Anxious, what next?

[Jackie25]

Hi everyone!

First of all I want to express how grateful and blessed I feel to have found this group! It has been a lifesaver to me over the past month. I have read various postings every couple of days but have never posted.

I would first like to briefly tell my personal story: I was perscribed a strong dose of augmentin and amoxicillin for a severe sinus infection around thanksgiving of this year. Mid way through taking this medicine I began having explosive diarrhea multiple times a day, nothing like I have ever experienced. I quickly called the pharmacy and was told this was a common symptom and to continue the medicine and take immodium to lessen the frequency and severity of the diarrhea. Once my 7 days of augmentin were complete I developed severe stomach pains and began the typical M and B with the D. My husband rushed me to the ER were I was told I more than likely had C Diff and would need to do a stool sample but start Flagyl right away (3x a day at 500mg 14 days) I had never heard of C a Diff before but became very scared once I read certain things about it.

The Flagyl was very hard for me to take but I pushed through, once I was off I developed diarrhea 2 days later (no M or B) went straight to the doctor and was put on 7 days of Flagyl again (same dosage) and another stool sample was taken. When the results finally came back positive it was my last day of Flagyl and my doctor prescribed a 14 day round of vancomycin at 125mg 4x a day. I added floraster 2x a day, began drinking kefir, and over the last few days have added ultimate flora for women daily as well. I noticed my stools became more solid then they have been since I was diagnosed (they now have a shape) but are very soft, sometimes break apart when flushing. Sorry if TMI.

I just took my last vancomycin a few hours ago but today experienced more soft and frequent use of the bathroom, I should add that I made the horrible decision to eat Chinese food last night (chicken with veggies in a sauce, fried rice, and a fried spring roll) this might be the reason for the change today I'm not sure though. I'm not sure if this is normal recovery as it's not diarrhea (it is indeed soft but shaped the way it "used to be") I'm just very nervous to see what tomorrow holds without vancomycin :/ are very soft stools that are in a shape normal after c diff? Even if they break apart when flushing? If I do relapse, what would the next best choice/plan regarding medication be? I recently moved away from home with my husband to a new state- he's in the military and gone at the moment so I'm alone. This of course adds to my anxiety that I've had my entire life. Any help or advice would be greatly appreciated.

Again thank everyone on this site so much-reading everyone's stories and posts has eased my mind when it tends to wander to the worst!

[teresajo103]

Well, I am tapering on vanco right now. I have not tried much food outside my safety zone(lol). I went to the doctor yesterday and after the appt. We went to eat at fire's cafeteria. I like that because I can see what I am getting and make wiser choices. I got a fruit salad that had apples and bananas and strawberries. It was the first fresh fruit I have eaten in a while. I was terrified it would cause me problems...I worried until my husband pointed out I was making myself suffer with what I was putting myself thru. I did not react to the fresh fruit.....it was fine. Some of the folks on here told me to stop looking in the potty.....that I will know if it's back. I guess that is true because now I just close the lid and flush and I haven't been stressing so much. I sure hope the vanco works for you. C diff sucks....but we are all getting well together.

[Jackie25]

Teresajo103- Thank you so much for replying! I'm glad you were able to eat fruit, I love when I find out I can handle small amounts of something new! Lol
Did you take a normal round of vancomycin before doing the tamper? Do you fell it's working properly for you so far? C diff does suck that's for sure, I have to step back sometimes and look at the progress I've made when I start to get down about still having it/trying to heal! Thanks for the positivity :)

[teresajo103]

I took flagyl first....back in September. I relapsed after 6 days and had to be hospitalized for 5 days for malnutrition and dehydration. Then I was put on vancomycin for 10 days...500mg 4x a day for 10 days. I was really sick thru that... my gi doctor said it was too high a dose....(My pcp gave me that). I relapsed 14 days after I finished the vanco. Then I was put on dificid for 10 days....relapsed 3 weeks later. I am hopeful with the taper.....but if it doesn't work we will be ready for fmt. My bm's care getting better....but I attribute that to the cultured buttermilk....which I like....some can't handle it. My main issue is I have lost 51 pounds and still losing. I had lost 3 more pounds yesterday. I needed to lose some....but not this way (lol).

[Jackie25]

Oh gosh, you've had a hard time then! I really hope the taper works for you! I've read it has been good for a lot of people, I think if I relapse that will be the next step for me as well. Trying to stay positive but be realistic as well, unfortunately I can see for some it takes awhile to get rid of. But we will both eventually be healed and on a road to recovery I'm sure of it :)

I do wonder what is to be expected when vanco is finished in regards to BM's and what is considered recovery and it is deemed a relapse?

[teresajo103]

Well, I can tell you about the relapses I had.....it started with nausea.....and I felt really yucky. Then...the d from shell kicked in.....followed by and accompanied with horrible abdominal pain and cramps. I went too the er and was given pain meds....and sent home every time. My gi doctor is over 2 hours away.....so I have to depend on my regular doctor and he is not very c diff savy. I will say this.....he is getting better. My bm right now on my 6 th week of vanco...is soft but well formed (finally) and 3x a day. I still have a lot of abdominal pain. Most people have the pain in the morning....not me...mine is always always at night. I have found a nice warm bath will help with the ab pain. And a heating pad is my best friend. I hope you recover easily...and maybe you won't have these problems. I have felt pretty good the past week.....so next week is going to be even better.

[Jackie25]

Thank you for sharing your experience with me! I feel like the past month for me has been a blur and I dont even remember what a normal BM looks like anymore :/ lol one day we will both see it though! I'm glad to hear your are doing well on the taper, maybe this will be what finally knocks it out for you! I agree that with the progress you've made your next week will be so much better! I've read numerous people posting that it definitely takes time for things to get back in order, I will keep you in my prayers for healing and recovery!

[Jackie25]

If anyone else is reading- as mentioned I took my last vancomycin earlier today. Does anyone have any advice in regards to what to expect these next couple of days? I feel like my stomach feels funny already, not painful. Almost a bubbly gas feeling? Is this normal? Sorry if I'm asking a lot of questions, I'm just very anxious.
Thank you

[beth22]

Some people experience firmer stools when they stop vanco because vanco gives some looser stools. I think tapering is easier on the system. When you stop cold turkey sometimes you can get looser stools without it being a relapse. Give your system a few days or a week to adjust. If you relapse, you will know it and get watery D and frequency. Hopefully, this did the trick for you. You might want to eat a bland diet for a few days.

[Jackie25]

Thank you beth22 for the advice. I have read that vanco causes loose stools in some. I guess only time will tell, hopefully things will firm up the next few days. If not at least I know what is going on and can get back on vancomycin. I'm guessing a taper would be next in the line of action should I relapse? Maybe this will be all I need, that would be a heaven send!

[getwellsoon]

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, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new 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 or Vancocin. 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, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. 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 again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

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. 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 can be.

Again, welcome. Remember, the odds are in your favor.


Just wanted to give you the official welcome. Vanco always gave me soft stools and for months afterwards also. I wouldn't worry about soft. My Dr. said soft is not D. If you have constant watery D then its time to take action. Some do get C after CDiff or with it but that is usually not the norm. Thats the trouble, there is no norm for Cdiff symptoms. Hopefully this will do it for you and you will slowly heal. It will take time, your gut can take many months to get back to normal after this major infection. Hang in there and let us know how you do.

[Jackie25]

Thanks for the insight. I didn't sleep good last night, woke up around 4am and had mushy stool. Felt a little nauseous so laid on the couch only to get up urgently to use the bathroom and it was pretty watery. I think I'm going to call the dr this morning and see if I can get in this morning. I don't want to risk letting any time go by without meds and the diarrhea become more frequent. I'm home alone for the next few days and can't risk being dehydrated. I'm very anxious and nervous :/

[Lisa33]

Hi Jackie - sorry you are going through this horrific illness. I just wanted to share my experience. I was diagnosed with c diff in September, took flagyl and relapsed at the end of October. I couldn't tolerate the Flagyl and was switched to 14 days of Vanco. I had loose, thin stools for a long time after. I thought I was relapsing several times, but the weird thing is that I would have the urgency to go and the symptoms mostly in the early morning hours, and then would be fine the rest of the day. I would literally wake up having to go anywhere between 430-6am every day. I would go several times with yellow, loose, thin stools. I was convinced it was back, but tested negative on 3 stool samples. This was my norm until maybe a month ago, when I added Florastor to my probiotic intake and started to eat gluten free as recommended by my dr. I finally have had firmer, bulkier stools, but they are still not normal as pre-c diff. And I still have the loose mucousy stools once to twice a week. I seem to have post infectious IBS or collitis issues from the c diff. It's been a very slow recovery process for me, but that seems to be the norm among many on this site. I am now 9 weeks post Vanco and like I said, still not "normal". But there has been significant improvement for sure. If you are experiencing D throughout the day with the urgency to go and other symptoms, definitely reach out to the dr. But, if you retest, it should be 14 days post meds or you can get a false result.

I hope you feel better!
Lisa

[Jackie25]

Hi Lisa33! Thank you for responding :) I would have the same thing while on vancomycin, would have the urgency only in the morning and by noon I would not need to go again and they were soft but well formed in the proper "shape".
Going off meds last night certainly was not the thing for me to do however. I did end up driving myself to the ER this morning where I was given fluids and monitored for a few hours. The doctor questioned why I was only given a prescription for 14 days of vanco and not advised to taper/pulse following that. I have a follow up with my regular dr on Friday for the tests he took today (urine sample, blood tests, and also another stool sample) he also gave me a referral to a GI specialist that I have to call and confirm sometime tomorrow. Overall, He said that the prescription I was given seemed Ill advised and gave me a prescription for the following:
4x a day for 7 days
2x a day for 7 days
1x a day for 7 days
1 every other day for 7 days
1 every 3rd day for 2 weeks
* all at 125mg*

Has anyone seen this type of taper/pulse before? If so does it seem effective? I know I've only been going through this about a month and so many have suffered much longer before being cured, it just totally wipes me out and it's hard not to feel down sometimes :/ also, if angone has seen a specialist what is the exact purpose of doing so? Will they be able to help me more than a regular doctor? Thanks for everyone's feedback, I really appreciate it more than yall know!

[roy]

Hmm Chinese rice!
Double Hmm Chinese chicken!!
The most gut bug infested food available!
Left festering in big bowls and warmed up days later for you to eat!
If my symptoms were subsiding after a day I might not start another round of meds right away.
That food won't cause a relapse But is well known to cause D