On Vanco Taper, not sure if it's working

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mnm67
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On Vanco Taper, not sure if it's working

Postby mnm67 » Fri Jun 08, 2018 2:01 am

Hello,

I am a first time poster. Female, 25 years old. I caught C diff about 2 months ago three weeks after I had finished a round of the antibiotic clindamycin. Why I was taking clindamycin is a long story, but essentially I had recurring BV that wouldn't go away with flagyl, and clindamycin was the next thing they give you if flagyl doesn't work. No one warned me it could cause C diff. So now I apparently have 2 recurring infection issues. The BV did go away mostly from the clindamycin, but I'm terrified of it coming back because I don't know how the doctor will treat it since I won't let them give me clindamycin again.

After finding out that I had C diff for the first time, I took one round of Vanco for 10 days. Everything seemed mostly back to normal. Three weeks later, the same symptoms of C diff came back again. They didn't seem quite as bad, but were concerning enough for me to contact my doctor immediately (by the way I'm a grad student and my relapse happened two days before my thesis defense-- a very close call). I got prescribed a 6 week vanco taper. All seemed relatively well for the first week or so, not completely normal, but manageable. Then during the second week of the taper, when I was still taking the full dose of 4 times a day, I started having frequent BMs that are still formed, so not diarrhea, but not exactly pleasant either. I've been dealing with that for a week now, and luckily all my grad school classes and teaching are over so I am not missing class or work while I wait and see if things improve. I contacted my doctor, who referred me to a gastroenterologist, and I've tried calling them and making an appointment, but so far they haven't gotten back to me. So I've been very frustrated. I know it's possible that this these symptoms are due to the after effects of CDI and not CDI itself. If so, I am afraid that I have post CDI IBS. I was already lactose intolerant before this all started, so I can easily cut out lactose in general (except for yogurt which I've still been eating because of the probiotics). Today I started cutting out gluten too, but haven't noticed any improvement so far. I have been taking probiotics this whole time and drinking lots of kefir drinks, but none of this seems to be helping.

I feel extremely stressed and worried about how this infection and its aftermath will affect my future. I am supposed to go on a trip abroad with my family and boyfriend in July, and unless I see significant improvement between now and then I don't think I will be able to go. I also am supposed to start a student teaching program this fall, and I'm really worried that having these symptoms will make it difficult, if not impossible, to work as a student teacher and attend classes. I should be celebrating right now. I just finished my masters degree. But all I feel is pretty depressed and anxious. Oh and to top things off, I'm going to be kicked off my parent's health insurance when I turn 26 this summer. However, my parents are very generous people and will probably continue to help me fund my healthcare, since I clearly need access to good healthcare right now. I just feel frustrated with how much this infection has interfered with my life already and I wonder how much it will interfere with my future. My wonderful boyfriend has been so supportive of me this whole time. We started dating over a year ago, and out of the 15 months we've been dating, I've only been healthy for like 2 or 3. I feel really grateful for all the support I have from him and from my family, but I can't help but feel that I'm starting to be a burden on them. Anyway, thanks for listening to my venting.

Ygy
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Re: On Vanco Taper, not sure if it's working

Postby Ygy » Sun Jun 10, 2018 2:00 pm

Mnm,

I'm so sorry you're going through this:(. I know how it feels to be young and have this awful disease. I first had it 5 years ago (I was 26 years old and working as an RN) and thankfully one round of vanco cleared me up. I had no after effects and resumed my previous diet. Life was good.

However 9 months ago I got a reinfection after Macrobid and relapsed. Dificid ended up working for me. I was sick for almost 3 months. Now I'm 2 weeks postpartum and I'm positive for cdiff again after the IV vanco ( which is supposed to be relatively low offender) for my csection. It's sucks.

Try not to stress too much, you are only on the 2nd week of the taper. Give it some time to work but also let your MD know if you're not getting back to somewhat regular around week 5 of the taper. That is what I did bc I was not improving as much on the taper and my ID gave me Dificid and I mostly returned to normal after the 2nd day of the medication.

Also expect some off days after the taper is over. I am lucky and didn't have post infectious IBS but there are a lot of foods which I can't tolerate. I stay away from dairy, fried foods, junk foods and anything too high in fiber. I followed the Low Fodmap diet at first and figured out what worked for me. And I mostly eat all organic lean protein, eggs, most fruit, rice, bread, pasta and cooked vegetables. I use almond milk for cereal and I almost never eat at restaurants or anything which I haven't prepared.

I know most people on this site follow the "3 day rule" after meds are over. Which is if you're having episodes of D more than 3x a day for 3 days then call the md for a test. I'm a diffrent school of thought though bc my body is diffrent. If a food disagrees with me then I will only get D once or twice. So this time around I called after the 1st day of D, and I'm glad I did bc it continued and now I can get treated quicker.

Praying for you! Don't forget to celebrate your accomplishments! This is hopefully a short chapter in life. I'm hoping for the best outcomes and quick recovery for both of us:)

Lisa33
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Re: On Vanco Taper, not sure if it's working

Postby Lisa33 » Mon Jun 11, 2018 1:27 pm

Welcome to the site - please read the first forum for all new users on rules of posting, standard intro, etc.

So sorry you are dealing with c-diff. You definitely should get in to see a GI who is well versed with c-diff. Sometimes if BMs start to go south on the taper, doctors will increase the dosage again for a while before dropping down. However, you should be under a GI's care through this ordeal. However, if you are not experiencing the copious watery D, it's probably normal recovery on the meds. Most of us experienced weird BMs through our time on meds and for in some cases several months after. Many do not go back to how things were pre-c diff, but have a new normal. As you said, you can also have post infectious IBS. I had that for quite some time after finishing meds. Recovery can be a roller coaster.

Clindamycin is one of the worst offenders. Many on this site have gotten c-diff after taking it. It wipes out your good gut bacteria leaving you open to contracting c-diff. I am one that used to suffer from recurring yeast and BV infections. Taking probiotics has pretty much kept them away for years now. I feel that Florastor has really helped me. Acidophilus is another probiotic recommended by gynecologists to keep bacteria in check as well. PurFem is another OTC probiotic that has been shared by one of our moderators that has also been beneficial in keeping things in balance down there. Overall, I truly feel that probiotics have worked wonders with keeping all bacteria in balance everywhere. Also, just to add, I was diagnosed with a BV infection last year, which I got when I tried to go off probiotics. I was prescribed the Flagyl cream, but I actually just went back on the probiotics and toughed it out, and it winded up going away on its own. I don't recommend that everybody does that, but in my experience, it does go away on its own untreated sometimes. Obviously, if I didn't see any improvement within 1-2 weeks or if it got worse, I would have had to use the medicine.

Hang in there and feel better!

Lisa

mnm67
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Re: On Vanco Taper, not sure if it's working

Postby mnm67 » Wed Jun 13, 2018 3:04 am

Thank you for your kind words. I've been trying out different probiotics to see if they made a difference. So far nothing has really worked. I'm now on week 4 of the taper, taking Vanco just once a day, and it just seems to be getting worse. I haven't had D, but loose BMs up to 8 times a day. The first available appointment with a GI I could get is in over a month from now, and I'm really frustrated that they are not able to fit me in earlier. I guess since I'm on the taper they don't think I'm an urgent enough case to see me on short notice.

Lisa33
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Re: On Vanco Taper, not sure if it's working

Postby Lisa33 » Wed Jun 13, 2018 10:11 am

Can you talk to the prescribing doctor to voice your concerns. Maybe he can up the dosing? It is so frustrating that when you are sick and in need of medical help, you have to wait. Maybe your PCP can get you in quicker to the GI? So sorry for your frustrations.

mnm67
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Re: On Vanco Taper, not sure if it's working

Postby mnm67 » Fri Jun 15, 2018 1:18 am

I did talk to my prescribing doctor and she got me back on Vanco 4 times a day for the moment. I luckily was able to get an earlier appointment with a GI next week. I'm feeling a bit better than before now that I'm on Vanco 4 times a day, but not entirely better. Even worse, my boyfriend started experiencing D today and I am really worried I have infected him though I have tried to take precautions. He has never taken antibiotics in his life though, so I'm hoping he'll only have a mild case and fight it off quickly. I'm just feeling very anxious still. I feel guilty that I may have infected my boyfriend who has been taking care of me this whole time, and I'm praying that he won't get as sick as I am.

mnm67
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Re: On Vanco Taper, not sure if it's working

Postby mnm67 » Fri Jun 22, 2018 1:56 am

Just wanted to post a quick update:

Amazingly, my doctors actually got me an appointment with a GI this week, and the GI was able to perform an FMT on me today, only 3 days after my initial appointment. For once the healthcare system did something right!

I am recovering from the procedure, and I'm really hoping it "takes."

My boyfriend, who I'm still afraid I gave C diff too, has been slowly recovering on his own without antibiotics. He has had a mild case of D since last week and has wanted to see if it will go away on its own. It should because he's never taken antibiotics ever, so I'm still not even sure how he caught it from me in the first place.

Hopefully I will have more good news to share soon. If you're not responding to the Vanco taper, I highly recommend bugging your doctors as much as possible. In my case, it worked and they listened to me and helped me move on to the next treatment.

-MNM

beth22
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Re: On Vanco Taper, not sure if it's working

Postby beth22 » Sat Jun 23, 2018 1:43 am

Thanks for posting. Hopefully, the FMT will be the end of c diff for you!

mnm67
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Re: On Vanco Taper, not sure if it's working

Postby mnm67 » Mon Jul 02, 2018 1:20 pm

I'm happy to report that my FMT seems to have cleared my system of C diff. Just like everyone else on this site, I didn't know what to expect post-FMT and at first I definitely did not feel 100% normal. I had an off day about 5 days after the procedure during which I thought the symptoms of C diff were returning, panicked, and had the doctor order me more stool tests. By the time the tests came back, I was already feeling much improved. The test came back negative for C diff, so now I'm crossing my fingers that I will stay C diff free for a long time now. On an unrelated note, I ended up not giving C diff to my boyfriend. It just so happened he developed diverticulitis around the same time I had recurrent C diff. He's getting treated for that now, but man it has been a rotten past couple of months for both of us health-wise. I just hope our health troubles are finally over for a while.

Whyme111
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Re: On Vanco Taper, not sure if it's working

Postby Whyme111 » Fri Jul 13, 2018 8:33 pm

Hi MNM,
How are you feeling? I'm on a Vanco pulse right now and today I got nervous, thinking the C Diff is creeping back in. I understand ups n downs but this is so hard to predict. I'm so tired of this. I just want to feel "good" again and I want my energy and drive back. I hope you're continuing to feel well!
-RC

Ril
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Re: On Vanco Taper, not sure if it's working

Postby Ril » Fri Jul 27, 2018 9:58 pm

It would be unusual for c diff to have spread to your boyfriend. It was just an unfortunate coincidence that he developed another GI problem at the same time you were battling c diff.

Whyme, c diff is an extremely anxiety provoking disease. We all worry that we are developing symptoms again and that it is coming back and unfortunately that anxiety itself can bring d because that’s the way the GI tract works. Try to keep calm...
You have support here.
Rita


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