Will I always have this?

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tarap
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Joined: Fri Jun 29, 2018 8:49 am

Will I always have this?

Postby tarap » Tue Oct 29, 2019 10:03 pm

I feel like I never will get rid of cdiff. I’m currently on a dificid taper. I went to a gi and he depressed me even more about this. I know I shouldn’t believe half of what he told me but it’s hard. Does anyone have multiple cdiff episodes and cure it for good? I relapsed 11 months and 9 weeks after meds without antibiotics. Thanks guys. Just feeling really down about this.

MSLOANE
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Re: Will I always have this?

Postby MSLOANE » Tue Oct 29, 2019 11:48 pm

Nope. You’ll clear it, if the abx fail you’ll get a transplant. It will go away.

AllisS
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Re: Will I always have this?

Postby AllisS » Wed Oct 30, 2019 12:14 am

What, exactly, did the GI doctor tell you?
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

georgina
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Re: Will I always have this?

Postby georgina » Wed Oct 30, 2019 1:20 am

A doctor should inspire optimism to the patient , and safety , and the fact that he would do everything in his power to fix the problem . Sorry your doctor disappointed you . Many of us on this web site had long battles with Cdiff and all of us have found something that eventually helped us . Some had success with long courses of Dificid , some with FMT (myself including). Crossing fingers , and toes , that the course of Dificid that you are taking now will be your magic bullet. It will go away eventually , you will see.

tarap
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Re: Will I always have this?

Postby tarap » Wed Oct 30, 2019 3:57 am

I have been seeing my infectious disease dr who has been great. Because of my relapsing without antibiotics so late he suggested if dificid doesn’t work he would think I should get tested to make sure I don’t have any other underlying problems. So I made an appointment with a gi that is in network and perferred with my insurance. This dr told me I would die from cdiff. He said because I work at a denta office he guarantees half my patients I see have it (which I know isn’t true) he still thinks flagyl should be covered. He said so many people die from fmt and if I want good care go to a broke hospital because hospitals are in it to make money. He also said I should never see my father again because he has a rare autoimmune disease that I will kill him. And that I don’t have anything else (but he never touched me or ran tests). He also said that I should get a colonoscopy but that I will probably pick up some other problem because he can’t promise they clean the instsuments properly. His only suggestion was to throw away everything I own and start over. I told him he was very depressing and negative several times. He was like I don’t sugar coat shit. One of the worst experiences ever. He was also out of the group (hospital) when I first got diagnosed. The first dr shrugged her shoulders and said eh some people live and some people die good luck. This dr was just like one day that dificid won’t work for you anymore and that’s it. He had more to say but that sums it up. I guess I agree about the broke hospital part because he is from a hospital that isn’t broke and he was terrible and my infectious disease dr is from a broke hospital and actually cares about me. I don’t even know how to report him. Clearly he didn’t want me as a patient.

D1dad
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Re: Will I always have this?

Postby D1dad » Wed Oct 30, 2019 6:27 am

I’d have run out of that Drs office and fast. I saw a cdiff specialist who’s well respected and has published many articles about the disease. I work in hospitals, nursing homes and with the general public and my doc thought of cdiff as nothing more than a speed bump in someone’s medical care that often needs to find the magic bullet. My doc was Confident I’d return to a normal diet and be able to use antibiotics again once my flora returned to a normal state. Nothing but hope from my doc and given my job saw no problems returning to it.

georgina
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Re: Will I always have this?

Postby georgina » Wed Oct 30, 2019 6:58 am

Wow Tarap , you "doctor" was a real d..khead.

tarap
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Joined: Fri Jun 29, 2018 8:49 am

Re: Will I always have this?

Postby tarap » Wed Oct 30, 2019 7:40 am

Yeah I guess when you look at A-holes everyday you turn into one. I am going to my infectious disease dr today for a follow up. Hoping he gives me more hope.

AllisS
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Re: Will I always have this?

Postby AllisS » Wed Oct 30, 2019 8:29 am

tarap, first of all, nothing that the GI doctor told you is true. Second, if he said those things to you I think you should file a complaint about him: to the patient-relations department of the hospital (if he's affiliated with one) and to the head of his department. If you feel uncomfortable doing that, at least let the infectious-disease doctor whom you see know what the other doctor told you. That doctor is a threat to patients' well-being; he should be reprimanded severely, at minimum.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

beth22
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Re: Will I always have this?

Postby beth22 » Wed Oct 30, 2019 2:00 pm

I agree with Allison. Report that doctor. That is the worst thing I have heard so far. A GI that I saw early on told me I should have my colon removed and I never went back. What he said is not even accurate. If you live close to a major university, ask your ID doctor if he can recommend a GI there. Most university hospitals take many insurances and they are usually up on the latest treatments as they do research.

MKW
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Re: Will I always have this?

Postby MKW » Mon Nov 04, 2019 9:30 pm

Hi, I wanted to comment I have many great/expensive hospitals in my city, and ended up finally getting successful treatment including a fecal transplant with an amazing doctor at a university teaching hospital. Teaching hospitals are progressive and their doctors have to be knowledgeable of new research.

Fecal transplants are safe and effective. This doctor you saw is completely ignorant.

You should consider you have been reinfected, or had a new exposure to c diff somehow rather than this being a recurrence.
Active c diff infection without antibiotic use is more common in recent years. And your body does not probably have a totally normal strong microbiome back yet.


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