The relapse

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DrMike
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The relapse

Postby DrMike » Wed Aug 09, 2017 2:12 pm

I'm so confused. Within 6 hours of starting DIFICID I started to improve. Yesterday, I had a formed stool after lunch, but then before I left work I had more D. On my 45 minute drive home I felt like I had to go again. Of course the pharmacy was closed by the time I got there so I missed my DIFICID this morning but last night I had to go three more times before finally giving up and going to bed.

It woke me up at 1 and as I sat on the toilet once again trying to wrestle with my bowels, I broke down. IBS shouldn't be making me lose weight or waking me up in the middle of the night. It's unrelenting and debilitating and I don't know what it is.

This morning I had to go three more times and it made me late to work. I'm on the toilet now between patients. Great news: the lab threw away my stool samples because they weren't in an approved container. Thanks, guys.

With all my medical education, and having failed flagyl, vanco, and FMT, am left to wonder: am I relapsing on DIFICID? Is this some novel hypervirulent strain that is incurable? Will I ever recover? Is my life over?

I'm just so tired of it.

Bobbie
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Re: The relapse

Postby Bobbie » Wed Aug 09, 2017 4:55 pm

Dr, Mike,
You've had c diff for approx a month. Many of us have had it for much longer - for me, it's been since 1993. My son had it in 1979. I was 52 when I first developed it and 76 now, the c diff has helped leech my bones and I've had 5 broken bones but I take aerobics 3 to 4 days a week. Beth also has had c diff and other problems for a long time -- NancyT and Georgiana (3 years) plus others on the site.

If we can get through this, you can, too. Being a doc, You have resources we don't have.

Once again, pls, no blow by blow bathroom accounts or put it in TMI.

I am concerned about your patients and if you are "catchy."

Not "putting down" your anguish. I have days when death looked good to me -- and days when I was glad I was still alive. After months of feeling good, I am having GI problems again but think it is IBS -- possibly what you have. We will continue to support you. Think of us as your c diff family.

This is "not in your head." C diff can affect your body and your mind. I eventually went to a counselor and got anti anxiety meds so I can sleep at night. I do not need them during the day.

You are young and you will survive. Whatever eventually works for you will take time. When my son and then I had c diff there were no support sites. My husband was usually out of town. I was alone - except for a few good friends - and terrified.

Take a deep breath. Patience, patience. I promise you will recover. Call your mom.She will reassure you.

DrMike
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Re: The relapse

Postby DrMike » Wed Aug 09, 2017 7:40 pm

I stepped on the scale before I left the office today. In the last month I'm down 12lb 8oz. Without even trying. I have *NEVER* in my life lost weight without trying. I'll gain weight walking past a pastry shop.

My husband called Dr. S today in desperation and now Dr. S says he thinks I don't have C. diff. But he doesn't know what I have. Meanwhile, I had to cancel my patients today and leave work.

The problem is that there is no way to prove I have C. diff now unless I'm really failing the DIFICID (which we picked up and I'm back on). I got the stool collection kits from my clinic and I'm going to resubmit them tomorrow. And then I came home and hugged my dog and sobbed. I sobbed and apologized to her if I'm not able to provide for her like I promised her I'd do when she was a puppy. I sobbed and mourned the loss of the life I had before July 5th. I sobbed because I failed today as a physician. And I sobbed because once again, I have to poop.

I'm waiting on Dr. S's call back. I'm going to ask him to admit me. I need an answer.

DrMike
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Re: The relapse

Postby DrMike » Wed Aug 09, 2017 8:43 pm

Vanco 500mg PO QID plus fidaxomicin 200mg PO BID.

Die, motherf*cking gram-positive anaerobes.

DIE.
Last edited by DrMike on Wed Aug 09, 2017 8:44 pm, edited 1 time in total.

DrMike
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Re: The relapse

Postby DrMike » Wed Aug 09, 2017 9:29 pm

I'd feel alone if not for you guys. Nobody in this very experienced GI doc's life has ever failed the course of treatment I just failed.

That is a very special, horrible kind of alone. Thank you, Bobbie and those who created this board for having created it.

DrMike
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Re: The relapse

Postby DrMike » Thu Aug 10, 2017 1:57 am

You have to realize I haven't eaten a single leaf of anything in two weeks. He put the stool into the cecum, where it's supposed to go, so SIBO is unlikely. The idea that I'd suddenly go from zero to IBD in an hour on July 5 strains credulity more than a resistant strain of C. diff. I've also had an extensive immune workup in the past including immunoglobulin subclasses and all of my Igs are in normal ranges.

So let me go over how doctors think about a problem like this. We do what's called a differential diagnosis. So let's break this down by etiology, since that makes most sense here.

INFECTIOUS: C. diff (Duh) campylobacter, shigella (which should have resolved by now), E. coli (should have resolved by now), entameba (should have responded to Flagyl), Giardia (should have responded to Flagyl) norovirus (should have resolved by now). SIBO is unlikely because no bacteria were introduced into my small intestine and this was done by an experienced gastroenterologist and pioneer in the field who knows what he's doing.

We're getting new stool samples but a negative test for C. diff toxins is noninformative.

IFLAMMATORY: Nothing fits. Any sort of inflammatory bowel disease should have been seen on the colonoscopy done not even two weeks ago by one of the most respected gastroenterologists in the Bay Area. The other thing is that the clinical picture doesn't fit. At 6PM on 5 July 2017 I was happily eating sushi in a restaurant in Santa Barbara, checking out the cute college boys at the next table with my husband. At 7PM that same evening I was in the ED with fever and diarrhea. That's not how IBD starts. Also, IBD starts in young adulthood or in older adulthood, not at 40. This started three days before my 40th birthday. Happy birthday to me, huh?

NEOPLASTIC: There are a few neuroendocrine tumors that can cause diarrhea and facial flushing. I don't have facial flushing and this kind of diarrhea doesn't fit. There was no sign of a tumor on my colonoscopy.

FUNCTIONAL: Under international criteria, the presence of unintentional weight loss and fevers/chills excludes the diagnosis of IBS.

DIETARY: Other than the first day, my diet has consisted of bland white starches, chicken, and I think some shrimp once (I'm not allergic to shrimp or any food).

So there we are. It keeps coming back to Diffy.

beth22
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Re: The relapse

Postby beth22 » Thu Aug 10, 2017 2:47 am

Have you checked your pancreatic enzymes? I have had chronic pancreatitis that started after I treated and after FMT. Some people have had problems with their liver. It might be worth checking.

TowerL
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Re: The relapse

Postby TowerL » Thu Aug 10, 2017 7:59 am

I'm sorry you are going through this Dr Mike. I'm no expert, but did not feel completely cured after Dificid. The time during was horrible and I often still had bad bowel movements. What I can say is complete the treatment. It took 4 months post last treatment before I felt normal again. I was still on probiotics three times a day (lifesaver). Another 2 months to wean off the probiotics and be who I was before.

It's not an easy road and e medicine doesn't always immediately stop symptoms. But in time it should. My doctor said unless you have D more than twice in a day leave it be once we completed treatment.

NanciT
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Re: The relapse

Postby NanciT » Thu Aug 10, 2017 10:25 am

I think part of the issues is physicians do not know MUCH about this illness. I do have great faith in Dr. S, I saw him and he was the only GI who understood how debilitating and difficult this nightmare is to get rid of. There is much the medical community does not know about this illness and the different strains out there. I have wondered if those of us who are in healthcare are more difficult to treat? I could NOT get rid of this and actually after losing over 30 lbs( and I am average size 6-8 female) I thought I would die.
The entire time I was on Dificd I felt very ill. You have mentioned Dr S does not believe it is active CDIFF right now? Every case is different as we see on this site.
Sorry you are going through this, wish I had an answer for you

NanciT

DrMike
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Re: The relapse

Postby DrMike » Thu Aug 10, 2017 12:33 pm

We just proved to Dr. S. that it's C. Diff.

Because it's now been 15 hours since I went. It might be stopping, but I won't celebrate prematurely. I've had too many false dawns. I've been crushed too many times. We just need to keep it that way until the next FMT, let my mucosa heal.

Let me live a bit of life off the toilet.

amg
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Re: The relapse

Postby amg » Thu Aug 10, 2017 1:14 pm

I'm so glad you're feeling better.

Have you been drinking kefir? Some evidence points to this as being helpful in preventing further recurrences, and Dr. Colleen Kelly is a c diff expert who highly recommends kefir as part of the treatment plan . My daughter drank it every day during her Dificid taper. And she ate Bubbies natural probiotic pickles. The Dificid taper was her ultimate cure and she's been c diff free for 9 months.

http://www.managedhealthcareconnect.com ... -infection

Hang in there. You will beat this.

beth22
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Re: The relapse

Postby beth22 » Thu Aug 10, 2017 4:48 pm

If you try kefir, just take a small amount to see how you react. It sends some people to the toilet all day. I do not tolerate it well at all and my GI told me he gets cramping and D from it and he has not had c difficile. If you tolerate it, that would be a good thing to do as amg suggested.

DrMike
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Re: The relapse

Postby DrMike » Thu Aug 10, 2017 5:29 pm

So in spite of the fact that I'm feeling better, I started to feel a bit feverish.

And then I looked in the mirror. There is a subtle red rash across my face and upper arms.

I'm getting Red Man from PO vanco! Because OF COURSE I am! ROTFL! What do? NOBODY in the world knows what to do now!

cdiff454
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Re: The relapse

Postby cdiff454 » Thu Aug 10, 2017 6:06 pm

I thought it was very rare for oral vancomycin to cause red man syndrome, as in few cases ever reported. Are you still on Vanco despite also taking dificid? If it's actually red man from oral use perhaps you are a candidate for a journal paper? I got something that looked superficially similar to red man once while on extended moxifloxacin but wasn't technically red man syndrome.

amg
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Re: The relapse

Postby amg » Thu Aug 10, 2017 6:13 pm

Oh, you're having a tough road. I'm so sorry. :( All is not lost, though! You still have Dificid, which you seemed to respond to quite well. It is possible that you just didn't stay on a long enough course last time to allow your own flora to rebuild and for it to take care of enough spores. The vanco harms much more of your own good flora, so maybe just being on Dificid will be better for you in the long run against further relapses.

It seems the approach you want to take is nuclear - blast the c diff out immediately and go instantly back to normal. That happens for some people, but for most, especially those who've had relapses or who are a bit more complicated in their medical situation such as with autoimmune issues, the road to recovery can be a bit longer and more gradual. That's why I've been hyping the Dificid taper. It gives you time to heal and time to rebuild your gut flora.

You will get through this!


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