Dr. insists no testing w/out D?

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speg
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Dr. insists no testing w/out D?

Postby speg » Tue Nov 05, 2019 8:23 am

35 F positive stool test October 2019 - 8 weeks postpartum:

Hello - I was diagnosed after a long stay in the NICU with my now 8 week old baby & IV antibiotic during labor. It was easy to play off what were probably early symptoms due to, well just having had a baby! Eventually after being sent home things got more 'urgent' and then suddenly the M showed up (scary) followed shortly by WD and pink/orange M for days, when I gave in and went to my Doc after having lost 20 lbs from my prepregnancy weight. Of course I tested positive, baby wards are nasty places & I was run down from our crazy situation + had the nasty antibiotics.

I had 10 days Vanco, despite asking for Dificid and being declined due to Insurance not covering it and Doc feeling Vanc would do the trick. By day 2 treatment felt pretty well. Still felt good around day 8 post meds. Day 9 --- formed but M (freaked me out). I went back in to the doc who sent me on my way with a collection kit & instructions to "wait until D" to collect. It's been a week now w/ zero consistency. No WD (or even D), no true urgency yet. I have had days w/ no movements or M, days with formed and no M, Formed + M, days with just M-- all over the place, but lots of M is showing up (and off and on it's pink/red'ish in color w/ no bowel matter at all). Called doc. still insists I wait for D. I have a newborn preemie at home demanding feeds every 2.5 hours and am pumping/breastfeeding so "do you feel ok" is not exactly a question I feel qualified to answer any more :( No fever, but have lost weight over the last week. Have been eating 3 meals a day + snacks of yogurt/berries, small oatmeal cookies, gluten free pb toast throughout the day. I have been trying to keep it somewhat bland although I haven't totally ditched sugar (I have been having watered down gatorade throughout the day, but not exlcusively & 1-2 cookies a day as mentioned). I guess I could try going blander w/ less sugar, but really worried Doc is missing something because I have no D symptom. Yesterday great normal 1x a day formed. This a.m. blood tinged M with nothing else.

Anyone deal with M or bloody M off and on w/out D post first treatment? I know this is a highly individual disease, but bloody anything from that area seems scary to me. 22 days post last day vanco/ first treatment. Lost, worried and waiting for D, doctor offering no information other than "if D is gone you're cured" ... How long is too long to wait w/ M, but no D?

speg
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Re: Dr. insists no testing w/out D?

Postby speg » Tue Nov 05, 2019 9:54 am

Sorry I miscalculated (days are sorta running together lately) I'm 17 days post last vanco.

roy
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Re: Dr. insists no testing w/out D?

Postby roy » Tue Nov 05, 2019 1:08 pm

Your Drs a keeper!
The only indication that c.diff is gone is the D has stopped.
No test can say it's gone and tests should NEVER be done if you dont have D.

speg
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Re: Dr. insists no testing w/out D?

Postby speg » Tue Nov 05, 2019 1:29 pm

Thank you Roy!
I do trust my Dr. and FNP who have been handling this, as my OB totally dropped the ball and let me linger for weeks. They hopped right on testing/treatment as soon as I walked through their doors. Still wish they'd taken the Dificid request to heart now I'm reading it makes a much better first line treatment :( but none the less I will try to be more patient with myself and the process. Having never had a serious illness before, rarely taken antibiotics in my life, let alone having had to stay in a hospital off and on for 21 days this has all been nerve wracking to me, especially since I was given so little info. on what I might see moving forward from treatment.

New mantra No D -- No Test -- No Treat, and try to stay healthy in the interim.

Bobbie
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Re: Dr. insists no testing w/out D?

Postby Bobbie » Tue Nov 05, 2019 1:35 pm

speg,
Welcome to the site. Pls read the first forum if u have not already done so.

Agree with Roy. Chill and wait for your body to "right" itself. It has been through a lot - pregnancy, childbirth, and now c diff.

This is the hardest period of c diff. We call it WWW - watch, wait, and worry. See the three day rule for a sort of measuring stick. This is not medical - merely a guidepost of symptoms.

The Three Day Rule: Don't be alarmed by mild symptoms unless you have three "bad" days in a row or if your symptoms become drastically worse. If this happens, call your doctor. Please remember, this is just a guideline to use when you panic after one or two bad days and think, "Oh, IT'S back." The rule doesn't always apply, but what does with C. diff. ? It's a variable and frustrating disease.

Congrats on your baby. So sorry about the circumstances, but it is time to enjoy your child. Boy or girl? Name? Glad u are breastfeeding - best for the baby, more economical, and easiest in the long rerun.

Keep in touch with your docs and keep posting. We've had many new moms and hope one posts to you. You are a real survivor.

speg
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Re: Dr. insists no testing w/out D?

Postby speg » Tue Nov 05, 2019 4:34 pm

Thank you for this I do believe I had forgotten what I've been through in the past 9 months! It all came speeding at me in the last weeks so fast.

Baby boy's name is Leo born 6 weeks and 5 days early, but had a very uncomplicated delivery & NICU stay (required no intervention past the first 24 hours other than a couple days of blue light therapy). They made us stay so he could gain weight & have his tests run by specialists. Turns out there were no deformities or problems they could detect --- he was just impatient! (This might be a pattern for our family hmmmm). It did not escape us how fortunate we were on that ward, where other babies were incredibly sick, very small or under duress from drugs/alcohol use etc.

Ril
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Re: Dr. insists no testing w/out D?

Postby Ril » Tue Nov 05, 2019 5:59 pm

Another congrats on the birth of Leo...and for having found a dr who knows what he is doing.
No testing for cure, and trust that you are cured and on your way to full recovery.
Best wishes,
Rita

D1dad
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Re: Dr. insists no testing w/out D?

Postby D1dad » Wed Nov 06, 2019 8:02 am

I agree you drs a good one. If my own ID doc wasn’t so great I would have had at least 1 more round of antibiotics because I thought I needed them. I followed my docs advice and beat the illness without another script.

Caligirl
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Re: Dr. insists no testing w/out D?

Postby Caligirl » Mon Nov 11, 2019 1:54 pm

Your dr. sounds amazing! After an extremely healthy life, I got kidney stones that were too big to pass during my 3rd trimester of pregnancy. I had to have a neuphrostomy tube put in since they can't blast the stones while pregnant. Long story short, I got C Diff during that surgery. I took 10 days of Flagyl which was HORRIBLE. It came back 3 weeks later after I had to have antibiotics during my labor. The GI that I saw had me take Vanco. It worked well and symptoms went away. Then when I had surgery to remove the neuphrostomy tube, I had to have 1 dose of antibiotics (even though I objected). A week later, symptoms started up again. Oh my goodness I had the worst anxiety (that is when my postpartum depression and postpartum anxiety set in). It was a Saturday, my GI wanted me to get tested on Monday. But the crazy thing is that by Sunday I was feeling better, no diarrhea. I asked my GI again if he wanted me to get tested and he said yes. When I took it in the lab technician was confused because they aren't supposed to accept a formed stool to test for C Diff. The test came back positive but I wasn't having any symptoms. My GI told me that I needed to treat it and that there was "no risk at all to treating it". He wanted me to go on an 8 week taper of Vanco. I literally freaked out and started texting all of my nurse friends and family members. I decided not to take the Vanco. This dr. seemed to over treat (he had me do a colonoscopy after my Vanco treatment just because my iron was low right after I had a baby, which is normal for a couple of weeks). That was at the beginning on March of this year and I have been totally fine since then. I am so thankful for this site and nurse friends that helped me see the importance of treating the symptoms, not the test. I can't remember who it is, but there is someone on here that thinks that they treated it when they shouldn't have and it led to relapse after relapse after relapse. Even though the Vanco kills c diff bacteria, it ALSO kills all of the good bacteria in your gut which you need to fight off future infections. If you take antibiotics when you don't need to (including Vanco and Dificid), it does not set your gut up for success. Praying for you and your baby!! I know how nerve wracking it can be to have a newborn at home during this. Idk where you are located, but I live in the US and ordered germicidal bleach wipes that actually kill c diff (not just like cleaning wipes) and would wipe down the toilet with it after I had a BM. It just helped with my anxiety of having a baby at home.

speg
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Re: Dr. insists no testing w/out D?

Postby speg » Tue Nov 12, 2019 7:49 pm

Caligirl - I also ordered the germicidal wipes with bleach for peace of mind and ease of cleaning our bathroom and kitchen surfaces. I bleached the laundry/bedding right before & every other day during treatment (and continued weekly post treatment trying to tone it down so I don't drive myself mad).

I'm trying to be patient and am working with my Doctor and family nurse practioner who have contacted a GI specialist to weigh in because I am still experiencing a lot of bloody mucus, despite low frequency, no D, and well formed stools. We agreed as long as the symptoms stay manageable, no fever and the D hasn't returned that I'll wait out treatment until we have a chance to investigate other possible issues. Trying to get more comfortable with the "wait and see" approach so that my body has a chance to heal. My energy is much better since treatment for cdiff and generally the bathroom stuff is much better too--- but still concerning to be passing so much M (and B) not sure it's something I'll ever "get used to".

Caligirl
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Re: Dr. insists no testing w/out D?

Postby Caligirl » Fri Nov 15, 2019 1:28 am

Yes the mucus and blood does sound odd. For me it was easier to refuse treatment because I literally didn’t have a single symptom. I’m so sorry for what you’re going through. Are you able to speak to an Infectious Disease dr? It stinks because it’s so hard to know what is a current sickness, what is recovery, and what is recovery mixed with postpartum.

georgina
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Re: Dr. insists no testing w/out D?

Postby georgina » Fri Nov 15, 2019 6:42 am

The bloody mucus is to be investigated.I do not think it can be related to Cdiff since you are not feeling ill , you have formed stools and normal frequency. It could be hemorrhoids or a anal fissure but you should check that out with a specialist.

speg
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Re: Dr. insists no testing w/out D?

Postby speg » Sat Nov 16, 2019 8:00 am

Well things got more complicated (shocker for me -- not haha)

My husband came down with some sort of upper respiratory bug that's hit me like a freight train. Fever, swollen shut sore throat, fatigue (his progressed to include post nasal and now chest congestion and cough)... now what? Just waiting for the D to return which I'm sure it will, my poor immune system just hasn't stood a chance. I do not want to take further antibiotics, and I don't feel safe taking the over the counter NSAIDS deemed breast feeding safe as they are pretty harsh on the stomach to ease cold symptoms. Guess I'll stick to water and chicken noodle soup. I am going to be so skinny by the time any of this gets resolved.

So exhausted!!!! Do other sicknesses often trigger a relapse to cdiff (especially in early recovery)?

Caligirl
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Re: Dr. insists no testing w/out D?

Postby Caligirl » Sat Nov 16, 2019 1:58 pm

I’m so sorry that you are going through this. If I was you I would go to your local pharmacy and speak to the pharmacist. I know that decongestants such as Sudafed can drastically reduce milk supply, but a pharmacist will be able to tell you what is safe to use to try to get better without antibiotics.


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