First Time C Diff and Very Upset With Doctors

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rocky726
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First Time C Diff and Very Upset With Doctors

Postby rocky726 » Tue Jul 28, 2015 9:55 pm

I'm so glad I found this forum. After a month and a half of symptoms, the doctors finally tested me for C-Diff..and it came back positive. The nurse who called acted like it wasn't a big deal to have C-Diff. When I asked her about precautions she said, "Oh, just make sure everyone in your house washes their hands." Although I am not a nurse, I do work in the healthcare field (where I more than likely caught this bug) and know it's more than just washing your hands.

Today, I went to a "GI Specialist." First off, I only got to see a Physician's Assistant. She barely made eye contact with me because she was too busy asking canned questions that were on her computer screen. I was trying to explain to her that I've had right lower abdominal pain off and on for a number of years now and the C-Diff is only compounding matters. Well, once I said C-Diff you would've thought I announced I was going to kill her. She immediately tensed up. She scrubbed the bejesus out of her stethoscope after touching me with it. I felt like a disease-ridden vermin. She then announced I couldn't have a colonoscopy and didn't feel an endoscopy would be beneficial. Basically, she brushed me off.

I am in terrible pain right now. I haven't had a "real meal" in weeks. I fight just to stay somewhat hydrated. I have my work calling and telling me my doctor didn't fill out the correct information to grant me FMLA.

I know....a little cheese with my whine would be nice but I don't think I could stomach it.

Bobbie
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Re: First Time C Diff and Very Upset With Doctors

Postby Bobbie » Wed Jul 29, 2015 12:20 am

I answered your first post before I saw this one so now I know you do have C. diff - verified by tests. Frankly, I don't have good luck with physician's assistants. I have a complicated case and need all the education and experience I can get. When the scheduler suggests a PA, I decline. Call back and ask for the "real" doctor or find another GI as I suggested in my first post.

You need to find help as soon as possible. Call around and try to see a "real GI" a.s.a.p. Stress the pain and the difficult in staying hydrated. In the meantime, try to stay hydrated and at least drink supplemental drinks like Ensure or Boast.

I like your sense of humor and copied "a little cheese with my whine" in the humor section.

Do try to get help soon. There is always the ER - where you get "potluck" and sometimes another infection - but sometimes a good, caring doctor.

Let us know what happens.

rocky726
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Re: First Time C Diff and Very Upset With Doctors

Postby rocky726 » Wed Jul 29, 2015 9:53 pm

Thanks so much for your responses on both my posts. I already told my husband tonight if the pain, nausea and chills continue I'm going to the ER tomorrow. My primary "provider" (who is a NP) is refusing to give me anything other than Flagyl at this point. It's Day 6 and I feel just as bad as when I started it. The "help" that she promised to give me finding a GI specialist who would take me in consisted of her giving me a referral...and they can't get me in for weeks. I'll bet if she or any of her family members had this she would have a much more vested interest in getting rid of it.

NanciT
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Re: First Time C Diff and Very Upset With Doctors

Postby NanciT » Thu Jul 30, 2015 12:07 am

Please do go to he ER especially if you are unable to take in fluids. This occurred with me several times when first diagnosed with CDIFF. My experience involved a great deal of vomiting with CDIFF so I was sadly in the ER alot but the hydration helped me a great deal.
I made sure the water I was drinking had electrolytes(Smart Water). If you are dealing with nausea, try Sea Bands. I used them a great deal and still have days Post CDIFF that I use them, you can find them at any pharmacy.

I understand your frustration with seeing a PA and not the GI you had hoped, I would insist on getting in with the doctor asap but go to the ER if pain and difficulty taking in fluids continue. Make sure to tell them in the ER you went to see the GI and saw the PA. Give them the GI's name, they will often call. You are still his patient.

I have been completely frustrated with the medical community, and I also work in Healthcare. The lack of education with CDIFF and medications using to treat it has made me very angry. I have seen 4 GI's, 2 of which I really had to push for the medication I needed and did my own research. It is terribly sad when you are feeling so ill that you have to try and advocate for yourself, there were times I was not able to do this.

Follow through and go to the ER if you continue feeling poorly, then get in there to see the GI. I have made it clear to all the nurses I have come in contact with through this that this is NOT just diarrhea. I tell all of them more education is needed. I will admit I knew very little about this before I was diagnosed.
I do hope you feel better soon, keep us updated

notheidi
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Re: First Time C Diff and Very Upset With Doctors

Postby notheidi » Sun Aug 02, 2015 11:14 pm

I'm sorry your contact with your medical professional was hurtful on so many different levels!

It makes me mad when providers who appear to have little experience treating c diff glom on to a "rule" of treatment and cling to it with all their might, despite evidence that it isn't working.

Consultation is the standard of care, so even if you can't get in to see a GI, your provider should at least be taking the initiative to call her favorite GI for ideas. [Of which I'm sure a different treatment strategy would be one!]
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize

rocky726
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Re: First Time C Diff and Very Upset With Doctors

Postby rocky726 » Thu Aug 06, 2015 10:16 pm

Nanci, you are so correct when you say to go to the ER when our primary and "specialists" fail us leaving us in pain...dehydrated from the diarrhea...exhausted because any position to try and sleep is uncomfortable and about a half dozen other things I can think of.

I did go to the ER on July 30th. They switched me from Flagyl to Vanco which, of course, my primary refused to do. They gave me a script for 30 Norco pills and some more Phenergan.

Fast forward to today and I remain in pain along with diarrhea, poor sleep etc. without any relief from the Vanco. I went to another potential primary and let's just say I won't be returning there. We're about 1 1/2 hours from a major city so it's pathetic at the "selection" of doctors around here. I will, however, keep going to different primaries until I find one that's at least somewhat competent.

I went to a different GI specialist yesterday. He told me to take one Vanco (not two as the ER doc prescribed) four times daily. I have a colonoscopy scheduled for September 10th. He listened but he really didn't do anything. He said I had to have "10-15 watery stools" a day in order to have C-Diff. Well, for the two months I've had this, I can assure you I can count on one hand how many times that has happened. I was even constipated for 5 days straight at one point! The kicker is that he is one of the major city doctors. It took me over two hours to get there. I'm not even sure what heck I was expecting. I wasn't expecting a miracle cure but I wanted some sort of understanding.

I remain out of work, unpaid. I can't even imagine the chaos the darlings I work with have done with my paperwork. I also cannot fathom how I could possibly work when I barely have enough time to run down the hall at home when my diarrhea kicks in.

I just feel very alone, isolated and confused at this point. Every single person except the 1 out of 4 ER experiences I had were met with the attitude of, "It's just C-Diff It's becoming more and more common nowadays."

NanciT
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Re: First Time C Diff and Very Upset With Doctors

Postby NanciT » Thu Aug 06, 2015 11:36 pm

Rocky.

I am so sorry you are having such a terrible experience with doctors, both primary and GI. I will be honest, I have also had a terrible time with 2 Gi's , one I knew for many years and the other highly recommended. I want to say it depends on the location where you live but once again I am near some major hospitals and will also tell you I am in healthcare myself. It has been unbelievable to me the lack of knowledge in some cases mine included.
I just have to tell you to find a new GI. Your GI should be seeing you through this illness. It sounds like you have made a great effort to do this but if you are told you must have 10-15 WD a day to call this CDIFF, you need to move on. Have you looked at the list on this site of MD's that do FMT's? There may be one near and the doctor I found on this site was by far the most knowledgeable. Please check that out. The next step would be to ask if you have a friend that is a nurse or in healthcare. They will often give good advice on who to see. Before I went to my current GI, I called up and asked if they saw patients with CDIFF and I was told they had many. I am so happy I made that change, it took months but I finally feel supported. Some are lucky have great GI's and ID's at the start, I was not and you are having a tough time.

I hope you re able to find another GI, you did not mention how long you have been on Vanco but it does take time. I was on it for a week before I saw improvement. At first I was on it for 10days, then I was put on a pulse taper for 3 months. I started to feel better on the Vanco but I did have some abdominal pain throughout, nausea and trouble eating. I used a heating pad daily which helped, I used "Sea Bands" for the nausea which help and I kept my diet limited. The only other medication I took was Alleve gel caps twice a day which I am still on. I also take VSL#3 and have taken that throughout, spacing it out to take hours after the Vanco.
I do hope the Vanco starts working soon, if you must return to the ER then I would do that. While there, you could ask the nurse what GI they might see? I spoke with everyone I could throughout. I understand so many will say" its just CDIFF" my first GI told me " most recover in 10 days". Thats when I changed doctors.

Sending positive thoughts your way things will improve for you soon!! You will get better, give the medication some time to work

Nanci

Bobbie
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Re: First Time C Diff and Very Upset With Doctors

Postby Bobbie » Fri Aug 07, 2015 12:47 am

Rocky,
Follow NanciT's excellent advice.

"just c diff" my a....! May anyone who says this have c diff descend upon them.

I, too, had a terrible time with doc's at first, but the more I learned, the better I got at being my own advocate. My blood pressure still soars when I enter a doc's office, and the word "antibiotic" still makes me nauseous, and I've been familiar with c diff for a long time.

Best of luck. Keep us posted. You will overcome this.

AllisS
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Re: First Time C Diff and Very Upset With Doctors

Postby AllisS » Fri Aug 07, 2015 11:03 pm

I've found GI doctors to be some of the absolute worst communicators among the different specialties. I've lost track of the number I've seen over the years for GERD and IBS, as I kept switching (to a chorus of criticism from my PCP, the GI drs. themselves, etc., that I was "doctor-shopping") in the mostly futile hope of finding one who wasn't condescending and arrogant. Eventually, I thought I'd found such a GI dr.; I saw him regularly for about ten years. However, three years ago, when I had C. difficile, I again had to switch, as the dr. was "too busy" to see me himself and pawned me off on his NP, who scared and overwhelmed me with a lot of inaccurate information. I was fortunate to find a C. difficile specialist in the city where I live. While he wasn't easy to talk with like my former GI dr. had been, he seemed to know his stuff.

As for the criterion of how many D episodes per day you're "supposed" to have in order to merit being tested for C. diff, I believe that's increasingly being departed from, as the more common the infection becomes (and it's now reached near-epidemic levels) the more varied the clinical presentation. My very elderly mother was just tested for a possible C. diff recurrence since she tested positive last year. This time the result was negative. However, both times her D episodes fell into a pattern of several times per week vs. per day. Her GI dr. isn't in a major city, yet evidently he is familiar with the infection manifesting in different ways.

It's extremely hard to advocate for oneself when you feel very ill even if you're normally assertive. There's a new field springing up of patient advocacy, though the people filling this role tend to be fairly expensive. But even just having a family member or friend accompany you to medical appointments and sit in on the consult, taking notes, asking questions, etc., could be helpful.

Allison
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

Bobbie
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Re: First Time C Diff and Very Upset With Doctors

Postby Bobbie » Sat Aug 08, 2015 1:22 pm

Agree with assessment of many doc's. I went to a GI for over 15 years. When I developed my third case of c diff, he said he could no longer handle my case because, "it is too complex." I had to scramble around and get another GI - had a horrible colonoscopy and went on to a third GI. He is competent.

I still have IBS and acid reflux. Doubt if I will ever be "normal" but do have good days.


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