29 yr old F recurrent c diff

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Zapper
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Posts: 148
Joined: Thu Feb 11, 2016 10:28 am

29 yr old F recurrent c diff

Postby Zapper » Tue Jul 18, 2017 1:45 pm

I figured it was about time to submit a case history and updates. I really should have done this sooner as I have a terrible memory now (brain fog) and forget certain details of my recovery.

The beginning: I woke up in the middle of the night late October 2015 with a severe UTI (peeing blood and pains). When to ER and was "flushed" via cathetor and prescribed 5 days of Cipro. About a week after finishing the Cipro I was not feeling well. In the past I've had IBS issues so the 1st few days I thought it was just a stomach flu of some kind.. then I knew something was wrong when all I could expel was mucus. First 2 trips to Urgent Care were failures.. overlooked as I was a 27 yr old female with no prior medical issues. Was told twice it was the stomach flu and prescribed a stronger antidiarrheal. It was only a few days after that when I ended up in the hospital severely dehydrated and septic. I remember how painful it was when they couldn't get an IV in anywhere.. tried arms.. hands.. neck and nothing. I finally got a stool sample submitted and was told I was positive for both A and B toxins for c diff. I work in healthcare and very aware of what c diff was and was absolutely devastated. I had no idea recovery would end up being so difficult.
I was prescribed Flagyl and only made it 4 days before I was hospitalized again. Switched to vanco and did a complete turn around. I felt good again. Started eating and thought I was cured. Shortly after completing treatment it was back.I believe I relapsed 4 times before my colonoscopy. I completed a colonoscopy Dec 24th 2015 with no result.. no sign of infection or irritation. However, they did confirm iGA deficiency. ID and GI still unsure how this affects my c diff recovery.
I was put back on a 3 month vanco treatment that also failed in Feb 2016. During this hospital trip I learned I was pregnant. My ID advised the safest route for my baby was to take 2 250 mg vanco tabs my entire pregnancy to keep myself from relapsing. I did this and had an amazing pregnancy. I did deliver my son 3 weeks early but I do not believe it to be related.
I tapered off vanco after postpartum and relapsed within 2 weeks again. This put me in a severe depression. Finally scheduled an FMT with a donor from OpenBiome for April 2017 and felt pretty positive. The day before the FMT I knew something wasn't right.. I had a mild fever and diarrhea. GI still wanted to move forward. 2 days after FMT I was hospitalized for 4 days I did not have c diff but contracted Norwalk virus. A few days after returning home c diff came back and I received my positive result. This time I wanted the most aggressive and effective treatment. GI agreed to 10 days of dificid with 2 days no antibiotics then followed by an FMT with a different donor. The first week after the 2nd FMT I did feel different. Barely ate anything as I was terrified to upset the gut flora. Once I started eating again by the 2nd week I've noticed some SUBSTANTIAL food intolerances. I have added little by little to now I have more than 10 items I can eat. But just last weekend my life got shook up again. 7 weeks post FMT and back in the bathroom 20+ bms with mucus only and the "smell". I cried for hours. Called my GI and agreed to complete a stool sample to confirm. The next day I felt better.. formed stools but still pain and mucus. Now today I feel ok.. only 1 bm and pains. The abd pains might be from my anxiety being kicked into overdrive at this point. I am awaiting my strol sample result. The brain fog never left throughout the whole ordeal. Sometimes I can't even formulate sentences. It's so frustrating.
I have lost count of my relapses at this point. We can only assume it's recurrent c diff and possibly vanco resistant. I really hope this isn't c diff again but almost hope it is in some strange way... at least to know my food intolerance and pains have not been just "recovery".
I honestly don't know which is worse. I know I can't continue to take vanco or dificid for my life... but to have the memory of taking it daily for the pregnancy and feeling so normal again is something I wish I could go back to daily.


Received the negative result a week later from the c diff test. Which is good news for once but still not feeling normal. Still having several bms in morning and throughout day. Still unable to expand from my bland diet. GI prescribed viberzi but unsure if I should take at this time. Also said daily Imodium and pepto would be acceptable as well. I am starting on the Imodium pepto mix today and hoping it helps my pains and frequent bms. The strange thing is it's not always D. Most days they are pretty formed but very very frequent (5-8 daily). Very life disrupting and all. Starting my new job this week which is stressful enough as is. Starting to think it was a bad idea to start a new job when there is no sick leave for 90 days. Hopefully I can make it.

Kmillion
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Posts: 3
Joined: Tue Oct 18, 2016 3:04 pm

Re: 29 yr old F recurrent c diff

Postby Kmillion » Tue Aug 08, 2017 7:50 pm

Omg! I'm so sorry to hear you went through all that! I'm glad that your C-Diff test came back negative, and hoping this battle is over for you! When I tell somebody what C-Diff is, I say that it's something I wouldn't wish to anyone to happen. So I completely understand what you went through. So glad, that your pregnancy went well! Congrats and good luck with everything! Hoping it will never bother you again!

Zapper
Regular Contributor
Posts: 148
Joined: Thu Feb 11, 2016 10:28 am

Re: 29 yr old F recurrent c diff

Postby Zapper » Thu Aug 10, 2017 9:08 am

Kmillion, please see the rules on case histories and commenting.

Zapper
Regular Contributor
Posts: 148
Joined: Thu Feb 11, 2016 10:28 am

Re: 29 yr old F recurrent c diff

Postby Zapper » Thu Aug 10, 2017 9:12 am

12 weeks post FMT and feeling better. Unfortunately any one I try to expand I am left with pains/unpredictable bms/mucus/etc which is very frustrating. I have added daily Imodium and pepto to my routine per GI advise to try to get back to 1-2 bms daily.
Every now and then I have a bad day (like today) where there is no food trigger but still having upset stomach and using the restroom 10+ times in the morning.
Sometimes it feels like I was left with more problems post FMT than before... but obviously that is an incorrect statement and c diff was worse.
Hoping as the weeks go on I can get to a better place.


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