daughters wedding this weekend/post cdiff issues

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zinnia1
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daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Fri May 22, 2015 11:51 pm

Hi all- looking for "quick emergency fixes.."
Testes positive for c diff April 30 after 3 rounds of zithro for an "ear infection" that turned out to be a hidden abscessed tooth.. so then penicillin. Long few months. No knowing I even had c diff (took florastor thru out various antibiotics..) I ate a protein bar w/a lot of sugar alcohol content, and was hit hard w/ rapid bowel movement. I thought this was unusual, thou read it can certainly happen, but thought about the antibiotics too. So ended up w.a positive c diff test despite actually feeling better… 10 days on vanco, and felt improved. Stools not perfect, but have had no fiber for a long time.
Re-tested at end of course and result was negative. Then got slightly more cavalier w.diet (indian food, thai noodles ) and wham- loose fast stools multiple times a day. Re-teted and have not received results back. GI does not really suspect c diff- more inclined to post infectious diarrhea. However, I am wiped out and back to chicken, rice, bananas and gatorade. My daughter is getting married this weekend ( in a rural environment…) and I am panicked, in addition to being so weakened. My GI said I could restart vanco, despite no test rests yet, just so I feel like I am doing something… my primary care suggested pepto also instead of imodium. I am hoping two days of vanco will kick in - and tat I can get my electrolytes up-- but am in need of emergency advice to get me thru weekend w/no issues. Florostor seems to be to much for me right now, even culturelle does, so am just laying off. Next week I can deal w/all that. Now I just need to feel hydrated, have no diarrhea and feel stronger. It may just be IBS, but man…
Any thoughts on Petpto, gatorade etc and how long before vanco makes a dent?

seekingcure
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Re: daughters wedding this weekend/post cdiff issues

Postby seekingcure » Sat May 23, 2015 1:36 am

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. (End of letter.)

So sorry you are having issues when you should be enjoying special time with your daughter. If you do have c-diff again, the Vanco should start to kick in within three or four days. At least it did for me just recently when I tested positive again. If you are still having a lot of watery diarrhea and feel like you are dehydrated, you might need to go to the ER. At least touch base with your doctor about the dehydration and see if he thinks it's okay to just use the gatorade. Also, I would try the Pepto since the doctor suggested it. It might be enough to help get you through the wedding. Sticking to the bland diet should help as well. Hopefully it will turn out to just be too much spicy food too soon. It can take me several days to get over an IBS flare if I eat something I shouldn't. I hope things calm down some so you can enjoy the wedding. Keep us posted.
Bea

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Sat May 23, 2015 11:39 am

Thanks B - no time to go to ER.. can you imagine the paperwork..?!? If I could hook up to a IV I would! But drinking water and gatorade and vitamin water and chamomile tea…. and toast… Jus took 6th vanco…Immodium the other day gave me such a gut ache, but I guess I will take that proactively tomorrow before wedding..

Dobies#1
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Re: daughters wedding this weekend/post cdiff issues

Postby Dobies#1 » Sat May 23, 2015 12:19 pm

Just wanted to say good luck with everything!

Lisa33
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Re: daughters wedding this weekend/post cdiff issues

Postby Lisa33 » Sat May 23, 2015 12:59 pm

Ugh - it's so hard dealing with this during such a joyous time! I agree with Dobies - I would question the dr on the Imodium. Also, I know you already started the Vanco, but after I finished Vanco for my first relapse, I was sure the c-diff was back. I wasn't feeling awful, but the D was back. It wasn't as frequent as the previous 2 times with c-diff though. I submitted a stool test and the dr called in a script for Vanco. I knew from this board that it could also be post-infectious IBS, and I followed the 3 day rule. See CDI Info - IBS and the 3 day rule on the Board Index. I held off on starting the vanco - my choice. My D got better in day 3, and my tests came back negative. I'm glad that I held off because Vanco and other treatments take a toll on your body as well. Healing and recovery really start after you finish treatment. That is when you start to restore good flora in your gutt. My dr told me that once you commit to the Vanco, you have to finish the cycle. I am not sure if all drs believe that, but mine did. She said that she was glad I never started the Vanco. The 3 day rule has helped me numerous times, as I still havs IBS issues and I'm about 6 months out now. Unfortunately, when we are feeling good, we think our guts can handle any diet. But it seems that for many of us, after fighting such a horrible infection, we can't tolerate foods that we used to. I would try to eat more bland, and introduce new foods slowly. You will figure out what diet works for you with time.

Hopefully, you will feel better and have manageable trips to the bathroom so that you can enjoy your daughter's wedding and not have to worry about this. Sometimes when we are busy and have our minds focused on other things, the symptoms of illness get better. The mind plays a big part with gut issues as well.

Congratulations to you and your family!
Lisa

beth22
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Re: daughters wedding this weekend/post cdiff issues

Postby beth22 » Sun May 24, 2015 2:11 am

Pepto used to work for me. I would try it so that you can get through the wedding. Also, Pedialyte might be better than Gatorade.

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Mon May 25, 2015 10:48 pm

Oh my, thank-you all for such thoughtful answers. I was in a true panic and wedding was in a rural outdoor lovely area… yikes. I did re-start the vanco before waiting for results (the test she gives me takes a bit longer..) The wedding and Memorial day was just too much for me to tough it out thru. I was completely wiped out for Saturday Rehearsal dinner- the diarrhea, lack of food, and then I think the pepto made me slightly light-headed… I did switch to pedialyte and kept super hydrated. Things calmed and yesterday, wedding day, I commenced w/bananas and pb and j and then had chicken and potatoes at dinner. I did take one ammonium mid day preventively and as a i got more butterflies closer to the ceremony I took another- more for psychological benefit then anything else! All went beautifully and as was mentioned distraction helped, but of course what if it hadn't?!
All your info about post infectious IBS is so helpful to know. I have dealt w/IBS in past and also had my gallbladder out a few years ago and find that some meals (particularly "on the road' food) can really cause sudden distress. I had thought I was past this phase until this latest upset! Hopefully I will now be able to heal thru the summer. I don't know why my doc's rules will be regarding vanco if the test is negative, but I do know it probably is effecting my gut flora in a negative way as well. I had passed the three days before, so I just don't know.
Does anyone thing adding fiber like citracel or something would be a good or a bad move?

seekingcure
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Re: daughters wedding this weekend/post cdiff issues

Postby seekingcure » Mon May 25, 2015 11:48 pm

I am so glad you were able to get through the wedding and, hopefully, enjoy it. I would think the doctor would want you to finish the course of Vanco since you have already started it, especially if it seems to be helping, but don't know for sure.

I did add Citrucel fiber but it was towards the end of a long taper when I was down to one dose of Vanco every other day. I was having the "pencil" stools at the time. It did seem to bulk up the stool. If you want to try it, I would definitely check with the doctor first. I don't know if you have to space it a certain length of time from the Vanco to keep it from interfering or not.

If you are not taking probiotics, you might consider adding some to help rebuild your flora. S. boulardii is the one most often recommended for people with c-diff. It is a beneficial yeast so can be taken without regard for the timing of the Vanco. If you also add any bacterial probiotics, try to space those as far out from the Vanco as possible so more of it will be able to survive. There is a good article under "media reports" that talks about the benefits of kefir in preventing relapses of c-diff. That's another option as well to get back some good bacteria.

Let us know when you get the results.
Bea

august14
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Re: daughters wedding this weekend/post cdiff issues

Postby august14 » Tue May 26, 2015 4:24 pm

Personally I have to eat that sort of diet even now, a couple months out. Well, maybe only one month out depending on if that last one was a true relapse (I was weaning vanco and they just upped my dosage, didn't even test, for various reasons.) I have to be very careful about what I eat for several months after c diff. The first time I had it I was treated and it took about five-six months to be almost normal (but then I got it again due to antibiotics.) I wouldn't add fiber; in fact my GI advises I eat very little fiber until my GI tract recovers. I have to be very very careful every single day... sadly it sounds like you may be in the same boat as me. In the end it's all seeing what works for you. There seems to be a wide range of normal with PI-IBS and just the recovery after c diff in general. Good luck!

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Wed May 27, 2015 10:38 am

from what i can see on my doctors website the test came back negative, but an email from her says to continue the vanco course- I have for 5 days and I have 10 days left…. ok…..

beth22
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Re: daughters wedding this weekend/post cdiff issues

Postby beth22 » Wed May 27, 2015 10:53 am

I would call your doctor and ask for an explanation and ask why you need to continue with the vanco. With me, the more vanco I took, the more relapses I had, so less was better for me. But there may be a good reason in your case.

zinnia1
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Re: daughters wedding this weekend/post cdiff issues

Postby zinnia1 » Wed May 27, 2015 1:54 pm

Beth- I am not sure why she is having me do full course- to knock out every possible spore? I hope to begin to eat more normally while on vanco and see what happens. I am still unclear as to whether I am supposed to look completely normal….

seekingcure
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Re: daughters wedding this weekend/post cdiff issues

Postby seekingcure » Wed May 27, 2015 4:22 pm

I would want an explanation too as to why the doctor wants you to continue the course of Vanco since you tested negative. May have something to do with creating resistant bacteria. Or maybe she thinks the test was wrong based on your symptoms and that's why. Are you on 4 doses a day the entire time or doing some sort of taper or pulse?
Bea

ppp67
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Re: daughters wedding this weekend/post cdiff issues

Postby ppp67 » Wed May 27, 2015 5:41 pm

After my first CDIFF relapse (treated with 15 days of vanco), I decided to risk it and had spicy Thai food.
I was feeling good. It was 20 days since my last VANCO pill.
But after eating Thai, the next day I was sure CDIFF was coming back.
It hurt, but no D. I rushed to emergency, saw a doctor and gave a sample.
It was 100% M + fresh Blood streak. That was scary.

Next two days, I had dark D, not 10 times a day, but still worrisome.
Then the results came in -- negative! A pleasant surprise.
And I started feeling better again but it took about 5 days since I ate the spicy food.

Maybe it's ok to eat spicy but you may not want to risk it too soon after active CDIFF.
I cannot be sure it was the spicy food but thinking back it seemed to be the problem.

justme
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Re: daughters wedding this weekend/post cdiff issues

Postby justme » Wed May 27, 2015 6:05 pm

Zinnia:
The following are just my suggestions based on my own experience with the aftermath of C. Diff and the long recovery I endured.
1. Avoid spicy food, dairy, sweets, coffee (too acidic), and alcohol.
2. Take probiotics in any form available - capsule, yogurt, kefir, etc.
3. Eat or drink prebiotics (feeds your good bacteria) like psylllium fiber (Metamucil), oatmeal, chicory root extract (some fiber bars). These will bulk up your stool.
4. If your test is negative, ask the doctor why you should continue taking the vanco. Taking the antibiotics to eradicate the C. Diff toxins can also be hard on the colon.
Everyone has given you good advice. Congratulations on your daughter's marriage.
Aloha,
Anne


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