Thanks/rant/recurrence?

[CPM42]

Firstly, a big thanks to the moderators and contributors on this site. Your information and stories have really helped me in dealing with this four letter word condition. I figured I would post in TMI as I sometimes forget not to share certain details.

My background:
I'm a 34 yr old male, and I've been dealing with chronic ear infections my whole life. I had tubes (twice) as a child, and that resulted in holes in both of my ear drums. Turns out, ear drums hate being perforated and when not perforated they do a great job of keeping bacteria out of your middle ear. At the end of October 2015, a got a particularly nasty one (careful when wearing over the ear headphones and sweating at the gym, apparently) and was put on Amoxicillin (per usual). That particular antibiotic used to cause me zero problems. In the past few years, that has changed. Let's just say, eating became less fun as it resulted in a bad, bad time in the bathroom. I do the whole yogurt, probiotics/bland food thing and that helps a bit, but nothing really keeps the D at bay. But, I get through the 10 day course and within a couple of days the intestinal issues fade.

This time, however, exactly one week off of Amox, trouble started. I was running to the bathroom 8+ times a day, resulting in what we all here are familiar with, mucus/blood/watery bad times. I describe these symptoms to my doctor, and he (thankfully) recommended I get tested for c diff right away. The test came back positive for c diff, and my doctor put me on a 10 day course of Flagyl. (After reading a lot of the stories on here, I now realize just how lucky I am. I did not experience much pain (really just some mild discomfort), and I never had a fever or nausea or emergency room visits such as had been described here. I have a lot of respect for those of you who have endured the full severity of this disease and managed to keep a positive attitude and have parlayed your experiences into help for others. Bravo.)

Flagyl worked pretty quickly for me, reduced the symptoms within a couple of days and I didn't experience any notable negative side effects. I was feeling pretty good, almost back to normal after that 10 day course and assumed I could go back to my routine. Gym, work, eat, work, sleep, gym, etc. Exactly a week after I finished that first course of Flagyl, c diff came roaring back. My doctor recommended a 14 day course of Flagyl (gave me a list of options, including the stronger antibiotics, but my case was mild and Flagyl was very effective the first time) this time around, and relatively the same thing happened. A few days in, I was feeling pretty good, went back to work and kept my fingers crossed.

That course ended 16 days ago, and it's been eggshells ever since. I haven't exercised in a while, feeling too weak/dejected for it. Started taking Florastor due to it popping up in a lot of c diff recovery stories. I'm a very skeptical person, so I don't put much merit into how well that works but, hey, I'll take a placebo affect. Doesn't seem to be making things worse for me, so why not? Past few days I've been getting the somewhat mucusy, hurried movements. There wasn't that "Uh oh!" urgency like I had while CD was going on, but it started making me very anxious (which is just great for GI issues, right?). Today was not a great day, went 4 times and they were all borderline scary. A mix of solid and not so solid and mucus.

I read through a good bit of this site, saw the whole IBS-PI 3 day rule and that's helped a lot. I know we aren't doctors here, and I'm not taking anything as practiced medical advice, but I consider everyone here a big authority on this stuff. It's tough not being able to talk to your friends/family/girlfriend about this in detail because they can't really understand it without experiencing it. It would be great to be able even just spend the night with my girlfriend and not be petrified of getting her sick (I understand how unreasonable that is, but c'mon, we've all been through that).

After round two of CD, I bleach cleaned what I could, followed the laundry washing suggestions. I've done all I can think to do, but I can't stop worrying. Every stomach gurgle or bit of gas has me wide eyed. I've never had anxiety before, people who deal with that all of their lives are friggin' warriors.

I just really, really hope it's not back. I keep having to push my ear surgery back (to fix the holes, to stop the infections) as it's very likely I'll have to take antibiotics in the weeks following the procedure. It's got me down, I'm trying to stay positive. I want to get back to having energy, and being with my friends and family. It's rough, and you all know that. A lot of you have had it rougher, and it's very admirable that you've stayed strong throughout all of it.

Thanks for reading, sorry for going on and on. It's hard being tired and not being able to sleep.

[beth22]

It's hard to say if you are getting ready for a recurrence. Florastor did not agree with me, but it does help others. It is a yeast. You might try adding a probiotic that is bacteria like VSL#3 or one of the others that has multiple strains. There is also a study that showed that drinking kefir helped people not relapse as often as those who did not drink it. There is also a product called EnteraGam that is a "medical food" that helps to bind up c diff toxins. It is for IBS-D. It needs a prescription and is expensive, but some insurances cover it. Cholestyramine also binds up toxins. It is an old medication used to lower cholesterol, but it binds up c diff toxins and carries them out. It is not a cure, but it has helped some posters to clear out some of the remaining toxins after treatment. I would ask your doctor about it.

If you do relapse, I would go on a different medication. Dificid is supposed to be more effective than vancomycin, but either are better than Flagyl. See how it goes. As far as getting your girlfriend sick, I can tell you that my husband never got c diff and I had MANY relapses. In fact, he was my first donor for an FMT.

[seekingcure]

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.
“Doctors” lists physicians our posters recommended and also a worldwide list of C. diff. specialists with contact information. (Many perform FMT's.) See the forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.
The majority of patients (about 70%) recover with one to two rounds of Flagyl, vancomycin, or Dificid. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. 20l6 will be a year of many advances and HOPE.
Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.
For more information, see other support groups including http://www.peggyfoundation.org, Clostridium Difficile Infection (CDI) Support Group, FMT Discussion, Fecal Transplant Foundation, C Diff Foundation, and the UK Support Site. There is also information on some of the better medical sites like Mayo's, Medscape, and WebMD, and the CDC website. Don't use "Dr. Google" to diagnose yourself.
This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. The best protection for you and others is thorough hand washing (soap and water are preferable) and good hygiene by you, those around you, and your health care providers.
No one will understand what you are going through except someone who has/had this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it is.
Again, welcome. Remember, the odds are in your favor. (End of letter.)

I want to welcome you to the group that no one wants to join. What you describe could be normal recovery or could be the beginning of a relapse, really no way to know for sure, only time will tell. Post infectious IBS is quite common after c-diff and that could very well be what is going on with you. Try to watch what you are eating and see if anything in particular triggers worsening BMs. Dairy is often difficult for those with c-diff or recovering to tolerate. If symptoms continue or, certainly, if they worsen, I would ask to be retested. Of course, if you start having watery diarrhea three or more times a day, most doctors would retreat based on symptoms alone without retesting. If you relapse again, I would ask for either Dificid, if you have good insurance that will cover it or Vancomycin. The liquid Vancomycin is very affordable compared to the capsules. Dificid kills less of the good bacteria than either Vanco or Flagyl, so, personally, if money is not a consideration, I would ask for that. Hopefully, things will start to improve for you and you won't need any more antibiotics. However, if you have to take antibiotics again soon (after surgery, for instance) you might mention to your doctor the possibility of taking Vanco or Dificid concurrently with the other antibiotic to try to prevent a recurrence. Some doctors recommend this and others don't, just discuss it with your doctor and see what they think. Personally, I would try to put off the surgery for a few months if it's not really necessary to have it right away to try to give your good flora a chance to build back up some.

In addition to Florastor, many of us take a bacterial probiotic as well, such as VLS-3 and you might consider adding one. Just start with a small amount and see how it affects you, though, as some people are not able to tolerate probiotics and they cause GI issues. Kefir and other fermented foods is another option for getting some good bacteria back into your gut. Again, start slowly and work up as tolerated.

Anxiety goes along with this illness. Believe me, we've all been there. And it's not just a mental thing. When your gut flora is out of balance it affects your brain. Google brain/gut connection. Flagyl itself also caused severe anxiety for me. Once I was off of it for awhile, I started to feel less anxious. Vanco didn't cause those same issues for me and I never took Dificid so don't know how it would affect me.

Lastly, just know that there is a light at the end of the tunnel and you will get well. Hang in there and keep us posted on how things go.

(Some of this is repetitious of what Beth posted as I was typing it at the same time and did not edit after reading her post.)

[CPM42]

Thanks very much for the replies, Beth and Bea! I've scheduled a doctors appointment tomorrow morning, we'll see what happens there. Today was not the best, bathroom wise. I'm leaning towards it's a recurrence over IBS/other. On suggestions from this site, I've started a food journal, only makes sense. I will definitely look into those other probiotics and treatments, will definitely mention them to my doctor tomorrow.

I have pushed the ear surgery to the end of March, hoping that will give me enough time to recover. The worry is that not getting it done soon will allow for more ear infections, starting this cycle all over again. Taking what precautions I can, it's fun to have cotton balls in your ears that have vaseline on the edges while you shower.

The expense has me worried. Like most, money is not something I have in excess. I went from the ACA last year (which worked out great for me, very glad for it) to an employee program this year. Unfortunately, I do not have my coverage information yet. The insurance is in effect, and I can submit claims for reimbursement no problem, but I worry I won't be able to foot the bill in the meantime. An added stress I was not looking for.

Thanks again for the information and reassurance, it has been very helpful.

[Bobbie]

CCPM42
Like the blurb at the end of your post. Clever and smart. You have a great sense of humor. Would you post this in the humor edition?

Ask your ENT if antibiotics are necessary. Sometimes drops (not clindmycin) would be enough. Ask about IV vanco. I recently had surgery on my elbow - 6 screws and a plate - and IV vanco for a day or two. It worked. Do not know if it would work for ear surgery. I had 2 sinus surgeries without an antibiotic. ENT said antibiotics are often not necessary but are given because it is SOP - strandard operationing procedure. I wrote "no antibiotics" on my arms with magic marker. Of course, o they might be necessary. - decision for you and your doc.

[jjglad]

Welcome, CPM42. Sorry that you have to even join this site though! I have been dealing with CDiff since Oct. My latest round of Vancomycin is working so far...here's hoping it stays that way, but it has only been one week since my last pulse dose. Be sure to ask your Dr. about tapering off of one of the better meds this time. if you have tried Flagyl twice already you might want to try one of the others, even though they are more expensive. Our insurance has paid for Vanco. both times I have been on it, esp. since I tried Flagyl in the beginning. Can always call Rx insurance and see if they will cover one or the other? Worth a try so you don't have sticker shock at the pharmacy....IF that is what is needed. I have also been using EnteraGam (received a sample box from GI Dr. office) during my second treatment and will certainly continue it for a while now that I have stopped the abx. I think it helps! Esp. when you have mucus, etc. going on with everything else! Let us know how your appt. goes!

by the way, my cdiff has left me dairy intolerant! one Dr. ran a food allergy test on me during my second treatment and the dairy section lit up like a Christmas tree! :( So no Kefir, yogurt, etc. for me! I have been using probiotics like Florastor, although I saw one person today talk about Jarrow Formulas S. Boulardii and will try that next. Seems to have less fillers then Florastor and a little stronger, so here's hoping it will work too. Florastor can get expensive as it doesn't have many in the box. I have also been taking VSL #3 OR Garden of Life Primal Defense as it is a good probiotic too. The Garden of Life/Primal Defense is a good size probiotic, but full of strains that we need! It has helped my MIL with her Crohns and my BIL with his IBS, which is who gave me some to try before ordering it from Vitacost.

Wishing you all the best in your recovery!

[CPM42]

Ha, thanks Bobbie, I should check out the humor section. Humor has honestly been my best weapon in this situation. That, and every other situation I can recall in my life. Wow, 6 screws and a plate? Sounds very serious, hope your recovery from that goes well. My doctor actually mentioned IV abx post surgery, as well as wondering out loud if any antibiotics (besides the ear drops) would even be necessary, it is outpatient after all. That marker idea is a good one, I'll have to remember that.

Thanks for the welcome jjglad! My appointment went pretty well, actually. Feeling much better today, almost symptom free. Went to the bathroom a normal amount of times today, solid movements with faint elements that I can only connect to c diff. I never had GI issues before this (really missing that now), so my doctor feels I'm probably still just recovering from CD and the amount of abx I had to take over the course of two months. Makes sense, don't think the gut can bounce back very fast from that. I suggested (and he advised) not taking anymore abx for now, see how I feel in the next couple of days. I'm currently not cramping or having that pressure/pain I had, nor am I running to the bathroom every hour. Hoping it's basically just everything attempting to get balanced again. Now that you mention the food intolerance, I'm curious about that too. Before this sort of recurrence happened, I was feeling all confident and had a small steak burrito. Probably not a smart idea. I'm back to salads, turkey and spinach sandwiches, soups, bananas, grapes, apples, pears, yogurt, light pasta, and rice. That seems to be helping a good bit. I will look into those probiotics you mentioned, thanks for bringing those up.

My doctor said that if I feel like things are worsening, he can get a tapered Vanco RX ready for me. He seems pretty confident that I'm on the tail end of this thing, and that really helped me feel reassured. Crazy how much just talking about it and relaxing a little can help. He's even been using my case as a warning to patients requesting abx when that might not be the best for their situation. Hooray, I'm helping! Though I do understand, people get scared when they're sick and it's very tempting to basically just try to nuke the problem. It's much harder to make the decision that doesn't show results right away.

Sorry to hear about that dairy intolerance, that must be a huge downer. Pizza, nooooo!!! Glad to hear your latest treatment seems to be working, I truly hope it's the start of your recovery.

[beth22]

When you have an eardrum perforated, even getting tubes put in, I was told you can't use ear drops. I'm not sure if that is true or not, but check. Also, look at the list of antibiotics in the CDI section. It lists the ones that are high offenders and low offenders. Talk to your doctor about which of the low offenders might be one you could take with the surgery if any are needed. Good luck to you. The list of foods that you are able to eat is much longer than what I could manage after completing my vanco treatment. It sounds like you are doing pretty well and I wish you continued improvement!

[CPM42]

Thanks very much, I'm hoping so too!

I've had these holey ear drums for 30 years or so now, pretty tired of them. I have been taking ear drops at various times in my life, it's not pleasant but it is okay for certain prescriptions. I will definitely check out that list, and will make sure the surgeon is on the same page with that.

Good thing I'm still in the TMI section, got a quick question. Anyone ever have an issue with ... I guess let's say seepage, during recovery? Never had this before. It's not excessive, but it is notable. A faint smell, occasional faint marks on boxer briefs. I just wind up "cleaning up" and changing my underwear. Again, not really crazy, just confusing. Can't point to a specific food or anything. Thanks!