Diane in Southern California

[DianeInSoCal]

I've been lurking here for nearly a month, which is how long I've been suffering from c diff. I was officially diagnosed (via stool, CT, and blood) on Sept. 10 and given 10 days of Vancomycin (125 mg 4 x day). Four days after finishing the abx, I landed in the ER again with worsening symptoms and was given a 7-day course of Vancomycin (250 mg 4 x day). I have had 8-10 bouts of D every day on the higher dose, which I finished this morning. Tomorrow I have an appointment with an ID doctor at Cedars Sinai, who has expertise in c diff. I'm hoping for some answers and some relief from the D. Thanks for being a tremendous source of support and information this past month. My family, including a former RN, doesn't seem to grasp the seriousness of the situation.

[DianeInSoCal]

I should have added that on Aug. 21, I was given a shot of Rocephin and a 10-day course of Augmentin (1000 mg 2 x day) for celllulitis I got from a puncture wound. I'm an otherwise healthy 49-year-old, who hadn't taken abx in about 15 years before the cellulitis.

[Kathy George]

Actually, it is my belief that your therapy treatments have not been long enough in duration to conquer this beast. Most well-versed physicians prescribed 14 days of Vanco. I don’t understand why you were prescribed a 7 day course after an abrupt relape; just don’t make sense to me. The Vanco tapering/pulsing method has a great success rate; hopefully your ID may consider this treatment option. Try not to be overly concern (I know - easier said than done), as there are many treatment options out there and there is no doubt that you will find the proper one which will assist in the recovery process. Please keep us updated!!!
Kathy

[DianeInSoCal]

Thanks, Kathy. You hit the nail on the head. The ID doctor has me on a two-month tapering plan, once we can get the D under control. She was so knowledgeable and spent a lot of time with me, reviewing my case, examining me, and discussing the latest research and trials. I'm so glad I was able to see her today.

[Kathy George]

Diane, Please keep us updated!!!!

[Bobbie]

Diane,
Hi - First let me give you the standard introduction: Welcome to the site. Read the first forum ALL USERS READ THIS FIRST and its subtopics - especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DISCUSSION BOARDS. They will guide you in using the site and answer some of the most frequent questions. Read Dr. Borody's and Dr. McDonald's articles and some of the topics in CDI - formerly FAQ - especially Hygiene, Nutrition, and Testing.

The majority (almost 80%) recovers with one to two rounds of Flagyl or Vancocin, but an unlucky small percentage does not and can suffer for months. Everyone eventually recovers, however, unless other factors are involved such as advanced age or severe health problems. There are new treatments “out there” now such as infusions and the new drug Dificid.
If antibiotics contributed to your c diff, be careful about taking them again. (See CDI - Antibiotics). Some people can tolerate them without a problem; some develop c diff again. (See Dr. Borody's article).

For further information see http://www.peggymemorial.org or peggymemorial on Facebook. There are several other support groups on FB. Check out the better medical web sites like the Mayo Clinic and Web MD sites.

This is a support site – not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had C. diff. It is a strange, unpredictable disease. Your best protection (for you and for others) is thorough hand washing and good hygiene.

Although we all know how devastating this disease can be -- physically, mentally, and financially -- this is not a fund-raising site. Anyone attempting to raise funds through the site will be permanently banned as a member.

Again, welcome. Remember, the “odds” are in your favour.

[DianeInSoCal]

So, this week was frustrating. The ID doc prescribed more Vanco on Monday and wrote the prescription to include enough Vanco to taper for a month. My insurance balked and between the pharmacy and the doctor (and me pestering them), the prescription wasn't available until today. I am hopeful that this week of large doses of Vanco, plus the following weeks of tapering the dose will do the trick. I'm so exhausted that I'm barely able to keep up with work (I teach at a university).

[gm37]

It is bad enough to be sick, but then having no cooperation from your insurance... That is frustrating!!! They should all have this for a day and see if they develop some compassion.
The Vanco should kick in quickly. The fatigue is hard to deal with. I taught 6th grade when I was sick. Another teacher was being treated for skin cancer with radiation. We both suffered from horrible fatigue. You don't understand it until you have been there. We gave each other support.
Have you tried drinking Ensure? I used the vanilla shake flavor. I thought it helped
Hang in there. Nap when you can. I used to climb the stairs on my hand and knees when I got home on Fridays. It is tough but you will make it.
Keep me posted.
Anne

[DianeInSoCal]

Thanks, Anne. I can relate to climbing the stairs on your hands and knees. I haven't been that tired, but I've had a few days where I struggled to put one foot in front of the other. I feel guilty complaining when I know that there are a lot of people who are much sicker than me, like your friend.

[gm37]

You have no reason to feel guilty. C-diff is a serious infection attacking a major organ in your body. When you have c-diff, you are sick!! It zaps your energy !! You are fighting to get your health back !! We all try to stay positive and support one another, but fighting c-diff really sucks. Finding competent, compassionate physicians is part of the battle.
Hang in there. You will get better.
Anne

[getwellsoon]

Yes Diane, never discount your battle and how you feel. We have all been there. It really sucks to have Cdiff in any form. It affects so much more than just giving you D. It changed my whole mental status. Thank God I had a compassionate and knowledgeable Dr. who insisted I take Ativan. I was crying all the time, I was so sick and scared and anxious etc. and he said the medicine would help not only my gut but my mental state and it did. I was in a bad way for months. We cannot know what each person goes through but we who have suffered through CDiff and relapses know how debilitating and scary it is for everyone who has it. This group was sent from God, I do believe that and helped me through my darkest times. That is why I agreed to become a Mod, so I could give back and help others. You hang in there and hope you are feeling better soon. I will keep you in my prayers as I do for all who suffer from this awful disease. Carol

[DianeInSoCal]

Thanks, Carol and Anne. I was quite anxious and scared at first. Now I'm just annoyed. I get wistful when I think of how limited my food choices are and how much I miss my typical fish and vegetable meals. I don't know what I would do without this site! It helps to know that I'm not alone. Thanks for your support and prayers.

[Bobbie]

You might try adding food back gradually. After months and months of a limited diet, I went on the "everything in moderation, nothing to excess" diet. Beware of milk products and excess sugar, however.

Don't expect anyone (even your sister, the nurse) to understand how you feel. No one "gets it" who hasn't had C. diff. Some posters with cancer and C. diff. said they found the C. diff. worse. I believe it is becaue it is so unpredictable.

Scream, hit the wall, and use a heating pad for comfort.

Let us know what happens with the new doc. tomorrow. Post any suggestions he/she makes. We are always looking for new ways to handle this rotten disease.

[DianeInSoCal]

After five days back on vanco (500mg, 4xday), I am finally feeling better. Woo hoo! It's been just under 48 hours that I've been feeling better, but I haven't felt this good since mid-August--before this whole mess started. I won't start tapering for another few days and I know my recovery will have highs and lows, but I'm very encouraged. I'm also very thankful for the ID doc at Cedars-Sinai.

Bobbie, thanks for your comments about my sister not understanding what I'm going through. I'm trying not to be resentful of her lack of support, but it's hard at times. I will keep in mind that people can't relate to c diff unless they've had it.

[DianeInSoCal]

So, I had a minor setback on Friday and Saturday, but I don't know if it was because of my very stressful and long workday on Thursday or too much tea on Thursday. I feel better today, but I caved and ate a few spoonfuls of peanut butter. We'll see how my system reacts. I'm getting very bored with my limited diet, which is a good sign. I just want to be normal again...although I fear that this is the new normal from all the posts that I've read. *sigh*