Will I ever find help....

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TailG8Juliet
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Will I ever find help....

Postby TailG8Juliet » Thu Jun 19, 2014 1:11 am

I have had c diff for going on three years now and the pain in my stomach is becoming unbearable. .. I have been on so many antibiotics I can't even count anymore and did the fecal matter transplant and still nothing. .. I use to get help for the pain but now that I have moved to another state it seems impossible to find anyone who is willing to help me because this huge abuse thing all over the news .... my primary doctor referred me to a pain management specialist who not only told me it's not possible that I have had c diff this long (even though I brought him my medical records with the repeat positive test results) but he had the nerve to tell me I looked like I was storing most of my meals so I'll be fine ( calling me fat pretty much) ! I use to have a amazing gastrointestinal doctor when we were still in the army life but now in civilian life I can barely find a doctor who knows anything about c diff. Going on three years and these doctors best advice is eat activia yogart...... I feel like I will never get help and that I will live with this the rest of my life. Just today alone I have been to the bathroom 9 times and each time the pain in my stomach is so excruciating that I'm drenched in sweat yet not one single doctor near me will even consider giving me anything for pain to help... what is the point of pain doctors if they're not willing to help anyone especially with medical record evidence. ...

seekingcure
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Re: Will I ever find help....

Postby seekingcure » Thu Jun 19, 2014 1:55 am

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 80%) 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.)


I am so sorry you have been suffering for so long. If you are still testing positive for c-diff, then you need to be getting some sort of treatment for it. Have you tried a taper/pulse of Vanco or possibly Dificid? I was cured with a very long course of Vanco and several other mods were cured with Dificid when nothing else worked for them.

Pain medications are not typically recommended for someone with active c-diff because they may slow down the rate at which the toxins produced by the bacteria are cleared from your gut. Same goes for Imodium.

Some people require more than one FMT to be cured of c-diff. Look under "Board Index" for the Doctor's page and you might find one listed that is close to you that would be able to help you.

If you are currently testing negative for c-diff, you could have developed post-infectious IBS. The symptoms mimic c-diff and it's often difficult to tell the difference. Antispasmodics like Levsin and Bentyl are helpful for the symptoms of IBS. I can't go a day without taking one or the other, usually several times. A heating pad on low (with an auto cut off for safety's sake in case you fall asleep) is also very helpful for abdominal cramping.

You might also look into finding an infectious disease doctor locally. Perhaps they would be able to offer some better treatment options for you.

I hope you find a good doctor who can help you get some relief. Let us know how you do. Bea
Bea

TailG8Juliet
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Re: Will I ever find help....

Postby TailG8Juliet » Thu Jun 19, 2014 2:07 am

Well i searched online today for a new doctor and I found a huge facility in a huge city near by with great ratings I'm hoping that this doctor will be more knowledgeable about c diff then the past ones I've seen over the year thank you for the feedback , my appointment is Friday so we will see what happens

beth22
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Re: Will I ever find help....

Postby beth22 » Thu Jun 19, 2014 2:12 am

It is possible to have low grade c diff. I had it for a long time. However, in some people c diff triggered other conditions, such as ulcerative colitis, Crohn's, microscopic colitis, etc. Have you had a colonoscopy done? I would make the appointment with the new GI and discuss all these possibilities with him. Also, have you been tested for other pathogens like ova and parasites, giardia, cryptosporidium, culture for other bacteria? Some people got other things after c diff. I got campylobacter and the symptoms were exactly like c difficile. I turned in a test for c diff along with a test for a culture for other bacteria and it was not c diff, but rather the campylobacter. C difficile makes us more prone to other intestinal infections sometimes.

What Bea said is correct about the FMTs. I had to have several before the c diff went away.

TailG8Juliet
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Re: Will I ever find help....

Postby TailG8Juliet » Thu Jun 19, 2014 2:24 am

No I haven't had any more tests of anything else recently because my husband got out of the military so we moved which then I lost the gastrointestinal doctor who had been seeing me since this all began, then once we settled I only had a primary family doctor who gave me different antibiotics for a whole year then just recently referred me to another gastrointestinal doctor finally but he wanted me to do all this stuff without even considering discussing giving me anything for the pain in my stomach and also lately my left side has been starting to hurt so that's why I found another doctor today who will hopefully meet somewhere in the middle with me on this whole thing. ..

beth22
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Re: Will I ever find help....

Postby beth22 » Thu Jun 19, 2014 2:33 am

I would try to get the appointment as soon as you can and ask the doctor for something for the pain while you do whatever tests he or she says you need. You should not be in pain all the time and there has to be a reason. Once the doctor finds out what it is, you can be treated.

TailG8Juliet
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Re: Will I ever find help....

Postby TailG8Juliet » Thu Jun 19, 2014 2:40 am

Yeah its starting to scare me that this all has been going on for this long and seems to be getting worse , the last doctor I saw sent me home with a long checklist of tests he wants me to do, it's just difficult to find the place to go that has all the tests I'm suppose to do because the facility closest to me doesn't have all the tests that are listed on this paper

TailG8Juliet
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Re: Will I ever find help....

Postby TailG8Juliet » Thu Jun 19, 2014 2:03 pm

Well all together it has to be at least over 10 different kinds over the past three years but most recent is metronidazole and vancomycin and also colestripol micronized on top of it

Bobbie
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Re: Will I ever find help....

Postby Bobbie » Thu Jun 19, 2014 2:52 pm

If you are looking for a new doctor, see the Doctors Forum and the FMT Forum.

You've had a terrible time. I had C. diff 4 yrs. the first time. You will eventually find some one who can help you. Dificid might be a good choice - ask the new doc. Check your insurance as it is expensive. Many are having FMT's - they have a high cure rate - 92 to 94 percent.

Pain pills might make the situation worse because they tend to constipate. Many take anti-spasmodics, anti-anxiety, and anti-depressants to help them get over the worst. Again, ask the new doctor about them.

Let us know if you like the doc. Hang on. You will eventually get better, but C. diff. is a frustrating illness.

pinkangel
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Re: Will I ever find help....

Postby pinkangel » Wed Jun 25, 2014 9:49 pm

Oh my gosh I am so sorry you have been dealing with this for 3 years! What doctor did you find on here? Maybe a course of vanco with fmt colonoscopy and followup enemas and pills can help. My doc seems to think its hard for some people to get rid of it because it can hide in small intestine. His way to treat bad cases is the top down method with colonoscopy pills and a few days of enemas. I do not think he has had a failure this way. There is a risk of getting sibo from top down so you need to research it and discuss risks if you do it. I Hope that you find help where you are located soon. The ibs after this infection is not fun but if you can clear the infection it should help the pain somewhat.


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