Just had my 3rd baby! But now I'm back and so very discouraged

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Ygy
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Just had my 3rd baby! But now I'm back and so very discouraged

Postby Ygy » Sun Jun 10, 2018 1:03 pm

Hi everyone,

I'm a 32yo otherwise healthy and active mom of 3 amazing girls:)

Now I'm 2 weeks postpartum and have a positive cdiff test and classic symtoms! I had a csection and got a dose of IV vanco and a two day hospital stay. Those were my only risk factors. My previous 2 csections I had no problems, so I'm very confused as to why this time was diffrent I will be picking up Dificid tomorrow bc it needed to be ordered.

5 years ago with my first pregnancy I contracted cdiff from a sick coworker( I'm an RN,but I no longer practice bc I was too scared to go back). I took a 10 day vanco course and was feeling better on day 2. No other issues, probably bc I got it diagnosed very quick, probably 5-6 hours after my first symptoms (which were very extreme and classic).

Fast forward to 9 months ago. Took Macrobid for a UTI and loaded up on Florastor. Still 2 weeks later I had very mild symptoms which my GI almost assured me wasn't Cdiff but IBS. Mild symtoms continued for a 6 weeks and I asked for a test. Came back positive. Treated with vanco for 10 days. Relapsed on day 10. Did 6 week vanco taper and was not back to normal at week 4 so my ID doc ordered Dificid. Felt better on day 2. Still some food sensitivities but no terrible after effects. Now I have extreme anxiety and I think ptsd from the situation.

Now here I am trying to focus on my new sweet baby girl and cdiff hits me again??!!!

I'm so sad, mad, anxious and depressed. I know God will give me the strength to get through this but I still don't want to go through it. I'm starting to feel like I'm never gonna be free of this awful disease. I will always have to live in fear of having to take antibiotics or visiting people at the hospital or even taking my kids to the doctors. I'm just so discouraged. I'm like a shell of my former self. I used to be young and fit and attractive and for the most part carefree. I feel like cdiff has stolen so much from my life! Today is my 5 year olds dance recital and I'm too sick to go. I was holding back tears helping her with her hair and makeup. I try so hard not to cry in front of them bc they worry and get upset too.

Just praying that the Dificid cures me the first time. Also praying insurance pays for it. With insurance it's $1000 but without its $4000. Thank the Lord we can afford it. And thankful for a loving supportive husband and family and friends.

Thank you all for reading

beth22
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby beth22 » Mon Jun 11, 2018 1:22 am

I'm so sorry that you have to go through this again. I tested negative for years and then had a hospital stay in 2016 and 6 weeks later was also positive. My symptoms were mild though and the D cleared up, so I did not treat. However, I still test positive on PCR. I had antibiotics and GI thinks I got colonized at the hospital during my stay.

I find that sometimes my symptoms flare up when I am very worn out and my body is taxed. Perhaps the surgery did the same for you. Many have reported very good results with the Dificid. Check with your doctor about nursing while on it. Hopefully, this will kick it again for you. IV vanco is not implicated in giving c diff recurrence, so unless you were also given a different antibiotic, that should not be the cause.

Good luck and congratulations on the new baby!

Ygy
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby Ygy » Mon Jun 11, 2018 9:11 am

Beth22,

Thank you for your reply:). I checked and Dificid is ok for breastfeeding which I'm very thankful for!

I'm at a loss for what caused the cdiff again:(. I was so careful and bleached wiped the heck out of everything. But I didn't have much control over the operating room obviously lol. I brought outside food and asked all medical personnel to wash hands and glove up.

However I spoke with my ID doc at Mayo Clinic and apparently any antibiotic even IV Vanco pose a very minimal risk. I got Cdiff on Macrobid so I'm guessing I'm very sensitive.

I'm very disheartened bc I've been taking probiotics religiously and I'm still very careful with cleaning and disinfection and hand washing.

I'm now strongly considering an FMT. I'm only 32 and I'm otherwise healthy and love running and dancing and traveling and playing alongside my family. I've found the worst part about cdiff is the constant fear and anxiety that I've experienced. And now with this 3rd cdiff diagnosis I find myself depressed. I often wonder at what a different mommy I would be if I wasn't so concerned about germs and so strict with hand washing. Hopefully one day they'll understand it was out of love and a desire to protect them.

Thanks for listening:)

roy
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby roy » Mon Jun 11, 2018 10:46 am

Double check if it's ok during breastfeeding.
It was fast tracked and although it "should" be safe it has not been studied in humans to see if it passes to your breasfeeding baby.
There has been no information to say "yes its definatley ok"

I dont know if your lucky or unlucky that your earlier Dr was willing to order a c.diff test without the copious watery D (that another RN poster on here described as "an involuntary waterfall flowing from my butt").
If a patient presents with symptoms that do not indicate c.diff the guidelines say dont test as a positive result might be colonization and not a disease.
They also say do not test to see if its gone as that results in overtreating just because of the test result.

Lisa33
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby Lisa33 » Mon Jun 11, 2018 1:12 pm

I had c-diff in 2014, and it definitely turned me into a germaphobe mommy as well. I'm not quite as obsessive with protecting ourselves against germs as I was then, but I am still an obsessive wiper and handwasher. My daughter was 3 at the time and is now 7 and willfully goes along with my hand washing rules, but does make fun of me sometimes. She is used to my germaphobic behavior now and understands why I do it. Don't beat yourself up about any of your feelings. They are all completely normal and unfortunately something that this awful illness leaves us with. Fear, worrying, anxiety and depression all come with c-diff, especially after relapsing. I hope the dificid knocks this thing out once and for all, and you can recover and get back to all of the things that you love to do with your family.

Ygy
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby Ygy » Mon Jun 11, 2018 1:48 pm

Roy,

Thanks for your reply. I'm planning now to pump and dump and feed my baby formula until the drug is out of my system.


I did have classic symtoms this time around with WD 4 times on Wednesday and then I made the mistake of taking Imodium. On Thursday & Friday I no longer had WD but I still felt awful. On Saturday & Sunday the WD returned with other tmi symptoms.

I'm an RN, my husband is an ARNP, my two sisters and mom are also RNs and my father is a physician (he is a GP and has treated many patients with CDI. but since I've struggled with this he has learned that much more and is invested in seeking new info on CDI)

We are a very knowledgeable family who believes firmly in not overtreating with antibiotics. Or any medication for that matter.

I'm well aware of the "classic" symptoms but my ID doctor at Mayo Clinic told me she is seeing more and more patients who present with mushy and frequent stools, and nausea who still need to be treated. Remember that some people have more mild to moderate symptoms and since we are young and healthy our bodies are fighting the infection better than an older or immunocompromised patient. This doesn't mean we don't need treatment, just that not all symtoms are identical.

I suppose I could wait it out and see if I got over it. But first of all with 3 young children I physically can't and it is not a chance I am willing to take. The second time I was diagnosed I followed a similar pattern. I had frequent WD for 5 days and then it cleared up. Then it would reappear, then it would clear up. I let this cycle go on for 6 weeks until I felt I was getting even worse. But once I started the Vancomycin my symptoms almost immediately cleared up and I returned to normal. The cause and effect of that situation shows me that something in my body needed treatment and responded to it. I was tested for a whole slew of other infections and all came back negative but cdiff. Had it just been IBS like my GI first insisted then the Vanco would not have helped my symptoms. I'm just glad I had the good sense to not take the Levsin he prescribed and end up with toxic mega colon. I wish I would've listened to my intuition and gotten tested and treated at the first sign of infection. I believe I relapsed and afterwards had so many food intolerances bc the cdiff was wreaking havoc on my GI system for 6 whole weeks. I firmly believe that my first infection did not affect me afterwards bc I sought treatment so quickly. Also I would never and will never retest to make sure I'm "cured". I will probably always have a positive PCR bc of how many times I've been through this. But the EIA will only be positive if you have an active infection.
After my second infection I had a few "scares" but they always resolved the next day. I can now tell the difference between a bad day and problem that is not going away.

You seem to have so very rigid views on what constitutes a "true" cdiff infection. I have called the cdiff foundation and they told me that 3 episodes of WD in a 24 hour period and another risk factor qualifies as a reason to test for cdiff. We all know how complicated this disease is and that it can present a bit differently for everyone. I only hope that others on this group listen to their ID/GI doctors and their own intuition, Instead of taking medical advice from someone on a discussion board.

Ygy
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby Ygy » Mon Jun 11, 2018 1:52 pm

Lisa33,

Thank you so much for your kind words and encouragement :). My daughters are 5, 2 1/2 and 2 weeks old. My 5 year old is a champ at handwashing but my 2 year old not so much:/ lol. I bribe her with jellybeans and that usually works:)

I'm so glad you've been well for so long and I pray you never have to deal with this nightmare again. Best wishes to you and your sweet girl!:)

roy
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby roy » Mon Jun 11, 2018 2:09 pm


roy
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby roy » Mon Jun 11, 2018 2:29 pm

And just to add that if the host immune response (or lack of it) ignores the toxins even an EIA test does not mean treatment is automatic.
The much awaited vaccine will halt the immune response (same as in clostridium tettani) natural immunity does the same.
Patient still tests positive and still has toxins but does not become sick.
I present facts, not give advice.
I hope dificid clears your problem, it's very narrow spectrum and allows the good flora to recover to complete the "cure".

Your probably also aware that your baby is likely to carry c.diff and that it's not unusual, most babies carry it.
It might even give them stronger immunity in later life.
It's a good excuse to tell your husband he is on diaper duty for the next few weeks.

beth22
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Re: Just had my 3rd baby! But now I'm back and so very discouraged

Postby beth22 » Tue Jun 12, 2018 1:24 am

If I had your symptoms, I would treat as well and it would be with Dificid. I have a bottle of it here that I was prescribed after the 2016 hospitalization when I tested positive. I was traveling abroad and took it with me in case things got worse, but I think being on vacation and feeling relaxed helped quite a bit and I did not need it as D did not return. You will be taking care of a newborn and will be very tired and your body is still recuperating. That means you will not have much chance to rest. Hopefully, the Dificid will do the trick for you, but if not, FMT is always an option as well. That was what worked best for me.

Good luck to you and let us know how it goes. Hopefully, you can post in the success column!


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