Jill 37/f New to C. Diff

Veteran support board users and new posters - use this forum to talk about whatever you want. Topics may be C. diff. related but are not required to be. Post here about posters' birthdays, holiday greetings, vacation plans, etc. If it doesn't fit in another forum, put it here.
Jill79
Regular Contributor
Posts: 119
Joined: Mon Jul 18, 2016 10:51 am

Jill 37/f New to C. Diff

Postby Jill79 » Mon Jul 18, 2016 4:42 pm

Hello,

I have read the rules and regulations but I was still unsure of where to post as a new member recently tested positive for C. Diff, so please correct me or move this post if necessary. Apologies in advance. I also feel a little bad posting because my symptoms have been much milder than the accounts and stories I have been reading, but maybe my experience can be of help to someone else.

So I wanted to introduce myself since I've been on this site a lot over the past few days after being advised that I tested positive and had no information to go off of. I had an appointment scheduled with my GI before my test results but they won't see me until after I finish my first round of Flagyl for the obvious reason of being contagious. Luckily I was told that either the GI or assistant will be phoning me to discuss things and answer any questions I may have after reviewing my results from the sample tested at the request of my primary doctor.

I'm a relatively healthy 37 yr old female with Generalized Anxiety Disorder (GAD) / Panic Disorder / Depression & IBS that has been well controlled with weekly counseling and anti-depressants which I do no abuse for the past 18 years.

Without rehashing every detail of the past three weeks, in a nutshell here were / are my symptoms:

1. WD about 3x per day for 3 days. Afterwards to present - soft / loose / sometimes C but no WD and no overpowering odor.
2. Dull lower abdominal pain. Mainly lower right in the beginning. (ER ruled out Appendicitis, had a small ovarian cysts that dissipated, abdominal CT w/contrast, pelvic ultrasound, OBGYN advised no infection, blood & urine tests normal. Only concern is an "incidental finding of a possible benign lesion on my liver" which I will be having an MRI for once I'm retested for C. Diff.)
3. Nausea, no vomiting.
4. Bloated feeling.
5. Weight loss. (15 pounds in about 2 weeks.)

About 3 weeks ago I started experiencing the lower abdominal pain and was also being awakened every night around 3:00 am with severe panic, anxiety and hot flushes that took a while to go away. Was a frequent flyer in the ER 3 times mainly due to the anxiety but they did the above mentioned abdominal testing due to my complaint of pain. They did a preliminary blood test to check my thyroid but tested normal and my OBGYN advised that my hot flushes were most likely not hormonal since I'm still on birth control.

Currently I'm sleeping better but out of work on temporary disability at first due to my panic / IBS flaring up but for longer now until I test negative. I'm on Flagyl (generic) 500 x3 daily. Today is day 3, so I understand it's extremely early in the process. I've been tolerating the Flagyl pretty well except for excess burping, a burning sensation in my stomach at times as well as occasional burning before I urinate, but not always. I have my questions ready for the GI when they call. I've been on the B.R.A.T. diet plus yogurt and potatoes and anything bland on the menu. I had chicken tenders one night when I thought I was feeling better and could tell that irritated my system the next day.

The doctor advised my mother and b/f who live with me to also be tested, especially since my mother has D on a regular basis but also has diabetes and blames her D on the food she eats, her blood sugar being high and her medications. She had an appointment today but rescheduled it for 3 days from now due to the summer heat and her back hurting. I've tried to reinforce the seriousness of what I have with both of them, but I can't force them to get tested right away. I had my b/f clean the bathrooms with bleach and I have a bottle (1:10) that I've been using when I use the bathroom. We changed our bedding and are bleaching / sanitizing the old linens and clothing.

I have a few preliminary questions that maybe I didn't look hard enough to find answers for on this site.

1. Can Flagyl cause increased BMs? (I was at 1 or 2 a day, today I've had 4 but no WD)
2. Is the occasional burning sensation in my stomach and before, sometimes during urination a reason to ask for a medication change or just roll with it?
3. Has anyone else experienced hot flashes or flushing mainly in torso and arms associated with C. Diff or anxiety related?
4. Anyone else experience worse symptoms in the morning than at night? I'm getting the impression that I'm just waking up scared of the daytime due to my anxiety and not being able to live normally. (again I'm sorry that I'm complaining at such an early stage when a lot have been experiencing this for years)
5. Any experience with Donnatal? I stopped taking it when I started the Flagyl because I read it could cause the Flagyl not to be as effective.
6. If I don't experience WD, does anyone know how I would gauge my recovery while feeling so ill on the Flagyl? I'm assuming less cramping and normal formed BMs?

Thanks for reading / listening and please direct me if my questions are answered elsewhere.

Best wishes,
Jill

Oh, I'm pretty sure my C. Diff was from antibiotic use because I had the WD before I was in the ER and I wasn't admitted into the hospital, however I have been in various hospitals & rehabs to visit my Grandmother after her stroke last summer and was careful to wash my hands but I also relied a lot on hand sanitizer which I know now is ineffective. As far as I know my Grandmother does not have C. Diff but I'm sad because I can't visit or help care for her while I'm ill. I'm leaning toward the antibiotic use because I did have some cramping and had to stop a dose due to the pain about two months ago.
Last edited by Jill79 on Wed Jul 20, 2016 4:16 pm, edited 1 time in total.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: Jill 37/f New to C. Diff

Postby beth22 » Mon Jul 18, 2016 5:21 pm

Hi Jill and welcome to the site. It sounds as if you already read the rules about posting. This post would probably be better under the questions section, but we will leave it here. I'll try to answer what I can and I'm sure you will get more responses as the day goes on. First, did the hot flashes start before or after you started the Flagyl? I ask, because I tried Flagyl and had to stop due to tingling and hot flashes. But, with c diff, yes, I did wake up in the middle of the night with this crawly/tingling type sensation on my chest and arms and what seemed like hot flashes. I also got palpitations.

I don't know if Flagyl can give increased bms, but when I went on vancomycin, it did for me.

My symptoms were usually worse in the morning too, after I ate breakfast.

I did not take Donnatal when I had c diff, but I took it many, many years ago. A couple of posters took it and say it has a rebound effect, that is it helps when you take it, but then the problem comes back worse. I don't know if that is true. It is an anti-spasmodic, but there are others out there too - Bently, Levsin. I would talk to your doctor about your concerns with that medication and see if it is appropriate for you or if a different one would be better.

It's very difficult to gauge recovery because it is so different with everyone. Had you been having WD, then that should stop, but since your symptoms were milder, it is hard to say. I don't think that you will really know until you finish the medication. If you get bad side effects, then I would speak to your doctor about switching, but if it is just the burning sensation, mention it to your doctor, but I would probably continue. Vancomycin can affect the bladder according to some posters who have experienced that, so it might not alleviate those symptoms.

Just remember to use good hygiene, which it sounds as if you are doing. Hopefully, the Flagyl will knock this out for you.

Jill79
Regular Contributor
Posts: 119
Joined: Mon Jul 18, 2016 10:51 am

Re: Jill 37/f New to C. Diff

Postby Jill79 » Mon Jul 18, 2016 5:29 pm

Hi Beth,

The hot flashes started before the Flagyl. I still get them sometimes when I first wake up or along with cramping and a BM but not for as long or intense. I'm going to guess they are anxiety related and / or possibly due to the C. Diff or both. My anxiety is still high but I think before I was able to get on disability the thought of going to work as horrible as I felt may have given me nocturnal panic attacks.

Thank you for the response and information Beth, I've been reading a number of your posts and I'm extremely thankful that this site is available to those with C. Diff. I'll post any new information from my GI after speaking with them.

Hope you are well,

Jill
Last edited by Jill79 on Wed Jul 20, 2016 4:17 pm, edited 1 time in total.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Jill 37/f New to C. Diff

Postby amyc » Mon Jul 18, 2016 5:36 pm

Hi Jill, sorry to hear about your C diff diagnosis. I will try to answer your questions, but first will ask if your doctor would be willing to order the test for your mom so she just pick up the sample cup from the lab and drop it off without having to go to an appointment? She does have D and back pain, so could be described as symptomatic.

1) I had decreased BM on flagyl, but I had frequent, watery D before I started it, so 3 to 4 a day would have been an improvement.
2) if the burning is bothering you, there is nothing wrong with requesting a medication change. The doctor may say your side effects aren't serious enough to warrant it, but there's nothing wrong with asking.
3) yes, definitely
4)yes, definitely
5) no experience with donnatol, and maybe ask your GI if you should continue taking it. Being on donnatol might not be a good idea with C diff.
6) that could be difficult to figure out, unfortunately. The only way to distinguish between post infectious IBS and a C diff relapse is to test. Fortunately the test is easy to do.

I hope your phone consult with your GI goes well, and they will be able to switch you to vancomycin if you ask them and they feel it is appropriate. Hopefully they will also be able to order a test for your mom if you can give them her info over the phone.

C diff is contagious but not outrageously so, but I do wonder if your mom also contacted it while visiting your grandfather at the nursing home and has developed symptoms because diabetes has weakened her immune system. The back pain is a concern since it is occurring in conjunction with D, so I do think she should test. If your BF has no symptoms he probably doesn't have to worry about it, but as another anxious gal, I understand why you want him to do it :).

Best of luck to you!

Jill79
Regular Contributor
Posts: 119
Joined: Mon Jul 18, 2016 10:51 am

Re: Jill 37/f New to C. Diff

Postby Jill79 » Mon Jul 18, 2016 5:44 pm

Hi Amy,

Thank you for the response. Actually my mother never visited my Grandmother (father's mother and Mom and Dad are divorced). She has a different primary doctor and an appointment for Thursday, she asked to pick up a kit but her doctor wants to see her since it's been a while and rightfully so. We have always both had back problems (herniated / bulging discs) but I do share your concern for her for the same reasons.

I'm sorry for all the questions but should I be bleaching after urinating as well or just BMs?

I'm more worried for my mother her due to her age (73 next month) than my b/f but will push for him to get tested just to be safe.

I don't plan on starting the Donnatal again as the abdominal pain isn't so severe that I would jeopardize these two weeks of Flagyl.

Thanks for your kind words and answers to my many questions, it does help to know what I'm experiencing is shared by others even though I would not wish this on anyone.

Best wishes Amy, thanks again!

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Jill 37/f New to C. Diff

Postby amyc » Mon Jul 18, 2016 6:33 pm

Honestly, it's unlikely your mom caught Cdiff from you, but was hoping to kind of sneak one by her doctor so she doesn't have to bother with an appointment. :) but with diabetes maybe it's a good excuse to get her to go in for a checkup. You don't need to bleach the toilet after you pee. I didn't bleach the toilet after the watery D stopped, and shared a hotel bathroom with family members when I was on my first course of flagyl. None of them got sick, and all have taken antibiotics since then. Had I known about spores etc at the time I probably would have freaked out :). To make your life easier you can order bleach wipes on Amazon.com, but it's not necessary. Get some disposable doctor's gloves for when you use bleach so you don't fry your hands.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Jill 37/f New to C. Diff

Postby roy » Mon Jul 18, 2016 7:58 pm

I will make a few comments.
The symptoms you describe might not be caused by c.diff.
You have had a lot of tests and they found you have c.diff in your gut but that does not mean they should just label you as having c.diff as a disease and sending you off with meds.
It's possible to test positive and not need treating, if 100 perfectly healthy people tested around 5 would be positive but not need treating.
Your Mom and boyfriend do NOT need testing, even if they test positive they should not be treated unless they have classic c.diff symptoms.
Treating without symptoms can be harmful.
Testing to prove it's gone is wrong and if you wait for a negative test before going back to work you might never work again!
C.diff is not a disease, it's a natural occurring bacteria that for some is part of their normal gut flora.
It's only a disease if it over grows and causes c.diff colitis symptoms.
Dr's should use the test to confirm a clinical diagnosis that's already been made because of symptoms and NEVER diagnose c.diff as a disease solely on a test result.

Jill79
Regular Contributor
Posts: 119
Joined: Mon Jul 18, 2016 10:51 am

Re: Jill 37/f New to C. Diff

Postby Jill79 » Mon Jul 18, 2016 8:22 pm

Amy,

I can't thank you enough for the reassurance and information. I plan on getting some gloves, my mind hasn't been on my hands or skin other than making sure they were clean the past couple days. :)

Roy,

My father's name is Roy, it's a great name! Thank you for the information and input, I did read that you can be a carrier and that you shouldn't treat without symptoms and it scares me that I may be harming myself by treating, but it did start with WD (maybe not at the usual frequency or duration) but I don't want to think my doctor is steering me wrong at least until I can speak with the GI (hopefully tomorrow) to find out more details.

He should be able to tell me what kind of test was performed, maybe the strain and toxins? Again I'm very new to this so I'm going off of what I could find online so what I'm asking could be wrong or out of context.

I'm not pushing my b/f as much as my mother to get tested because he is not having any symptoms but if he does, he does. Whereas my Mother has had bad bouts of WD on and off (taking Imodium to "fix it") for years, including recently, and due to her age and immune system would feel better if she was tested, especially if the doctor's office is recommending it. I don't think she has it numerous times a day, so I'm not terribly worried that she has it either, but since I tested positive, it may give me some relief if she tested negative. But I understand where you are coming from and I'm taking what you've said into consideration. I thank you.

On a side note, I'm also experiencing a minor eye twitch every once in a while and my ears pop to where I can hear myself breath and talk. I've had the ear thing before but the eye twitch is new. Again my anxiety is making me question everything I feel.

I really do appreciate all the responses, even if it makes me question things more. :)

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: Jill 37/f New to C. Diff

Postby amyc » Mon Jul 18, 2016 8:32 pm

The eye twitch can happen with anxiety too. Try to relax, and I'm sure your GI can answer questions for you when you guys talk tomorrow :).

iamsick
Long Time Contributor
Posts: 1178
Joined: Thu Feb 26, 2015 12:39 pm

Re: Jill 37/f New to C. Diff

Postby iamsick » Mon Jul 18, 2016 8:45 pm

I get the eye twitch when my anxiety is high!!!
Teresa_68

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Jill 37/f New to C. Diff

Postby roy » Mon Jul 18, 2016 8:54 pm

Make a list of all the questions to ask the GI.
Include, should your mom be tested.
If the GI knows c.diff they will say no.
Do make that list though and write down the answers.

getwellsoon
Long Time Contributor
Posts: 3301
Joined: Mon Jul 18, 2011 8:33 am

Re: Jill 37/f New to C. Diff

Postby getwellsoon » Tue Jul 19, 2016 7:15 am

I had the arm,chest , neck flushes with CDiff. I also had a lot of D and nausea, no appetite and heart palps. I was very ill and ran a high fever for a day or two when I first got it. That said, those symptoms could be from the Flagyl. If it were me I would ask to be switched to Vanco, I would tell the Dr. I couldn't tolerate it. It is so much easier to take for most. I hope you can figure all this out but make sure you have CDiff before going on with meds. Every time you take them they deplete the gut flora and you feel sicker and take longer to heal. I was on the med go round for over a year and it was only months after I went off that I started to heal. Good luck and hope you feel better soon.
CAROL

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Jill 37/f New to C. Diff

Postby roy » Tue Jul 19, 2016 9:56 am

Also the GI has not put off the appointment because your contagious!!!!
You are not a danger to anyone.
More likely because you have been given a diagnosis and are already on the correct treatment.
There's nothing else they would do at this time.

Jill79
Regular Contributor
Posts: 119
Joined: Mon Jul 18, 2016 10:51 am

Re: Jill 37/f New to C. Diff

Postby Jill79 » Tue Jul 19, 2016 7:38 pm

Thank you again for all of your replies to my posting.

Amy & Iamsick - I did read that there is a slight chance the eye twitch or muscle twitching in general can be a side effect of the Flagyl, I have had it once or twice in the past in conjunction with sinus and upper respiratory infections but it is the least of my worries at this point in time and I totally agree that it could be due to the anxiety as well.

Roy - I did make a list for my GI however after calling them this afternoon to inquire if they had received my results and when to expect the phone consult I was informed that they would not be calling since I was not seen / diagnosed by their office. It would have been nice for them to call and inform me of that, but my call did lead to them advising me to get a consult with my primary (which in hindsight I should have done anyway) and I was actually seen immediately after I called this afternoon. (The GI office did say that I could make an earlier appointment with a Physician's Assistant if I didn't get enough information from my primary.)

Yes, My PD said Mom didn't necessarily need to be tested, but since she is showing symptoms (abdominal pain, back pain and diarrhea) which may or may not be C. Diff related, as well as the fact that she may be a carrier who transmitted it to me, I still believe it would be in her best interest to keep her appointment and get tested anyway, especially at her age. If all it does is give me peace of mind, it will be worth it in my honest opinion.

I presented my questions to my PD who confirmed:

1. I tested positive for C. Diff toxin A/B through a culture. I have a copy of the results stating the same.
2. The fact that I am having symptoms, albeit mild, also reinforces the C. Diff diagnosis and a false positive result is highly unlikely unless my sample was cross contaminated at the lab.
3. The increased frequency of my BMs the past few days could be the C. Diff and / or the Flagyl helping to clear the infection from my system and I was strongly advised to finish this round of treatment.
4. If my symptoms worsen or I'm unable to continue to tolerate the Flagyl that he would prescribe Vanco but stressed how much more expensive it is. (I have RX insurance, even if it's more $$ I will ask to be switched if I find that I can't tolerate it as well as time goes on.)
5. I should start a probiotic. The GI office suggested Florastor 2 pills 2x daily. My PD recommended Align 1 daily for 30 days, but said either should be sufficient and that I shouldn't have any side effects. (Can anyone weigh in on this, I will be checking the forum for posts regarding probiotics, but thought I would ask anyway while I'm here.)
6. My increased anxiety is psychological and most likely due to not feeling well, missing work, the severity of my illness, etc. etc. (I agree with that, but also wonder if it could be due to less cortisol production from the C. Diff and Flagyl.)
7. I should retest a month from starting the Flagyl.
8. If I have a strong immune system I should be in the 80-90% that recover.

Again, I'm totally new to C. Diff and want to wholeheartedly want to believe that I am following the best course of action at the direction of a doctor who I've never had a chance to doubt in the 17+ years I've been seeing him. I'm sure some of you may have contradictions and maybe feel that he is wrong - and I'm totally open to that. I'm here for support and again welcome additional questions, recommendations and information. I still will be seeing my GI the week after I finish my first round of treatment or sooner with the PA if I have any additional concerns.

getwellsoon - I'm glad to hear I'm not alone with the flushes, nausea, no appetite and I may also experience heart palps but just contribute them to my anxiety. :) As mentioned above I'm going to stick it out with the Flagyl unless I feel I can no longer tolerate it but I do appreciate your advice.

Amy - got some gloves today :)

I feel most of my questions and concerns were answered and quelled, just need some input about Florastor or Align?

Wishing you all the best!

-Jill
Last edited by Jill79 on Tue Jul 19, 2016 8:24 pm, edited 1 time in total.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Jill 37/f New to C. Diff

Postby roy » Tue Jul 19, 2016 8:23 pm

Testing to prove it's gone is not reccomended.
You can test positive for a long while after treatment.
If you want to read the guidelines that Dr's are supposed to follow we can post them here.
ALL say do not test to prove a cure.
Your moms long term symptoms are the same as now.
VERY unlikely to be c.diff or the source of your infection.
If in fact you do have a c.diff infection that needs treatment!
Culture is not done to diagnose c.diff.
If the test says positive for A&B it's the EIA test.
70% accuracy at best.


Return to “Free Form Discussion”



Who is online

Users browsing this forum: No registered users and 17 guests