New to the board

[KatieD]

Hello everyone,
I'm new to the boards, and have had C Diff since 7/22/09 because of antibiotics (for a fever of unknown origin- docs words).
The doc (GP) would not give me a referral to see a GI specialist, so I had to wait a week before my insurance company stepped in. He also told me to not look C Diff up on the internet. I am glad I didn't listen!
I am 26 years old- completely healthy before this, and have gone through 3 rounds of flagyl (the first one from the GP which wasn't a high enough dosage) and cholestyramine. I've also had a colonoscopy since then. I've lost about 22#'s and what seems like to me as a lot of blood & mucous (sorry to get all gross).
Today I am beginning the Vanco & Florestor combo. Is there anything else that I can be doing to help get rid of this nasty bug?
I'm making sure I clean the bathrooms and am on top of everyone to make sure they are washing their hands.
Any advice would be greatly appreciated!
Thanks,
Katie

[sangeeta]

I am sorry that you have contacted this ailment but you have come to the right place. We have a lot of valuable information here, which will help you tremendously in overcoming the illness. There are lots of wonderful people here who accord support selflessly. With time almost all of us get over it, just hang in there and all the best!

[monacat]

Welcome! I too was once a healthy woman with no major med problems to speak of! You are in good company around here. Troll around this site and you will pick up all sorts of info that your docs wont tell you.
Make sure that you are on the vanco long enough at a high enough dose or you may be wasting your time (and $$). Alot of folks on here(me included) were on long tapers and or pulses of the Vanco and this seems to be what "cured" it (fingers crossed). Once your done the Vanco you will need to replace the good gut flora you lost during all of this so a good quality probiotic in combo with the florastor for a while(long while) after treatment is a good idea.
Eat gently.... read up on the diets people have used on this site, there is so much info
In post C-diff recovery i have developed mild IBS and have been taking wild salmon oil supliments that have worked miracles in reducing the inflamation in my colon.
I used to bleach the toilet seat (and the floor under the toilet too!!)every time I used it with a spray bottle of water and bleach. Wash all clothes seperate from other family members in hot water and did my sheets very frequntly.
You will find this site(and the people on it) a great source of info and support during this battle. Good luck.

[KatieD]

Thanks for the warm welcome! Is there a probiotic that you'd use over others?
I am terrified that I'm never going to get over this. I am supposed to leave for vacation in a couple weeks (for my daughter's birthday) and I'm afraid I'm going to ruin it.
I had a horrible reaction to Flagyl both times (the mood swings were unbearable) but I haven't noticed anything of the sort on Vanco, so far. I am on the Vanco 4x's a day for the next 10 days, in addition to the Florastor 2 pills twice daily for 2 weeks, then 2 pills once a day for another week.
Is there anything else I should bring up to my doctor? He seems like he knows a lot about C Diff, and is on top of my care (I'm seeing him once a week).
Thanks again,
Katie

[beth22]

If you are already taking Florastor, you can also take a probiotic like VSL#3 or Culturelle. There are a lot of them out there, but these have helped some people. I take VSl#3, but am thinking of adding Culturelle. The problem is when you are on an antibiotic, it kills most of what is in the probiotic, although I'm not sure about Culturelle. So, when you are on 4 pills four times a day, you need to take the probiotic in between your doses. When I tapered down to 3 times a day, then I took the probiotic right before bed, as I didn't get up in the middle of the night to take antibiotics. It seems to have helped. If you taper down further, like twice a day, then it is easier. But, Florastor is not affected by the antibiotic, so you can take it whenever.

Af far as food goes, try to eat whatever you tolerate and have as wide a variety of food that you can, as those help replenish your flora too. C diff left me lactose intolerant, so after a few months I could no longer eat yogurt, but if you can, that is good, as is Kefir.

Good luck.

[Nancy1]

KatieD,
Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

You've gotten lots of good advice. Folks here are great! I lost 27 pounds in my 8 months of cdiff. I did much better on vanco than on Flagyl. Pulsing vanco was what finally worked for me; see the FAQ section for more info. I took 4 probiotics, but the only one I can say for sure helped me was Primadophilus reuteri, which gave me my appetite back, so I could stop losing weight.

Good luck. Let us know how it goes.

[anlockwood]

Welcome!

The only thing I could add to all the great advice you have gotten is talking to your dr about having a script for vanco to take along with you on vacation. This way if your symptoms do happen to come back(fingers crossed they won't) you will be able to treat and won't have to worry about spoiling your vacation. This will also put your mind at ease because you know you have a plan if something happens. I would just explain the situation to your dr and hopefully they should understand especially since you have relapsed before. Just explain to them you won't take it unless you are 100% sure you are relasping.

Also don't worry that you won't beat this, the mantra around here is "Everyone beats c diff" sometimes it just takes longer for some. There are so many many ways to treat it that are very effective and you can find details to all of them on this site.

Amanda[/img]

[KatieD]

Thank you so much. I will be talking to my doctor about bringing the Rx with me. I am so worried I won't beat this!!

[Vikingjeff28]

I had C diff twice and was on three rounds of Flagyl, one round of Vanco and Xifaxin for 10 days along with Colestid for 3 months(Cholestryamine). I lost 35 pounds and was in hospital 5 times for 30 days total with Colitis. Now I have gained back all weight and I am back in gym every day. You WILL beat it. Be diligent with your doctors, nice but firm in directing treatment of your illness. I would actually drive up to specialists office on really bad days and ask for help and they always helped me any way they could. I take Align Probiotics and eat 2 yogurts a day. I still have stomach irregularities and IBS from time to time as all of us do on this board but you learn what you can eat. GOD BLESS!

[KatieD]

Thanks Viking, it's good (not good, but you know what I mean) to hear someone that has gone through it multiple times, and come out okay. Mentally I am not dealing with this so well, I went and saw a psychologist tonight, who told me to talk to my doctor about going on some meds to deal with my anxiety. I can't bear the thought of taking any more medication than I am already on! Am I crazy? Or has anyone else done this too?

[Suezer]

For the first 3 months I took a low dose of Alprazolam, for anxiety. The anxiety was the worse while on Flagyl, which was during the first 3-4 weeks of my ordeal as well. Also I was very frightened in the beginning and this really did help me to deal with things.

I have not taken it in over 2 months, however I do keep some on hand.

I still have a hard time with this, but it does get better as you go along.

I will be going off the Vanco within the next week, so I will be a bit nervous all over again, I try to stay optimistic.

I too have considered at times, going to talk to a professional,I think it could only help at certain points of illness,treatment and recovery. The biggest obstacle seems the feeling that noone understands,it can be somewhat isolating. Glad you found this site, you know everyone here can relate somehow to your struggle with C Diff.

[Nancy1]

During the time that I had cdiff, I had 5 basal cell carcinomas, my father died, and my sister (my only sibling) died. It felt like my whole life fell apart. I took Paxil for depression (I think anti-depressants can help with D as well) and Klonopin to sleep. Both helped me a lot.

[Kathy George]

Katie,

I too was place on Flagyl by my primary doctor when I had C-Diff. Three times in fact; The first time the dosage wasn't enough, second time same thing and the third time, after going to a GI, I was place on proper dosage, but didn't work as well. I was then place on Vanco for 14 days and, same thing, that didn't work. The GI then put me on Flagyl and Vanco, and again, that didn't work. Finally, he put me on the tapering method of Vanco, but after getting down to three a day i relapse into full "D".

I found out about Dr. Borody's Home Infusion Enema Therapy and after much research I decided to go that route. I was at the point of no energy, decease weight, and very fearful of never being the same again. I emailed Dr. Borody's Assistant with questions, and she graciously replied. Another lady, from another support group, was my mentor, as she was there with any suggestions etc. I am now 6 months C-Diff free as the Home Infusion Method was a great success. This method has a 97% success rate according to Dr. Borody. Good luck to you.

[Vikingjeff28]

They put me on 20 pills of Ativan(sp) the last time I came out of hospital. I thelped me sleep at night. From there I went to Lunesta for three months, now occasional tylenol PM when I can't sleep. I understand the anxiety, believe me.

[KatieD]

Thanks everyone, it is so good to hear I am not alone in all this. It's so depressing that I've been sick for 7 weeks now, and I feel like such a failure.
::venting:: I don't understand how doctors can just give out antibiotics the way that they do, knowing that C Diff exists. I understand if there is a true and utter reason for it, but to just hand them out like they do? It's scary.
I just don't feel like I'm ever going to kick this. ::vent over::
I keep hearing about people who have been on the Vanc multiple times, how did you handle it? Is there anyone here who did one round of Vanc and got better? I'm on day 6 of the Vanco/Florastor combo. I have 4 more days of the 4xs a day Vanc, and 8 more days on the Florastor. Yesterday I had only one "D" episode, so far today, (as of 10:45 am) I have had none. Is this a good sign?
I'm still in a lot of pain though. That doesn't seem to be getting any better.
Thanks,
Katie