At my wits End!

[momof327]

Hello everyone! Sorry for the repost but I think I accidentally started on the wrong board. I'm new to posting (first time) but have been reading the boards and subjects quite extensively. When I read all the posts, I don't feel so alone in this battle. I'm 54 years young and am at my wits ends with this!
I've been disabled since the year 2000 after fracturing my back while attending the Police Academy. Even after surgery my health has declined and like dominoes it's been battle after battle with new health issues constantly coming my way. This cdiff however has really gotten the worst of me!
I had a tooth abscess back in November which landed me in the ER. (My face was swollen and the abscess was angry) The hospital gave me IV antibiotics and sent me home with a script for Clindamycin 150 mg x2 every six hours. I took it religiously and the infection was cleared up. It did however leave me with cdiff. At first I thought my body was just adjusting from the antibiotic (knowing many give adverse stomach issues) but after more than a month of D, I was given a heads up about the possibility of cdiff. I honestly in my wildest dreams had no idea an antibiotic could hurt someone like this. I'm still mystified why the doctors who prescribe them don't warn people of the possible conditions you can get using them! I was tested positive and immediately put on Vancomycin 500 mg x 4 x a day. That was mid January. After finishing and not getting better I stayed on the Vanco for 3 more rounds. As soon as they tried to taper me down, the D came back full force. Tested again positive. Once again I went back to 500 mg x 4 x a day. Now once again they started to taper me down, 1 250 mg x 4 day.
My question is how do you know if your getting better. Is it a wait and see day by day? I've only started tapering for 5 days and my stools although not D are not formed. Do I wait or go back up. Seems to me that most Dr's are just not very well versed in cdiff. I have also tried taking Florastor but couldn't tolerate it. I'm taking Align now but not sure the expense is worth it to continue. I have lost 22 lbs since this started and my appetite is not good. Kinda have to force myself to eat most days. Still doing the taper taking 250 Vanco x 4 a day. Any help would be welcome. I'd also like to know how contagious it really is as I've been afraid to see anyone since my diagnosis. My son lives with me but since he has IBS we can't be sure if he has it. Getting kinda stir crazy here! Thanks for all you do and for how you so thoughtfully help others with the same condition. Blessings to all. Good thoughts & prayers always.

[Bobbie]

I deleted your other post for clarity.

Welcome to the site. Read the first forum "Please Read Before You Post." It contains our welcome letter, info about C diff you should know, rules of the site,and info about testing.

You have had quite an ordeal. Clindamycin was the first antibiotic implicated in c diff - it can be nasty stuff.

Some on this site - including several moderators - were helped by the tapering/pulsing method in CDI. viewtopic.php?f=4&t=659#p4770. Others were helped by Dificid - which can be pricey but up is supposed to kill fewer of the good bacteria. There is aid in getting Dificid if you qualify. The FMT has a high cure rate.

Most people do better with a GI or an ID because, frankly, and as you said,many docs know little about c diff. See the Doctors forum for docs in your area. Some were recommended by our posters.

C diff can be contagious if you have active symptoms. The best prevention is though hand washing with soap and water. Wash your clothes separarely from your son's and wash all towels in hot water and bleach. (After ruining many sets of towels I finally go smart and bought white towels.) Use a bleach combo (l part bleach to 9 papers water). You also buy special bleach wipes on Amazon and some stores. Do a search on bleach wipes on the site for more info.

Keep us posted on how you are doing. Best of luck. C diff can be a terrible disease but it is curable, and you are not alone. Count on us for support.

[AllisS]

Hi momof327. A moderator will be along soon to post our welcome letter, and I expect others can give some useful input about your symptoms and the Vanco taper based on their own experience. Meanwhile I will try and answer your question about contagion. C. diff is transmitted solely through the oral-to-fecal route and is really not that easy to pass on to others, though people taking antibiotics or those who are very elderly and/or immunocompromised are more vulnerable. Your son is unlikely to contract it from you. The best measure against transmission is to follow meticulous hand hygiene: thorough washing with soap and water (alcohol-based hand gels do NOT kill C. diff), especially after bathroom use and in the kitchen.

I and many other posters on this site have used Clorox Germicidal Bleach Wipes, available only online (e.g., from Amazon); you can't find them in pharmacies or retail stores. Or you can make a solution of about one part bleach to nine parts water. Whichever you might use, let the bleach dry for at least ten minutes before you wipe down surfaces. Use the wipes/solution on door and cabinet knobs, toilet and faucet handles, countertops, fridge handle, TV remote, etc. Consider using disposable paper towels instead of hand towels until your symptoms have resolved.

Clindamycin is THE top-offending antibiotic that causes C. diff; it should be prescribed much more sparingly by doctors, e.g., only in cases where there's absolutely no other viable option. My own C. diff illness was triggered by clindamycin. I hope you will submit an Adverse Event form to FDA; see the link to its website below my name on this post.

Best wishes for recovery,

Allison

[GoGoGirl]

"I'm still mystified why the doctors who prescribe them don't warn people of the possible conditions you can get using them! "

INDEED!!! They over-use anti-biotics!

If you've been reading, you might've seen answers to my posts that stress that when we are in recovery, tool can be "all over the place" in terms on texture and look. As long as it is not watery seems be the url elf thumb, but I'm new to this and just learning.

GREAT, helpful people here!

[NanciT]

Momof327
As you complete your Vanco taper, you need to give things a few weeks to settle down, some do not test unless your have diarrhea 3x/3days. Many of us get Post IBS after completing treatment and symptoms can seem like CDIFF has returned but it is a recovery process, it takes time for the guy to heal. As Bobbie mentioned, please make sure to see either a GI or an ID doctor.
As far as eating, I also had no appetite and stuck to a bland diet throughout treatment. If Allign is working well for you...great. Just make sure to time it and not take it with the Vanco. I have continued with the probiotic, I take VSL#3.
My best advice would be to see a GI , after Vacno see how it goes and hopefully you will notice you are feeling better and recovering. It can take some time.
NanciT

[momof327]

Thank you Allison, I am fanatical about washing and have looked into the Clorox Germicidal wipes and found out today they carry them at Walmart now. At $14 for 70 sheets I was a bit put off by the price but will probably bite the bullet and buy them anyway. My dad is 81 and he is the one I most fear passing it on to. I feel so fortunate to still have him in my life and he lives close by. I've missed him sorely but I was told there are no guarantee's he won't get it, so I haven't seen him since being diagnosed. One of my best friends has cancer and is undergoing chemo etc. but as much as I want to be there for her, I'm terrified to give this horrible cdiff to her as well.
I have read Clindamycin is a top offender, just wish someone would have given me a heads up about cdiff so maybe an alternative could have been used. As for reporting it, I did as soon as I started reading this forum.
Thank you for your well wishes and advice. I've never been on a forum before and this one has already given so much information. I'm not quite sure of all the lingo yet with everyone using so many abbreviations but I guess I'll catch on. lol Sometimes when I read others stories it has me crying just knowing what everyone is dealing with. Tough stuff this cdiff is!
I hope you have already recovered from your bout with this. I wouldn't wish this on anyone! BTW, Does one ever really get over this or will it always again be a possibility once contracted? Just wondering....Take care ;)"

[momof327]

Gogogirl,
I agree, way too much over prescribing of antibiotics! I tell anyone who'll listen now of the possible harm that may come from using them. They can save your life but now I caution people to always make sure its a bacterial infection they are treating and not viral. I'm sure there are exceptions as this are with many things but as for me, I won't ever again be persuaded so easy to use them unless my doctor feels they are absolutely essential to my recovery!
I'm new at this too but the more I read, the more I learn. One thing for sure is that you have to be your own best advocate. Learning all we can is essential to our recovery.
Positive thoughts and prayers your way. :)"

[momof327]

Hi Bobbie and thank you for deleting the other post. Sorry about that!
Thank you for the welcome. It's comforting to know I'm not alone.
I've been using my primary doctor through this so far (internist) and he's been in constant telephone contact with the one and only infectious disease specialist in my town. Unfortunately she's not taking on any new patients so for now that's the route I'm taking. If after the tapering I continue to relapse I will have to look at either going to my gastro doctor or traveling out of town to see a different ID specialist. Fingers crossed this tapering works! Because of my other disabilities traveling more than 20 minutes or so creates other issues with my health and tolerable pain levels.
Thanks again for being here. I hope everyone here knows what a blessing they truly are in just sharing their experiences with cdiff. :)"

[momof327]

NanciT,
Thank you. I'll take your advice and just stick to the bland diet (brat) for the time being. I am taking the Align 2 hours after one of my doses. I hope that it's sufficient?
Could you tell me what VSL#3 is? I've seen it mentioned but I haven't heard of it. Also if you don't mind, how long is best to wait after finishing the taper to get tested again?
Thank you for all your help! I am just so grateful to have stumbled across you while trying to research the cdiff.
:)"

[NanciT]

There needs to be at least 2 weeks post treatment to be testing but some will say do not test at all unless symptoms return which I would agree with. It's better to finish your taper and start moving forward, there will be off days and as you will read on here symptoms can be all over the place while recovering. This site is a wealth of information and you can look under CDI and find so much there, take a look.
VSL#3 is 112.5 billion live lactic acid bacteria/capsule. I buy mine at Costco , they carry at the pharmacy but it does not require an RX, it is refrigerated. It is one of the few probiotics I can take , I started with 2/day while I had CDIFF and have now gone down to one which I plan to continue. It is labeled "a medical food for management of IBS" which I believe it does help. I have had 3 GI's and they all recommended this one, it works for me. There are several people take, which ever one works for you.

[Nancy1]

I lost 27 pounds to cdiff. Primadophilus Reuteri helped me get my appetite back, so I could stop losing weight. It was the only probiotic I took that I could say for sure made a difference. Good luck.

[Dukiemom]

I am 3 months out after four relapses this coming week. Vanco and Vanco taper never did it for me, but Dificid did and also I think VSL#3 and kefir supported the effort. I take 1 VSL#3 daily and will for the foreseeable future. I could only tolerate very bland, easily digested foods, and although I am starting to add a few things back in I experience alot of discomfort. I do think I am on the road to recovery and pray that you will soon be too.

[momof327]

Nancy1 & Dukiemom,

I so appreciate the information that helped you. Nancy, where do you find that particular probiotic? Do they carry them online somewhere? I'm using Align right now. Tried Florastor but I couldn't tolerate it. Just began the Align so not sure how I'll do with it either. I'm only taking one a day. Not sure how many are recommended to take or work up to because again, I'm not sure how I'll tolerate it yet.

Duckiemom, Dificid seems like a possible next step if this Vanco taper is unsuccessful. Praying it will help but good to know other options that others have had good results using.

Thank you both for taking the time to reply. The people on this support group are amazing! Thank you.

[Nancy1]

I ordered it online, but at this point (many years later) I'm darned if I can remember the company. It wasn't hard to find, though. Try googling it.

[Lisa33]

Costco seems to be the cheapest for VSL-3, but you can order them online or most likely at your local pharmacy.

So sorry you are dealing with c-diff, momof327. It is an awful illness, and most of us never heard of it until we got it after taking antibiotics. As the others already said, the real healing takes place after meds are finished. However, recovery can be slow and like a roller coaster for many, especially if you were on meds for quite some time. Stools can be all over the place. Many also get post infectious IBS. If God forbid you relapse again, I would look into Dificid or an FMT. Dificid, including tapers with Dificid have cured many after vanco tapers have failed. Hopefully, you won't need it and will be cured after this vanco taper, but it's always good to have a next step plan as a just in case in place with a GI or ID doctor.

I hope you feel better soon and this taper does the trick once and for all.

Lisa