So many questions ...

[JJM]

Hello, first time posting and it's a lengthy one so please bear with me. I also hope I'm posting to the right board. Here it goes ...

For some background:

I'm a 42yo female. I was diagnosed with C Diff about a week ago. I started with flagyl but had side effect so now on vancomycin and have about 7 days left (10 day treatment).

It took about a month for me to get diagnosed. In early September I had some loose stools for a day and a half but having a whole lot of other symptoms as well (abdominal pains, diffuse chest pains, bad acid reflux, back pain, shoulder and neck pain, leg spasms -- even abnormal vaginal bleeding). I went to Urgent Care who ordered a CT scan of the abdomen and pelvis. Nothing acute was found so I saw the GI doc.

Since my loose stools happened on and off, the GI doc just ordered a sono of the abdomen and an upper GI series plus some bloodwork to check my liver. A few days after seeing the GI doc, my chest pains made me feel really bad so I went to the ER. Everything was normal -- bloodwork, chest X-rays, ekg, enzymes, etc. They told me to follow-up with the GI doc and a cardiologist and a neurologist and my PCP. I still need to do the imaging tests for the Neurologist but so far every test has come back normal and people were starting to think it was all in my head and I suffered from anxiety.

I knew something was wrong with me because I could feel it.

Back in July, I was prescribed Clindamyacin by Urgent Care for an infection since Doxycycline makes my stomach upset. It's in all my charts/EMR but I guess the GI doc didn't think right away it could be C Diff because I wasn't really having diarrhea or showing the 'classic' symptoms. I was having loose stools but not 3x a day or more. I maybe had diarrhea sporadically, one day here or there. GI doc even gave me dicyclomine but that immediately triggered a loose BM overnight.

He finally ordered a stool test which came back positive for C Diff. He didn't really offer much guidance or info on C Diff and what I should do. Most have been my scattered research here and there which made me feel so scared, anxious and alone.

After asking, they did tell me it was very contagious so I was so worried that I might have spread it to my husband and family members since it took so long to get diagnosed. On top of that, the other symptoms like the chest pains were still there so I honestly thought I was going to die. After a complete physical with my PCP, another ER visit, multiple visits to the Cardio where all tests came back normal, I thought I was never going to feel like my old self again. I was I was at such a low point that I went online to look up C Diff support groups online and found this forum which has been an absolute godsend.

I pray that soon enough, I'll be able to post a success story here as well ... In the meantime, hoping you all can help and share some of your wisdom/experience with the questions I have below:

*How did you know you were getting better?
I asked my GI doc if there's a test to make sure the c diff is gone and he said no. It's all done clinically -- when you no longer show symptoms. But since I didn't really have the classic symptoms, I'm struggling a little to determine if the meds really are working. I will say that the chest pains seem to have subsided (comes much less frequently) after taking the C Diff meds so it's possible it was related. My stools the past couple of days have somewhat been formed to fully formed (sorry if tmi) which I haven't had in a month ... would this be a good barometer to determine improvement? Are there other things you noticed as you got better?

*Is there a reliable way to confirm that one is C Diff free?
Again both my GI doc and PCP said it's all done clinically but this whole experience has made me so paranoid, it would really help give some peace of mind if there was such a test.

*How did you know you're no longer contagious?
Do you become less contagious after you start taking the antibiotics? I never got a clear answer from my GI doc.
Again, because it took so long to get diagnosed, I worried that I've unknowingly spread the spores. But because of my other symptoms all the other doctors I've seen want all of these imaging tests and follow-ups done. I don't want to delay the tests but I also don't want to be irresponsible either.

*When did you start feeling hunger pangs after treatment?
For now, I eat a scheduled meal times, but I don't think I feel hunger pangs and wanted to ask if anyone has ever gone through that.

*When did you start to expand your food options? Did you wait until after finishing the vancomycin (or other meds)?
Originally I was just eating basically, toast, bananas, roast chicken breasts, baked potatoes, rice, clear soups and boiled meat/chicken. I've started to add a lactose free yogurt (that has some probiotics) in the morning to give the vancomycin a boost. What foods helped you make the transition to eating normally again?

*How do/did you stay hydrated during treatment?
Originally, the ER doctor told me to drink watered down Gatorade but it made me super acidic. I've been drinking coconut water but can't really drink a lot of it and open to other ideas?

*Did any of you feel any nerve related pains because of C Diff?
I've been experiencing a lot of tingling in my legs almost constantly, I can sometimes hear throbbing in my ear that and jaw pain that radiated to the sides of my head. The vancomycin seems to have kept these somewhat at bay so curious if there might be some correlation if anyone else experienced them.

*Have any of you experienced low potassium levels?
In my 2nd ER visit, the bloodwork revealed that I had hypokalemia (which they said caused the tingling in my legs) even though I really wasn't having D ... has anyone ever heard of a correlation between that and C Diff? I've had it before even taking the vanco, too. My GI recently ordered bloodwork to test the potassium but it was in the range (admittedly on the low side of the range). Have any of you used a potassium supplement?

*Similarly, did any of you ever have any back pains or chest or groin pains while dealing with C Diff?
I've noticed that around the time the vancomycin wears off, my back pains begin to start back up. And sometimes, I feel like my breathing is not normal but it clears up once I burp or pass gas (again, sorry if tmi). Every Dr I've asked said it's all muscular but I'm not totally convinced ... (not seeking medical advice -- just trying to determine if it's rarely associated with C Diff). I'm hoping the imaging test the Neuro ordered will shed some light here as well.

*For people who have experienced fluctuations in your heartrate and/or BP possibly due to C Diff, how have you managed?
My Cardio doc doesn't want to put me on a monitor because he said nothing is wrong with my heart but I know something is off. It just happens that when they check or do their tests, my heartrate or BP are just elevated and not high enough to warrant any medication/specific attention. It's driving me crazy because I now what I'm feeling but would welcome any tips/ideas on how to cope. Are there any studies out there linking C Diff to heart issues that I can show my Cardio doc?

*Did you still feel abdominal pains (upper, lower or both) a few days into taking the vanco?
I have been experiencing a lot of gas, bloating and grumbling in my belly ... which might also cause the abdominal pains. I've read about PI-IBS on the topics here and wondering how to determine if the abdominal pains is from PI-IBS or C Diff.

*Are you aware of any guidance regarding how soon after C Diff treatment you can undergo a procedure?
Initially and before my C Diff was confirmed, my GI doc suspected my issues were in the upper GI and wanted to do an Endoscopic Ultrasound. It's scheduled for Wednesday next week but I'm due to finish the vanco this coming Sunday. My GI doc's office, said C Diff shouldn't affect it, but I'm more concerned for my state of health (would still be in recovery mode at that time) plus if they'll need to give me any antibiotics after the procedure.

*When did you feel comfortable to go out (shopping, grocery, meeting with other family, friends)?
I figured this depends on the frequency of the BMs. Or did you only start meeting with people long after treatment/recovery?

*When did you stop disinfecting the bathroom (toilet/sink) after every BM?
Did you feel comfortable stopping once you finished the antibiotics? My husband and I have a small house with only one bathroom. Luckily, he hasn't needed to use the bathroom while I disinfect and wait for the bleach to dry for 4 minutes (I was able to get a hold of some bleach wipes)

*Did you also disinfect your tub/shower after showering?
Since our tub is glazed, using bleach on it might cause the glaze to chip and thus trap more bacteria/germs. Would regular tub cleaners (eg. bar keepers friend)/disinfectant sprays work?

*Did you have to sanitize/disinfect your entire house after getting C Diff?
This one is a big one for me. Again, because of the long time to get a diagnosis, I became consumed by the fact that my entire house is contaminated. I've become paranoid that spores are lurking everywhere and I won't be able to invite my family over ever again. The though of cleaning and disinfecting everything overwhelms me and was curious what you good folks here have done - especially for fabric couches (no removable cover), cushions, beds, pillows, large area rugs,

*Did you have to do anything special to clean your clothes when you do laundry?
I have honestly considered buying new and really cheap clothes that I can just toss afterwards. It's really more for the clothes I had been wearing or washed prior to getting the diagnosis that may have gotten 'exposed' to spores since it took so long to get my diagnosis. My husband and I always washed our clothes separately but is there anything he can do to make sure his clothes don't get 'contaminated'?

*Any idea if passing gas also releases spores?
This seems like a silly question but I am super curious especially since I've been having a lot of gas lately now that I'm on the vanco.

*For the ladies, did you have to deal with C Diff and the "red visitor" at the same time? How about PMS?
Did you feel like it made the symptoms worse, better? I honestly think my hormones have gotten way out of whack because of this but, again, my bloodwork came back normal which makes it so frustrating.

*Is there a getting back to normal/old self after treatment (and recovery)?
The success stories here have given me hope but sometimes there are days when I feel I take 1 step forward then 2 steps back. This past Saturday would have been my 10 year wedding anniversary. Our plan was to go to overseas to celebrate but Covid had other plans. Plan B was to go to our favorite restaurant but C Diff took over. I used to love travelling, trying different foods, hanging out with my family. We've also been trying to conceive for years and I'm scared that having C Diff will make that even more difficult than it already is/has been. My family has been so supportive and patient with me calling them over the phone even at odd hours just to talk because I'm feeling helpless and afraid but I also want to give them a break sometimes and convince myself that I'm strong enough to weather this. What coping methods have you tried that worked?

*How have you broached the subject of having C Diff with others?
Ironically, because of Covid, the place I worked for had to file for bankruptcy and I've been just at home. I need to start applying for jobs again but curious how people who have had to go through this while working were able to deal with it. Also, with all the social distancing, I haven't had to meet with other people either like extended family. We have a lot of young kids in our large family so again, I just want to do the responsible thing. I feel like there's such a stigma around C Diff that I'm also curious what reactions you've gotten when you've mentioned it to others.

*Do you have any tips for my husband/family about staying sane as well as we go through treatment and recovery?
As anxious, paranoid and scared as I am, I feel that it's also somewhat affecting the people around me too. I feel like every new thing I feel sets me off to worrying and they get the brunt of the emotional strain I'm going through. I've had my husband sleep in another room just in case I am still contagious ... and have to wonder he might feel just as alone at time as I am. And same for my immediate family. How have your families made it through this difficult time?

I actually have tons more questions but I'll stop here for now as I feel like I've pushed the limits of this post.

If you're still reading my post I thank you for your patience. You all are an inspiration to me and hopefully I can learn from you all how to better cope/deal with what I'm going through other than feeling so helpless and uninformed. Seeing how all of you were able to beat this makes me feel I can too!

[poppy86]

Hi JJM, I'm sorry to hear you've been diagnosed with cdiff. I hope you recover fully very soon. I was diagnosed with cdiff back in March, and like you, it was after taking clindamycin. Vancomycin worked for me. This website is an invaluable resource, with many caring and helpful members.

I'll try to answer some of your questions. I did develop some post-infectious irritable bowel syndrome after the cdiff and am still dealing with it. Some people get totally back to normal and feel fine after, and I hope that is the case for you. My gastroenterologist recommended returning to my usual diet ASAP rather than sticking to a bland diet, but what is right for each individual can vary. Some people are lactose intolerant after cdiff. I have some food intolerances now, so I have to be careful what I eat. I drink plain water to stay hydrated, room temperature, not too hot or cold.

I have found that, due to my IBS, the days leading up to my period are harder. My symptoms include more frequent bowel movements and often D, along with some gas and bloating. I've come to expect it. Another symptom of the IBS is a lot of rumbling/churning/gurgling noises in my stomach, which I've gotten used to at this point.

My doctor told me that once symptoms subsided, I was no longer contagious, but I still kept up the bleaching and rigorous hand-washing. Keep in mind that surfaces that you bleach should be visibly wet, and it takes 10-15 minutes for full disinfection to take place. To my knowledge, nothing except bleach will kill cdiff. As for laundry, I just washed everything in hot water and dried on the highest dryer setting.

I don't think there is a test for cure. If you are symptom-free, you are considered cured.

I highly recommend getting mental health support during your recovery, if possible. I have a history of anxiety, and cdiff made it far worse. Try to rest and relax as much as possible and take good care of yourself. I hope you feel much better soon.

[JJM]

Hi poppy86,

Thank you so much for reading my post and for your supportive reply!
Hearing that the vancomycin worked for you is truly encouraging for me as well.

I'm sorry to hear you're still dealing with the post-infectious irritable bowel syndrome though it sounds like you've been able to manage it so far. Was it your gastroenterologist that diagnosed the PI-IBS? I have an office visit with mine in 2 days and want to confirm if I do have it since I'm having the rumbling/churning/gurgling noises and bloating.

My gastroenterologist actually told me to eat a low fiber diet last week. I actually already started moving away from bland food about a couple of days ago. I had noticed that only when I started to eat more normal food that my BMs became more normal too. Like you said, everyone is different, and we just need to figure out what works for us. Can I ask how you figured out what foods you can no longer tolerate? I had a reaction when I tried to eat salmon 2 weeks ago and have been considering seeing an allergist and/or a nutritionist.

So far, I think I've been able to tolerate gluten and lactose (I ate regular greek yogurt and seemed fine but have switched to lactose free greek yogurt since the regular one was too acidic). I've read on posts here that kefir and sauerkraut helped them but I'm worried they might also end up being to acidic for me. Probiotics never really sat well with me in the past so trying to get as much of it as I can through food.

I would really love for the tingling and the chest/heart symptoms I've been experiencing resolve as well once I'm 'cured'. It still baffles me that being 'symptom-free' is the measure for being cured or no longer being contagious ... even after having the formed stools I'm still feeling the tingling and the chest and heart symptoms/back pains unless it's due to the inflammation from PI-IBS (which I suspect I have). I do still have about 5 days left on the vancomycin so we shall see.

As for the period pains, that's a bummer that it does make it worse for you leading up to it. I just got mine and it would explain why I felt so rundown the day before. Good to know for next time.

I plan to keep bleaching the toilet/sink and hand-washing at least until I finish the vancomycin this weekend -- My hands are super dry now from washing my hands so frequently. I was lucky enough to get a hold of the bleach wipes used in medical offices that only needs to stay wet for 4 minutes. In the beginning, I was using that Clorox disinfectant+bleach spray but the wipes made it so much easier/more manageable (with less fumes!).

The only tough part is figuring out how to clean everything else. Most of my clothes have to be washed cold so I'm wary using the hottest settings on the washer and dryer. I think one of my biggest takeaways from all of this is realizing that there are things I can and cannot control and knowing the difference between the two. I've always been a bit of a perfectionist and I think I need to start being content with doing the best I can.

Mental health support is so key! For now, I've been leaning on my husband, family and PCP for this and they've been so supportive and understanding as well. Resting and relaxing seems a much more difficult ask, but I am trying and I feel like the more I know, the easier it becomes to stay positive and not be as anxious.

I am hopeful that you and I, and everyone on here, will get as close to our previous/normal self at some point soon. Please do take care of yourself, too, and stay well!

[beth22]

Hi JJM and welcome to the site. Sorry that you are going through this.

I did not take special precautions doing laundry, but I know others have washed their clothes separately. My husband and I shared the bathroom during all my bouts with c diff as well as sleeping in the same bed, and he never got it, even when he took antibiotics. I know you can shed spores for a long time and I don't think anyone can really say when that stops, but once you stop having D, you should not worry that much about cleaning the toilet after every bm.

The correct protocol is not to test after you finish meds, unless you get your symptoms back. In that case, sometimes it is good to test to make sure it is in fact c diff because IBS symptoms can be similar and you don't want to start meds if you don't need them.

As far as appetite, I got more nauseated on vanco for the first few days, but afterwards, my appetite returned. My stools got looser on vanco, but when I added some probiotics, that helped. When I was on vanco, I could eat most everything, except dairy. But, when I got off vanco, the food intolerances started. Anything with fiber bothered me - fruit and vegetables especially. Everyone is different. See what works for you.

[JJM]

Hi beth22,

Thanks so much for replying to my post! I've read several of your posts here and I really admire your dedication to this site.

I feel a little bit better after reading how you dealt with your laundry and bathroom cleaning. I've never really experienced a lot of D so I've mostly been gauging by whether the BMs are still loose or not -- hopefully that counts. So far, they haven't been loose. Not sure if BM smell is considered a symptom ... I might have to post that in the TMI forum.

Last night was pretty rough for me. I barely slept because I was tingling all over and I felt like my heart would beat irregularly when I would fall asleep or wake up (if I ended up falling asleep). I also felt super bloated. I felt some relief from the bloating this morning after a BM but tingling came back. I've made an appointment to see the GI doc today and also made a call to the Cardio doc. I think an older post here mentioned that IBS can stimulate the vagus nerve. Since I've felt these even before taking the vanco, I'm not positive it's a side effect but I'm also worried that once my round of vanco is done this weekend, these symptoms will get even worse. So far, no one has mentioned if I have IBS.

For this morning, I've just gone back to eating bland foods. Vanco did seem promising the past few days and I really thought things were looking up.
I do hope it's something simple as low potassium again or some kind of vitamin deficiency so I can continue with the Vanco and really start to feel completely better.

[NanciT]

Hello JJM, Another Welcome

Make sure to have your electrolytes check when you see your GI. You mentioned you had symptoms Before Vanco, but there is no question Vanco can cause severe low potassium. It is listed as "rare" but I landed in the ER several times when I was on a Vanco taper in 2014/15.

In my most recent case of CDIFF, I developed a rash also while on Vanco so I was not able to take it. I just finished a long taper of Dificid.

Make sure to drink smart water or another drink that does have electrolytes, I found this helped

Hope you feel better soon

NanciT

[poppy86]

Hi JJM, I hope you get some answers soon about the tingling and irregular heartbeat. While I had cdiff and during treatment, my heartbeat was very elevated, like 115 beats per minute. When taking vanco, I had some bladder pain and discomfort, so I made sure to drink plenty of water. Also, for several months after I had some tingling and odd sensations in my legs as well, possibly due to electrolyte imbalance.

In the spring I had a flexible sigmoidoscopy done, and my gastroenterologist concluded that my lingering symptoms were PI-IBS. I slowly tried to introduce new foods, and that's how I discovered food intolerances. For instance, anything high in sugar or fructose, including fruit, juice, or carbonated drinks, will give me D. Certain fruits, like cherries, cause a lot of gas, pain, and bloating. I try to eat foods with soluble fiber as a "cushion" before eating foods high in insoluble fiber. Eating too quickly or too much at once can trigger D. Foods that are very high in fat can cause D too. You mentioned that you had a reaction to salmon, which doesn't surprise me. I can only eat very small portions of salmon.

It can take a while for the gut to heal, so try to be patient. Since you're still taking vanco, it's probably too early to tell if you have IBS. I hope you feel better very soon.

[JJM]

NanciT/poppy86 -

NanciT -- thanks for the welcome! The GI doc ordered bloodwork for another metabolic panel so hopefully I'll find out where my potassium and electrolyte levels are now. I have been drinking some coconut water but just grabbed a smart water too. Sorry to hear you had to end up in the ER a few times for the low potassium. I'll make sure to stay hydrated, too!

poppy86 -- thanks for sharing that info, especially the irregular heartbeat. I was able to get an appointment with the cardio tomorrow so I'll mention the palpitations keep recurring. Did your GI doc order the flexible sigmoidoscopy or did you insist to have it done?

That's quite an extensive list of food intolerances and symptoms. I can't believe you also have a reaction to the salmon -- just seems so random, doesn't it? I'm sure I'll have to work at figuring out what my triggers/intolerances are ... As you said, it's still too early to be tested for IBS but I hope figuring out what I can/can't eat right now will help with getting through the remainder of my course of the vanco and eventually recovery.

For those of you who took Florastor, the GI doc mentioned it today ... I bought a box and had a question of when you took them since it says to take it 2x a day. Did you just take one in the morning and one in the evening (of course not a the same time as the antibiotic)?

Thanks again!!

[Ali-Mar]

Jim I am so sorry to hear you have C Diff.

I took 2 Florastor pills in AM and 2 at night as per the instructions on the bottle, and I was told by dr it is okay to take it with abx but I took it 2 hours after my abx.

When I was on the med for C Diff in spring and summer of this year, I had a lot of upper back pain, leg pain, and muscle pain as well. I also had some neurological issues but I thought they were side effects of Flagyl that I took for 8 days.

I hope you will get better soon

[JJM]

Hi Ali-Mar -

Thanks for replying!

I had bought a box of Florastor then read a post here that said that you shouldn't take it if you are having any bleeding.
I don't have any bleeding that I can see but not been tested for occult bleeding.
Did your doctor test you for that before you started taking the Florastor?

So far, I've been trying to get my probiotics from food. I mentioned VSL to the gastro but he said it would be too expensive.

I'm sorry that you experienced all those body pains and neuro issues too. I do think, for me, some of it is legitimate neuro but I also think the rest of the body pains are connected to the C Diff or the meds. Flagyl made me feel like normal for a day but made me feel awful (really loud ringing in the ears) the day after. GI doc then switched me to Vanco.

I do hope you're feeling much better now! Be well!

[NanciT]

There is a generic version of VSL that I switched too with no issues. It has the same ingredients. I get it at Costco and it's less than 1/2 the price of VSL in case you are interested.

NanciT

[JJM]

Thanks, NanciT!
Good to know.

[Ali-Mar]

Yes, I was tested for many things when I originally contracted C Diff and one of the tests was to check for blood in the stool, which was negative.

I think all of the neurological issues are related to Flagyl, it is listed under the side effects. I had twitching in my upper back for over two months started 3 days after I took Flagyl. I had upper back pain also for over 3 months which also started a few days after starting Flagyl. So as leg and calf pain etc