science is not there yet and beyond their (and our) current understanding. It literally hurts me to think about the other people who are going through this struggle too. I know what it’s like— I’ve been there. It was painful and repeatedly broke me. I’ve slowly put together many of the vague undiagnosable symptoms Ive had for myself and have been able to handle most of them.. and I do my best to work through and function well in the symptoms that are still present. Because thats all I can do.
If I had to guess, I would say that the c. diff + antibiotic I took (clindamycin– followed by flagyl and vancomycin for the c. diff) woke up a strain of EBV that I didn’t know I had. I think that this is what gave me a lot of these really odd and vague symptoms. Again, this is only a guess on my end– but it seems to make sense, as a lot of EBV symptoms seem to line up with symptoms of lyme (which a lot of doctors told me I might have). While some of the doctors I met with still might say they think I have lyme, I don’t think I do. I also still have no idea if I did catch something viral in India or here at home. It’s pretty possible, but given that so many of these symptoms have been chronic and long term, the EBV guess makes more sense than anything to me. I don’t know. And maybe I’ll never know, but I got to the point a long time ago where I stopped caring about what I may or may not have, just a long as the path to healing is present.
Overall, I’m grateful to feel how I feel. I have stupid high standards for myself and I would not in anyway say that I am *thriving in health*— but I do feel more and more healthy every day. I look back and I can remember parts of the c. diff nightmare and I still can’t believe all that I went through. The word ‘nightmare’ can feel extreme, but I think so many people would agree that suffering from c. diff (and the problems that arise from it) is in fact an intense and terrible nightmare. I wouldn’t wish it on my worst enemy. It’s also crazy to say it, but I also think most would agree: c. diff is a good lesson in life and health. C. diff forced me to really look at my health, diet, and life in a completely different way– in a way I wouldn’t have done otherwise. I am now very mindful of each and every moment I live and breathe. I understand my body now more than ever before. I take care of myself and no longer run my body unnecessarily to the ground. I take extra care to treat myself well (as well as the people who chose to be in my life). My life is thriving again two years after c. diff. And I am forever grateful for that.
If you’re looking for more of my c. diff posts, you can check out:
what to eat and avoid after c. diff.
my c. diff supplement list.
a few c. diff friendly recipes I’ve posted
and a diary of my food experience and healing
I hope some of this info helps some of you or your loved ones. Again, I’m not an expert by any means, I’m just sharing my own experience and healing trial and errors. <3<3