Sick && Tired ..

[perfectly.incomplete]

Hello everyone* !

I'm fairly new here, && I find this site to be very informative. I was diagnosed with c diff a few months ago following a round of azithtomycin for bronchitis. I was given a round of flagyl then had a relapse. I started a second round of flagyl that didn't work, so my doctor switched to vancomycin. I was fine, then another relapse. Now she insists I try the vanco for 6 weeks, using the taper method. My stomach has been constantly cramping, && I'm not sure what to do to ease it since Tylenol && ibuprofen don't work, && this pain is too much to handle. My insurance won't cover the vanco until Christmas eve, so I'm really lost, && scared! In addition, I have a broken rib so I feel like every day is a battle..

I'm sorry for venting, but I don't feel comfortable talking to anyone about this!

[seekingcure]

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

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 this unpredictable disease. All of our moderators and frequent posters had/have C. diff. (or a loved one with it) and know how physically, emotionally, and financially disabling it can be.

Again, welcome. Remember, the odds are in your favor. (End of letter.)

Sorry to hear that you are having such a difficult time. Vancomycin tapers and pulses have worked for many onsite, myself included. See CDI- Pulse dosing regime/tapering to see some schedules that worked for some of us.

Ask to be switched to liquid Vancomycin. It is much less expensive than capsules. Mine was less than $75.00 for a two week supply, without insurance. Hopefully, that will be more affordable for you. A compounding pharmacy can mix the liquid up for you.

Many of us have found a heating pad to be very helpful for pain relief. I really couldn't get by without mine. It helps a lot with abdominal cramping. Be sure to turn it on low and get one with auto off, though, in case you dose off while using it. Or you can use an old-fashioned hot water bottle. If you are having gas pains, ask the doctor if you can try some gas x. That might be helpful. You could also ask your doctor if you could take some Levsin or Bentyl to help with the cramping.

If you are not seeing a GI doctor, it might be a good idea to go ahead and try to get scheduled with one. You still have other options if the Vanco taper doesn't work, so hang in there.

[roy]

Like Bea said, ask for liquid vanco and self pay for it.
Its far cheaper than pills.
You need the meds now and not in another week!
Why are your insurance putting a date on supplying it?

[megan2]

I recommend putting a heating pad on your belly. It helps me a lot. I also heard that they can give you the IV vanco to take orally. See if you can get that. I would also recommend taking florasore and other probiotics to build up your good flora. I am on vanco now for the first time myself and I am very scared as to what will happen once I stop it. Hang in there .

[perfectly.incomplete]

My insurance only covers 40 capsules every 30 days. I finally got it Monday, && was supposed to get 59 but they'll only pay for 53. So I'm not sure if my taper method needs to be adjusted or not. I don't know what to do now because all my symptoms seem to be getting worse, especially since this is my third episode, && I can't see my doctor again until the 12th of next month. I've been using a heating pad, but I have an overactive thyroid that causes me not to be able to deal with heat, so it's like torture for me. So the C Diff constant stomach cramping && the pain from a broken rib is literally driving me crazy! I just feel so lost!

[Misscshell24]

Sorry you are dealing with this for a third time. Good that you got the medicine and will hopefully start to feel better soon. What dose of vanco are you taking and what taper schedule? Again, if your insurance won't cover the remaining pills, ask your doctor about liquid vanco; it is much cheaper. I am also doing a vanco taper and feel better than I have in months, hopefully it will do the trick for you. I've also had a difficult time with pain which has drastically decreased on the vanco taper/pulse. Are you on any medications or any medication for the c diff pain and broken rib?

[seekingcure]

If you can get your doctor to prescribe the remaining doses of Vanco as a liquid and self-pay for it, you could go ahead and take the liquid first since it only keeps for two weeks in the fridge. Then you can use the capsules in your taper since it keeps longer. That way you won't have to be concerned about the liquid going bad or losing potency during your taper. Two weeks of 125 mg. Vanco liquid four times a day cost me less than $75.00 without insurance, so the cost is not prohibitive.

[pinkangel]

Are you on meds for your hyperthyroid? I have graves too and Cdiff can make it worse in some people. Keep an eye on your levels with your endocrinoligist so they can make adjustments as needed. I understand about the heat intolerance. When my thyroid is optimal I do not have this symptom. I would have ac at home blasting with heating pad on the stomach. I agree about asking for liquid vanco for the rest of the pills you would be taking. You can just take the liquid now instead of the pills and finish with the pills. Maybe you could ask your doc for bentyl or some other type of med to help the cramping.

[justme]

You mention that you also have a broken rib. I also had a broken rib after resuscitation from a cardiac arrest in 2007. I had to sleep with my head and shoulders elevated to relieve the pressure on my rib. You might try an extra pillow or two and put one under your upper back and shoulders. Hopefully that will help with the rib. I also understand about a heating pad and hot flashes. I don't have a thyroid problem, but I do hormonal issues and get numerous hot flashes, so a hot pad during a flash is quite unpleasant. I hope this time the vanco will work and you can start your recovery.
Good luck and aloha,
Anne

[perfectly.incomplete]

Unfortunately, the taper method doesn't seem to be working, only off && on. So I've been referred to see a GI doctor. I'm having constant stomach pain && I can't keep anything down except things I make my NutriBullet. Even then, I have no appetite whatsoever.. I'm just ready to be cured!

[seekingcure]

I'm so sorry to hear you are still suffering. Have you looked at the list of doctors onsite in the "doctors" forum? Maybe you have a doctor who does FMT in your area and could consider that option. When is your GI appointment? Let us know what you find out.

[Bobbie]

Perfectly,

Vent away - this is what the site is for. Do stop usiing the heating pad if it bothers you. Do see a GI. Most have more expertise than regular doc's. Good luck to you and keep us posted. You will recover but it will take patience and perseverance.

[getwellsoon]

If the taper of Vanco doesn't work I would ask for Dificid or maybe go right for the FT. There are some Drs. that are doing a pill method of the FT so I would see if a Dr. near you is doing this. The company sends the pills to your Dr. and you take them for 2 days. Very good cure rate. I hope you feel better soon and let us know how you do. You really should be feeling better at this point in your treatment so seeing a GI or an ID is a good idea. Some of us just take longer so hang in there, youwill get well and this will be over at some point. Do try to eat a little something though, it will keep your strength up.

[roy]

When you say "it isn't working" or "I relapsed" what symptoms are you having?