C. diff. Success Stories

[Bobbie]

Posted: Wed Jun 02, 2004 4:51 pm by Bobbie

This topic will contain messages from those who fought and won against C. diff. and are thoughtful enough to keep posting to support others who are still struggling. Thanks, gals & guys.

MX posted this. Thanks much.

Hi Karen,

I got pregnant one month after doing the treatment. I really didn't intend for it to happen so quickly, but apparently second babies "happen" a lot faster than the first ones!

I had very good indication that I was healed after a few weeks. Before the treatment I always had C. Diff. back in the middle of pulse dosing.

As long as you get cured, I don't see any reason why having had C. Diff. should reduce your odds of getting pregnant. In my opinion, you just need to get rid of it before you get pregnant and be very careful about having probiotics, lots of fibre and if possible no antibiotics after you get pregnant (all good healthy practices for anybody at any time).

I have no scientific proof, but in my opinion, for a long time patient of C. Diff. doing the treatment gives you the highest chance of not getting C. Diff. again, as opposed to getting cured on "your own". Assuming that you could recover on your own (most people do eventually), I would not be sure that all your original intestinal species of good bacteria would even make a full come back (or would do so within a year or two). However, if you supplemented yours with a "full set" from a healthy person, I think you would be in good shape.

In terms of food I had the red/brown beans (the ones used in Chili) and Soya beans and lentils and brown rice. I like carbs a lot, so I had breads and chocolate and cakes and pies etc. For the first few months of C. Diff. I tried strict diets, but when that didn't work, I didn't really deprive myself again. After the treatment, I really went for all the summer fruits and ate to my heart's content ;-)

I hope you can do that soon too!

Good Luck,

MX

Posted: Wed Jun 02, 2004 5:06 pm by Bobbie

Allison posted this. Thanks, Allison.

By Allison (205.188.116.199 - 205.188.116.199) on Wednesday, June 02, 2004 - 04:40 am: Diane,

Well, I didn't have any more relapses after the vanco, but who's to say if that was because of the actual dosage? No way to know for sure.
This was the first and only time I was on vanco. Previously, I always relapsed with the flagyl, and that darn stuff came close to sending me off the deep end. Very nasty drug for some folks.

After all the research I've done, all the medical brains I've picked, and most of all, after reading everyone's experiences on these boards for the last three years, I really believe that once you're in a cycle of multiple relapses, cdiff will give up when it's damned good and ready. It ALWAYS does. I would only be concerned if there has been NO improvement in your symptoms while on vanco. Talk to your doctor about it.

Posted: Fri Jun 11, 2004 3:44 am by Bobbie

Silver posted this. Thanks and congrats., Silver.

By silver (64.114.79.13 - 64.114.79.13) on Wednesday, June 09, 2004 - 04:51 am:

well i can say that i am cured. i was diagnosed with c diff in July of 2003 and by early feb 2004 i no longer had symptoms. for seven months i battled with c diff and often wondered if i would ever get better. someone on this site once wrote that each person is different and what cures one person may not work for someone else. i often thought of that when i would get discouraged. i tried to find the right combo of food, probiotics, antibiotics until finally something clicked in my body. i do suffer from minor ibs now but with a low carb and sugar diet i am doing extremely well.

Posted: Thu Jan 13, 2005 2:08 am by Bobbie

By Lori W. (69.140.230.233 - 69.140.230.233) on Thursday, January 13, 2005 - 11:07 am:

I just wanted to thank everyone (Bobbie is #1) for your support on this website. October 2004 marked 5 year old Madison's 1 year anniversary of being C-Diff free. I have been wanting to update everyone on how Madison got through her 9-month dealing with C-Diff in 2003 (sorry, I couldn't find my old thread) in hopes of helping others. It has just taken me this long to get the courage to talk about it again!

Madison tried Vancomyacin and Flagyl but kept getting strep - it turned into a vicious circle (having to take antibiotics for strep while fighting c-diff from the antibiotics). So I don't really know if those Rx would have worked under other circumstances. She finally got her tonsils and adnoids removed as well as getting tubes.

We switched doctors to Dr. Lynn Duffy in Fairfax, Virginia. Dr. Duffy put her on Cholestryamine (cholesteral medicine) Power (1 teaspoonful, 2x/day). Madison also took Culturelle (1 pill opened up in icecream 2x/day)- The best probiotic I have found (CVS carries it). Dr. Duffy had a concrete plan to follow and I am very, very grateful to her and her staff.

Madison has had several occasions where she needed anitbiotics and thank G-d she got through them (taking Culturelle as well).

Good luck. I hope this helps and gives you hope!
Lori

Posted: Sat Jan 29, 2005 6:06 pm by Bobbie

Mary T. posted this. Thanks, Mary.

By MaryT (24.218.97.96 - 24.218.97.96) on Wednesday, January 26, 2005 - 12:04 pm:

Sue....what finally seemed to work for me was a long stretch on vanco and then pulsing off (I worked with my doctor and I used the pulsing regimen here on the site). I also took Culturelle and at the end took about 4 a day (on advise from the staff at Culturell) and basically tapered that also. I also at the end started taking reuteri and bifidobacteria. I take one Culturelle every day still (over a year later) and alternate days 1 reuteri or one bifidobacteria. My doctor had put me on Culturelle as soon as I got sick. He has so many cdiff patients and tells me he sees more and more of it all the time.

Posted: Thu Feb 10, 2005 7:24 pm by Bobbie

By MicheleL (24.201.26.166 - 24.201.26.166) on Wednesday, February 09, 2005 - 10:26 am:

I was the BioK that put me on track and then HMF Forte. Also the low carb diet, lots of rest and theraputic message. It took 6 months to kick this and 6 months to recover from it draining me.

Actually, I can never kick it but I can consider myself in a remission state.

Posted: Sat Feb 12, 2005 8:38 pm by Bobbie

By marcy (65.28.103.75 - 65.28.103.75) on Saturday, February 12, 2005 - 10:30 pm:

I remember reading here that if you made it to day 70 you had a good chance of not relapsing. If anyone has followed my countdown--I made it!! Interesting that on day 70 I had the most "iffy" day ever and a little of that continues. I haven't changed my diet or been under stress but I jumped back on the probiotics that I had gotten lazy about taking. I have been lurking a lot and answering if I think I can help someone. I don't have near the experience/knowledge that some of you have. However, I do want to add something about plastic surgery dangers -since plastic surgery is on the rise. I will come back later and compose it for you Bobbie, in case the radio thing works out. I even registered for my next marathon and need to get out the door now for my 8 miles. Wish me luck- I tend to be a runner with "bathroom issues" anyway so I am a little nervous.

Posted: Wed Mar 02, 2005 7:01 pm by Bobbie

By Gina Crogan (24.147.163.2 - 24.147.163.2) on Tuesday, March 01, 2005 - 03:01 am:

Hi Everyone,

I just wanted to update all of you on the progress I have made. I am over the c-diff and have been since my 1st round of Vancomycin given to me in October. I do have some cramping every so often. It really took a few months to get rid of the body aches I got every day (same time). My body has changed since having the c-diff. I go 3x more as I did before I had it....but it is actually a good thing.

I just wanted to let those of you that are still dealing with this horrible thing that there is a light at the end of the tunnel....some may have it longer than others but they will get over it. It was such a horrible experience for me...I just had a baby (got it from labor) and it was suppose to be a time of joy but I really never was so depressed in my life!

Good luck to all of you and thank you for those who have helped me through it!

Gina Crogan

Posted: Thu Aug 04, 2005 7:06 pm by Bobbie

03 Aug 2005 19:55 by Judi

To Bobbie and everyone

Hi, guys
just wanted to post that i had success and i am off the vanco for over three months now so there is light up ahead--i know i whined a lot but you guys beared with me and helped me a lot with all the info and just being there. The "three day rule" really is good, sound advice.
Love ya all
Judi from Tampa

[Bobbie]

Jenpriv posted this in Lily's Case History. Thanks, Jen, for keeping us updated and for continuing to post to support others.

Posted Sat Aug 20, 2005 3:27 pm

Hi All: I just wanted to check in and let everyone know how Lily is doing. We've not seen any recurrence of C Diff. She has had a couple of instances where it looked like it had returned, we upped her Culturelle and made sure her sugar intake was very low and she bounced right back, thank goodness.

I've got to say that she's been C Diff free for some time, but I am still so very afraid of it! It was such a long, painful battle for her - I still watch her stools every day. I'm hoping that this fear will become less and less and someday it will not be a concern.

She is on new seizure medication that she takes twice per day, rather than three times per day and she is a happy 2nd grader! She had some seizure activity in June, but we hope that this new med will be our answer for total control. It would be lovely if our next choice would be whether or not to remove her meds due to being 2 years seizure free! I SO want that choice!

My health issues have evened out and we are all hanging in there. I'm so proud of my little one and grateful for this site. I will continue to check in and try to offer the support that you all have given us. Thank you!

Jen

[Bobbie]

Susan posted the following message. Thanks, Susan.

Posted: Mon Oct 03, 2005 1:07 pm Post subject: 1 year out!

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Hi Everyone, It's been about 10 months since I've posted anything but I thought since it's just about a year since I started with C Diff I would write a post letting you know that I'm all better!

My symptoms started in September of last year but we didn't figure out what was causeing it until December 04. I had 10days of Flagyl and was fine for two weeks and then it came back and I took 14 days of Flaygl. This was in January. I would like to state for the record --because I asked this question frequently on the boards back in Jan/Feb and everyone told me it was not possible-- that digestion problems CAN in fact be temporary after CDiff. All the doctors involved tried to convince me that I had developed IBS and the woman I spoke to from the CDC told me that the digestion problems lasting beyond a month were not a result of the CDiff. It took me probably 3 or 4 solid months after I was healthy again but eventually all the residual digestion problems went away, I was unable to eat any vegetables or anything that was challenging to digest (alcohol, etc)... Slowly but surely I've been able to put everything back in my diet and my digestion is 100% back to normal.

I know it can be very discouraging while you're sick and it can seem to stretch on endlessly. I just wanted to share that a year after first getting sick I am 100% back to normal so it is possible. I have even taken antibiotics with no ill effects (though admittedly I'm now obsessive about yogurt when I take them)..... I guess that's all, I wish you all speedy recoveries!!!! (but be patient if it's not, it will happen eventually!)
Susan

[Bobbie]

Message
Marcia

Joined: 22 Aug 2005
Posts: 94
Location: Oregon
Posted: Thu Nov 10, 2005 9:41 pm Post subject: 70 days c diff free!!!!!!!!!

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Hey guys! it has been 70 days since my last flagyl pill. Hopefully it just keeps getting better each day. I hope i don't bite my tongue :/ i just had lunch at this new mexican restaurant.
I go to bathroom once, rare occasion twice, i developed some tingling 2 weeks after i finished flagyl. It seems to come and go. I have this twitching in my fingers too. Hopefully it's all part of c diff and not something like ms or anything close to that. I've been tested for diabetes, thyroid, b12 deficiency and all negative. I've started working 2 weeks ago. I work at a call center for harry and david (it's a gift company), never thought it was such a stressful job. I have got some pretty impatient folks on the phone this 2 weeks of working. It gets easier each day though. Now i just worry about colds and flu. Right now i am having bad allergies, after c diff i am even scared to take allergy medecine so i will just tough it out. Ok just wanted to share my 70 day victory (knocking on wood)
Wishing you all a speedy recovery, and a much happier 2006. I certainly will not forget the year of 2005 in a great while.

[Bobbie]

lynnjr Dec. 13, 2005 4:51 am

Hi all -

I wanted to update you all and let you know that it's now a full 6 months since my last relapse of c diff (which was June 12). I still feel terrific. And I'm staying away from antibiotics at all costs. (I had a series of UTI's but stuck with treating them with cranberry juice, garlic pills, D-mannis, etc. It took longer but finally seems to have worked).

Starting in early September I took the VSL twice a day for about 7 weeks (until I hit what I'd heard was the magical 70-day mark), then I went down to once a day. After another few weeks I dropped to about every other day for awhile and at this point almost never take it. I do still eat yogurt most days since I don't want to take too many chances and my system is doing well while still taking it.

The single biggest difference for me in the way I felt definitely happened after I started on the VSL. I went from feeling like I was slowly getting better to seeing a rapid improvement in the health of my GI tract.

You guys are terrific! I don't think I would have made it without this list. It is truly a godsend! I learned *so* much from everyone here. And mostly it made it so I didn't feel alone. Thanks again!
_________________
Lynn

[Bobbie]

maria
Wed Jan 04, 2006 2:41 pm Post subject: Can it come back after a year without any antiboitics?

I had c-diff for 10 months then did the infusions and was cured. It has been over a year now and I havent been sick. I recently caught the stomach flu and for the past 2 days have had bad diarhea. I am wondering can I get c-diff again after a bad stomach flu? It feels just like when I had c-diff?

Posted: Fri Jan 06, 2006 12:51 am
Just thought that I wold let you all know that I am feeling a lot better today. I went back to work and I feel OK! I guess I just had a scare for a moment.

I suffered from c-diff for 10 months and dont want it ever again! All I can say is thank god for the fecal infusions. I can honestly say that it saved my life. If any people are hesitant, dont be! It may be a bit gross but it works!!
Maria

[Bobbie]

Kcinatlanta posted the following:

Posted: Sun Jan 15, 2006 1:27 am Post subject: New Poster - What Helped Me

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I am another who contracted C-diff from Clindamycin due to a tooth abcess, also in July 2005. I actually suspected C-diff myself, but when I went to my family doc, she LAUGHED at the suggestion - and she was fresh from medical school! She suspected guiardia (sp?) and prescribed Flagyl. I took it and promptly relapsed 3 days after finishing the meds. Bathroom visits were 20-40 per day! I then went to a specialist and tested positive for toxins A & B. Was prescribed a second round of Flagyl, and discovered I was allergic to it. I finished it anyway (HORRIBLE STUFF!), and again relapsed after completing the course. I went back to the specialist and was prescribed Vancomycin.

My complicating factor was that I was a full-time student (OLD student - I am 44), no health insurance, and absolutely broke. The Vanco cost $750 out of pocket for a 10-day course. Thank God for credit cards. For this reason, I chose to pulse after only 6 days (with MD approval) in order to leave 4 days supply to kill off spores. Miraculously, it worked! I also took Culturelle before and during and after the course of Vanco, whipped up Kefir-yogurt-DanActive-banana-fruit-OJ smoothies for my meals (which pretty much constituted my entire diet), and took daily vitamins.

I was laid off from my job when I first became so ill, which was a blessing in disguise since I was in no shape to work. I barely managed to finish my classes. I have had quite a few mini-relapses since stopping the Vanco, but I have chalked those up to IBS or just the long process of getting back to some semblance of normal. I have eliminated almost all dairy from my diet, have not touched alcohol since the diagnosis, and avoid fatty food most of the time. I still drink the Kefir smoothie concoction almost every day, particularly if I start to feel "iffy." (Kefir is a probiotic and is available in most grocery stores in the dairy aisle. It is available plain and in a variety of flavors.) I also avoid pork chops and pork tenderloin since I have had BAD reactions each time I ate either. I also cut back on sugar if I start to feel crampy. To date, I have lost 45 pounds - another blessing, since I can once again get into my "skinny" pants.

During my second round of Flagyl I found this site and read virtually every post here, which I am convinced is what helped me get better because I was informed about what had worked for others. My doc certainly never mentioned probiotics.

I still get tired easily and have about one bad day per week, but that is a dramatic improvement over how it was. I should probably have been hospitalized, but thankfully I avoided that. I am terrified of relapsing, but am SO grateful to be among the fortunate who suffered only 4-5 months with this. Honestly, if it hadn't been for this site, I doubt I would be even moderately well now. THANK YOU!!! My thoughts and prayers to all of you - hang in there!
_________________
Kefir helped me!

[Bobbie]

LiLu posted this.

Posted: Fri Jan 13, 2006 8:53 pm Post subject: Update

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Hi all I've been meaning to swing by check in say hello and all that.

Well that last 14 days of flagyl did the trick for me.

I wasn't sure as things did not get back to my *new normal* for a couple of week.

Things I noticed:

The mucus went away after about 2 weeks.

Stool is firm less string bean.

Still light in color

My new normal is that instead of everyday 10 am to the bathroom as I used to.

It now every other day, morning time though undetirmined.

no gurgly gut unless I eat allot of beans or broc.

I still don't eat allot of red meat.

I hope never to take another antibiotic as long as I live.

That's all.

LiLu

[Bobbie]

Judi posted this. Thanks.

Posted: Tue Jan 17, 2006 2:53 pm Post subject:

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hi, Christina
after i had my first relaspse, i did order vsl#3 and i really feel that it did help me beat this thing and along with florastor. after i came off vanco in eleven days, i continued with these probiotics for awhile. I felt "cured" but for a long time afterwards, my stools were the "new" normal--very small and iff sometimes and of course i still worried about another relaspse. then i decided to try eliminating the probiotics to see what would happen since i did feel ok and guess what? i have been having normal stools almost like before the c-diff. of course i have to watch what i eat most times. but, this is just what seemed to work for me--everyone is different.
it has been over 6th months now since the relaspse. like most people who had cdiff, i still worry but try to take it one day at a time. anyway, Christina, i did get over this and so will you--
God Bless

Judi
from Tampa
_________________
judith ingley

[Bobbie]

Vicki D posted this. Thx. VickiPosted: Thu Feb 02, 2006 12:47 am

I had the fecal infusion done a year and a half ago. I was cured immediately. I took vanco up to the day of the procedure and didn't take one that morning. He had me take prilosec to reduce the stomach acid production the evening before and the morning of, to give the good bacteria its best chance of survival. I had the infusion via nasogastric tube, which of course goes through the stomach into the small and large intestines. My Dr. thinks that's the most thorough method because it reaches both intestines, where spores may lurk.

I didn't have diarrhea again. I was very kind to my system for months afterward, eating rather bland foods and no ice cream, etc. I continued to take probiotics daily at first, then reduced to a few days a week. I gradually dropped down to no probiotics after about a year. I admit even though I was cured I was still nervous about relapsing again.

I hope this info helps. Let me know if you have more questions.

[Bobbie]

cstok002 posted this. Thx.

Posted: Sun Jan 29, 2006 11:14 pm Post subject: what helped me

i began feeling sick july 30, 2003, i began to feel weak, i had a low grade temperature. i did not start off having diarrhea, but i was unable to move my bowels. This went on for about a week, then i started having bad abdominal cramping, back pain, and then diarrhea. I went to my primary care physician, he said i had a virus. I went home hoping i would feel better, but it just got worse i began to have more diarrhea, mucous in my stools, loss of appetite. I am a nurse so i thought i had c diff, giardia or something. I went back to see my physician and asked him to put me on flagyl. I took the flagyl for 1 week, and i still did not feel any better. I made an appoint ment with a Gasteroenterologist, he had me give a stool sample and it was + for c diff. He prescribed vancomycin 250 mg 4 times per day for 21 days. I felt wonderful for about 3 after completing the med. Then the symptoms came back I called the gi doc agin, he called in more vancomycin for me. He instructed me on tapering the dose, i was scared to death this was not going to work. Lucky for me i found this site and i began taking primal defense, and acidophillus. It is 2 1/2 years later and i am c diff free thanks to this website. I still take 2-4 primal defense caps per day and 1-2 acidophillus caps per day.

[Bobbie]

stephine
Posted: Thu Mar 02, 2006 3:25 am Post subject: CURED WITH FECAL INFUSION

I haven't posted very much on this site, but just wanted to let you all know that I have been cured using the fecal infusion method per Dr.Borody. I have updated my story... it's Stephanie 24 (Omnicef) with all the details. I can't tell you how amazing it feels not having to watch my back anymore.... worrying it could creep up anytime I go to the bathroom. It's all over with after a year long struggle in and out of the hospital with psudomembrane colitis and the doctors clueless as to what to do because I wasn't over 65 and in terrible health. If you are thinking about doing this... don't wait!!!!

Vicki D
Posted: Thu Mar 02, 2006 4:42 am Post subject: Cured with Fecal Infusion
Congratulations, Stefanie! Thanks for writing to let everyone know!

I also was cured over a year and a half ago with a fecal infusion. As bad as it sounds, it really wasn't a bad experience, and it sure cured the problem. I had been fighting c diff for 5 1/2 months, and voila! Cured in 1 day (I had one treatment via nasogastric tube).

[Bobbie]

dalamy
Posted: Sat Dec 31, 2005 5:51 pm Post subject: My 1 Year anniversary!

Today marks 1 year since my C. diff. diarrhea started - on December 31, 2004.

I am "better" - but still not like I was before C. diff.

Wishing this gives hope to all of those still suffering - just think what a year can do!

[Bobbie]

dalamy
Posted: Sat Dec 31, 2005 5:51 pm Post subject: My 1 Year anniversary!

Today marks 1 year since my C. diff. diarrhea started - on December 31, 2004.

I am "better" - but still not like I was before C. diff.

Wishing this gives hope to all of those still suffering - just think what a year can do!

[Bobbie]

judiingley
Posted: Wed Mar 08, 2006 12:15 am
hi, everyone that just posted here--it has also been a year for me,too and, dito, about not really being the same as before the diff. vanco free for well over the six month mark and feeling well for the most part except for the occasional loose stools. i believe mostly it is from the foods i eat that i shouldn.t eat. milk products is one of the "bad" foods. i relaspsed once and the next round of vanco did the trick for me--only for eleven days then off and praying. but i did take vsl #3 and florastor for the next few months. and yes, i still worry about it returning--just one of the perks, i guess. for the one,s who are still suffering with this, keep with this support group--the people here have been a blessing to me and so much knowledge on this site.
God Bless
Judi from Tampa
_________________
judith ingley