C. diff. Success Stories

[Bobbie]

Paulinne posted this re. her recovery from C. diff. See her case history for more info.
Posted: Fri Mar 10, 2006 2:48 pm Post subject: Update-Happy Ending?

It is six months following my hospitalization and I think I am finally past this thing! It is just in the past few weeks I have felt my energy and mental clarity returning. Am playing tennis even better-won big this week! I can go and blow like I used to-but I don't think I will. This dreadful illness has taught me I can't be all things to all people. It has shown me how precious the gift of motherhood is and mostly what a gift life itself is. I do think about being sick with this in quiet moments-it is a disease that takes over everything, isn't it?

I am so glad this site exists. It is a safe therapeutic place to work things out in each person's individual way. Don't give up hope-recovery is possible.

Pauline

[Bobbie]

poltroon post this. Thx.
Posted: Mon Mar 20, 2006 7:52 pm

I would say the biggest mistake I made was being too perky when I saw my doctor or spoke to his advice nurse. In my mind, I was happy because I knew I would get help. But they saw someone in relatively good spirits, since they didn't see me at rock bottom the previous evening. I always felt better in the morning.

This significantly delayed my diagnosis, since no one actually figured out how sick I was until I suddenly spiked a 104 fever and couldn't really stand any more. (Me: "Um, isn't the top number of the blood pressure supposed to have three digits?")

The GI doc I was referred to prescribed the antibiotics but didn't seem to have any other ideas. I couldn't eat, wasn't eating, and I asked him for help and he suggested that I just eat. (Gee! Hadn't thought of that.) I was getting very desperate and in the process of writing an acquaintence with an MD for help, I decided to try looking for a dietician, and lucked into someone who had worked with about 10 other c.diff cases. She worked on healing me from the inside out and that was what finally succeeded. It also helped tremendously that she had email and I could ask questions and get support from her.

It took me 9 months before I was back to anything like normal (at first sitting in a noisy room was beyond my endurance), and thank goodness my employer was very supportive, allowing me to work part time and to move a couch into my office so I could rest when I needed to.

4 years later I am doing well, but being unable to take antibiotics for infections does make things complicated from time to time. The docs (I've moved so I have new ones) don't really know what to in those situations, and I'm not sure they really quite believe me.

[brileigh]

Hi there! I'm here to post my success story re: c-diff. I was diagnosed after taking clyndamyacin for a root canal procedure in August of 2005. I had diarrhea that I just couldn't get rid of, and my pharmacist suggested a stool sample for c-diff. I was blessed to have a wonderful PCP who believed me right away, and when the test came back positive she put me on flagyll. I took it all, and was OK for a few days but then horrible cramping. I was put on flagyll again but had numbness in my hands; she took me off of it and referred me to a GI specialist. All this time I was off of work, and was able to get short term disability through my PCP's recommendation. I had also gone to a naturopath and spent a ton of time and money on different treatments, but nothing seemed to be helping except diatary recommendations. I was TERRIFIED. I went to a PA at the specialist, and she was wonderful. She prescribed a new drug called Xifaxan; its indication is listed as traveler's diarrhea, but her office has used it successfully for c-diff over the past year or so. At my request (from the info on this site!) we decided on a taper dose. She also recommended a probiotic called FloraQ, which she gave me. I am so grateful to say that her suggestions worked beautifully, and I am now c-diff free. I lost 12# and am having some trouble regaining, but I feel so much better. I also know now that I have a mild case of IBS, and can control it fairly well with Metamucil wafers and avoiding certain foods. I eat yogurt daily and take FloraQ daily, and I drink a lot more water than I used to. I learned so much from this site, and other people who recovered helped me tremendously because the illness felt never-ending!! All the best to ANYONE who has struggled with this, and THANK YOU to all who have contributed to the site. My GI PA was so impressed with some of my knowledge!

[bearsmama]

Hello All-
Today marks 70 days c-diff free for me which, I've read on this site, is the magic number. I thought I'd share my story:
I'm 27 years old and contracted c-diff after the birth of my daughter in December. I had a very long induced labor during which I got an internal infection from having my water broken. I eventually had a c-section and got a second infection several days later at the site of the incision. I also had a third infection from a poorly placed IV. Yikes. I was given two IV antibiotics, one of which was clindamycin (sp?). I was also given oral antibiotics (kaflex ?) that I continued for 10 days after my hospital stay. I was not warned of c-diff by my doctor or the hospital so I had no idea the urgency of speaking to a doctor when I came down with c-diff symptoms 2 weeks postpartum. I happened to mention the severe "D" and nausea to my doctor after carrying on with it for about 5 days. He immediately ran a c-diff test but by the time we got the positive results back, I thought I literally might die. I had severe bloody D and was throwing up. I also had a very high temperature for several days. My doctor put me on Vanco after I refused Flagyl due to breastfeeding. My OB said Flagyl was fine and the pediatrician said NO WAY! People on this site will tell you they've nursed with Flagyl. It's a personal choice and very hard to get a clear answer on from the medical community so I don't blame them for wanting to continue the important work of nursing!
I did 10 days of Vanco (125 mg * 4) and relapsed violently after 5 days off. My OB put me back on Vanco for 21 days and referred me to an ID doc. The ID doc said if I relapsed again I had no choice but to take the Flagyl AND the Vanco together and to stop nursing. I lived in fear of that and sure enough, 5 days after stopping the second round of Vanco, I relapsed. The ID doc put me on 500 mg of Flagyl * 3 for 14 days and 125 mg of Vanco * 4 for 21 days. After a second pediatrician said it was fine to nurse with Flagyl (as did the ID doc) I continued nursing. My little one became fussy but I'll never know if it was a coincidence. I was very sick on the Flagyl (I prefer the c-diff!) and lost so much sleep over the nursing issue that I only took it for 2 days! I continued the Vanco and after much badgering over the Flagyl with the ID doc, I went to see a very compassionate GI doc who said that he would let me continue on Vanco for as long as I wanted and that he would leave it up to me to do pulsing or tapering or whatever I wanted to try. (My ID doc had said flat out "no" to both of those). I also started taking Culturelle twice a day and Primal Defence twice a day, as far away from my Vanco as possible. I also got up in the middle of the night to take the Vanco instead of taking the 4 during regular daylight hours as I had done in the past. After stopping the vanco I certainly had some scares with the D but I think that was just good old IBS. I also had a scary bout of the stomache flu that I was sure was c-diff! However, 70 days later and I'm still in the clear (I have been tested twice when I've had iffy stools and they both came back negative).
This was such a hard road with a newborn at home and also a touch of postpartum depression for the first 2 months but we are all happy and healthy and stronger (and wiser...take those probiotics!!!) for it. Good luck to all who are suffering from this nasty bug. It will eventually give up , I promise.
All the best,
Caitlin

[Bobbie]

Lori (mother of 4Es) posted this. Thx. Lori.

4ETs
Posted: Sat May 20, 2006 4:54 am

When my newborn daughter Kerena got c-diff in 1999, the disease was still very rare in our area. My son Evan had been one of the first cases in our town the year before. Even the cdc couldn't give us any answers. My son had been c-diff free for 10 months and none of us took antibiotics (I avoid them like the plague). If I remember correctly my daughter was only the second case of non antibiotic c-diff posted on this board (not that every case out there posts here, LOL). We ended up thinking that either my son was a carrier or a nurse brought the bacteria from another patient that day she was born (which is the theory I lean toward).

Was there anyone who prepared the food who may have had the disease before Easter dinner or who had taken antibiotics? Most people do not wash their hands properly after using the bathroom and even those who do use good hygiene end up re-dirtying their hands by touching things (faucets, hand dryers, doors, grocery carts). I'm not surprised the bacteria is spreading into food supplies.

Of course as Bobbie said, the initial diarrhea may have been due to something else and the cipro together with the lost flora from the diarrhea, brought on the c-diff. My son's began as a rotovirus type virus (which damaged his intestines) that weakened his defenses, which led to him getting bronchiolitis (which meant antibiotics) and then ear infections (more antibiotics) and we have no idea at which point in his 6 month battle with diarrhea it became infected with c-diff.

My daughter had 3 recurrences (1st bout at 5 days old, 2nd at 9 months, 3rd at 12 months and 4th at 15 months), but the last one was mild enough that culturelle took care of it. The first time she had it, neither of us had taken antibiotics. We believe she was sick before she even left the hospital, but she went limp at five days old. The second time she got it, she still had never had antibiotics (other than the vanco for the c-diff). My sister in law had died and we went to the funeral. I made her a bottle with the water from my brother's house (I normally breastfed) and the next day it started. The last two times, she had an antibiotic for bacterial infections (and believe me I fought them, but it was an eye infection). A couple of months ago, she had an ear infection and our pediatrician (with whom we've been for 3 years) was proud and amazed that she had never prescribed an antibiotic for Kerena before.
Now Evan and Kerena are healthy children and our attention has been redirected to the younger two who both have asthma and allergies (so I went from one nightmare to another).

I pray your family recovers quickly.
_________________
Lori, mother of Evan (1/9/98, c-diff from 5/98 to 1/99), Kerena (11/10/99, c-diff at 5 days old, 9 months old and 12 months old), Ethan (2/14/02; no problems), and Judah (3/3/04; bad diarrhea scare after RSV January 2005, but no c-diff)

[Bobbie]

skeeter
Posted: Tue May 23, 2006 3:57 am Post subject: Off antiobiotcs for 70+ days now

Hey everyone (long post coming up),

Just wanted to stop by and give an update on my condition. I have been off Flagyl for 73 days now. I know a few people here used 70 days as an important number, although I don't know why. Anyway, I have been progressing slowly but surely over the last few weeks, basically having several good digestive days, then one really bad one here and there, basically due to what I eat. I'm guessing I have a mild and strange form of IBS. I can eat a hamburger with bacon dripping with grease or a steak and have absolutely no problems but if I have fries or dessert, then I'm in trouble. I think sugar is the main trigger for it. I'm going to a different GI in 2 weeks to get another opinion since the GI I was seeing when I was sick has basically blown me off since.

A few weeks ago I discovered a product that I don't think has been mentioned here and I think it's changed everything for me. It's called Digestive Advantage IBS and it's a once a day chewable tablet. They're pretty much available everywhere and a month's supply costs around $8-10. It's has basically normalized my bowels for the most part and I now have completely normal movements without too much cramping or urges every day. I urge anyone who has IBS to check out their website. They will even send you a free 8 day sample.

http://www.ganedenbiotech.com/index.php?page=home

Just this week I have also been able to handle dairy with the help of Lactaid pills. I've had chicken parm twice now, the first time I had some gas and rumbling for about 4 hours after I ate it so tonight I just took two pills instead of one and my stomach has been absolutely silent. I think my first slice of heaven (pizza) is definately in my near future.

Finally, I'm letting my probiotics run out. I've stopped taking culturelle and once I run out of Florastor, I won't be getting another bottle. It's just been too expensive and I think I'm past the point where I need to rely on them to avoid a relapse (knock on wood). The Digestive Advantage IBS pill has a blend of lactobacillus cultures in it anyway. I think it's amazing how probiotics have really exploded in the time since I became sick in January. I had to order Culturelle online 2 months ago, now it's in every Wal-Mart and drugstore near me, along with other probiotics. I'll try to post from time to time, if there are any changes in my condition. Thanks again to everyone here for their support and advice.

[catherine]

After taking an antibiotic for a sinus infection in Feb, I became ill with cdiff 5 days after stopping the antibiotic. My MD sent me for a stool specimen and it came back positive for Toxin A&B. It had already attacked my colon so a CT scan showed colitis and so they started me on flagyl and levaquin but after 10 days I was sick again. In fact I had 4 attacks up through June. I went to a gasto doc and he did a colonoscopy and prescribed vanco but only 2 - 250 mg a day along with cipro - 15 days later I had my 3rd attack, which was so severe I ended up in the hospital with dehydration and the colitis was more severe. After 3 days in the hospital they sent me home with vanco (4 - 250 pills a day for 2 weeks, then 3 for 1 wk then 2 for 1 wk and 1 for 2 wks, along with lactinex (a probiotic) for 2 wks. I was on the vanco for approx 7 weeks and when I went off it - within 5 days, I felt the symptoms coming back, so I did the vanco again for 10 days. This time, thanks to finding this website I learned about Culturelle and Florastor. I started taking them before I stopped the vanco and continue to take them. I'm taking 4 Florastor and 4 Culturelle plus I eat at least 1 yogurt (Dannon Activa) a day. My gastro doc had never heard of these brands but he said there was no harm in taking them at these high doses. I do plan to gradually cut back. But it's been over two weeks and this is the first time in five months that I haven't had an attack 5 days after stopping the flagyl or vanco. The probiotics do make me a bit constipated but I take stool softeners for that plus the Dannon Activa helps with constipation. I am so grateful to this website and those of you that contribute. I'm not sure I'm cured but it's the best I've felt in five months, so I hope this info is helpful to some of you. I've been ordering the Culturelle and Florastor through my COSTCO pharmacy but I know you can get the Culturelle at Walmart. They are over the counter probiotics.

[Bobbie]

catherine,
Glad the site was helpful -- that's why it's here. Your story is similar to many -- C. diff. is sometimes to difficult to diagnose & treat effectively, but 80% of people do recover with l to 2 rounds of Vanco. Please educate others about C. diff. & report your case to Dr. McDonald at the CDC. His Email address is in FAQ-CDC.

Hope you continue to feel better.