29 yr old F recurrent c diff

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Zapper
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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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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
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Posts: 202
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
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Posts: 202
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.

Zapper
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Posts: 202
Joined: Thu Feb 11, 2016 10:28 am

Re: 29 yr old F recurrent c diff

Postby Zapper » Fri Sep 22, 2017 3:00 pm

17 weeks post FMT and feeling much better now that I am taking a combination of 2 Imodium daily with 3 levsin tabs (1 immediately upon waking, 1 at lunch, and 1 at dinner).
I still haven't expanded much mainly because I have been feeling better and having normal bms. I've been afraid to say anything to jinx it! I am having 1-2 bms daily. Maybe 3-4 on a bad day but that is a HUGE improvement from the 10+ I was suffering with not very long ago.
My 11 month old son also started sleeping thru the night so I have been more rested as well. It's been such a turnaround since being so ill and not eating / being up all night with a crying baby to now.
I have been thinking about treating myself to a glass of wine since I have unwillingly been sober for 22 months because of this horrible infection!!!
I probably will chicken out anyway.. haha. I have been able to expand slightly back to chicken/fruit/breads. Still can not tolerate dairy red meats veggies and some fruits. I don't drink anything but water and once a month I treat myself to a sprite.
I still fantasize about being able to eat a grilled cheese and salad! My two favorite comfort foods... I am ever hopeful I can get back to a place in life when I can eat those.

Zapper
Regular Contributor
Posts: 202
Joined: Thu Feb 11, 2016 10:28 am

Re: 29 yr old F recurrent c diff

Postby Zapper » Tue Sep 26, 2017 12:33 pm

It is so funny how things start to feel like they are going back to normal then BAM back to dealing with PI-IBS and uncontrollable bms. Took my son to the aquarium on Saturday and ate chicken taquitos (which I have eaten in the past and been OK with) but this was a new place.. unfortunately for me, the aquarium does not allow outside food and after going without eating for 8 hours I couldn't handle it and needed to eat something. Immediately upon eating I felt strange and knew it would be problematic for me. I did OK for the first few hours.. then it turned into a night full of no sleep/running to the bathroom every 30 min-1hr. Now I am back to bland and back to being terrified to expand and try anything more than toast, banana, and rice.
I am on levsin, and also taking 2 Imodium and pepto daily. If I eat ANY veggies I get sick. ANY meat other than chicken and well cooked ground beef, I get sick. Most fruits I can't seem to tolerate. It has been 4 months since my last FMT but about 6 months since I have been able to eat anything substantial and not bland. I am tired of this life. I have kept a food journal since March 2017 and half the time it helps me pin point the issue.. the other half there is really no explanation. Everyone in my life is now getting tired of accommodating me and my food intolerances. I have isolated myself from work lunches/coworkers as they are not understanding of why I can't eat what they bring/etc and I really don't go into detail for my own privacy. I had to leave my old job as the stress and gossip about my condition made it impossible to go in anymore. Now I have a new opportunity, a new job, and still dealing with the same issues.
Whatever happened to being a carefree 29 year old? I have missed out on so much of my son's 1st year of life due to this illness. I have battled some serious depression on and off throughout the whole ordeal. My sex drive is almost nonexistent at this point too.
How does everyone get through this? I am tired of making new posts "venting" and asking questions. I feel like I should know better since I have been dealing with this since Nov 2015.. coming up on 2 years of this nightmare.
Oh well.. my plan right now is to stay bland for another day or two and then slowly reintroduce all the foods I have OK'd and see how it goes.
Where is the light at the end of this dark, dark tunnel?

Zapper
Regular Contributor
Posts: 202
Joined: Thu Feb 11, 2016 10:28 am

Re: 29 yr old F recurrent c diff

Postby Zapper » Fri Oct 27, 2017 11:00 pm

Saw my GI and an immunologist this week. Hi perplexed to say the least why I am still not gaining weigh/unable to expand/in so much pain. Got a referral for an immunologist for my iG issues- basically being told my iGA is nonexistent and they only treatment is a low dose antibiotic for life- which is obviously not an option for me. Awaiting tests in regards to IgG levels.
This week I got hit with a 1-2 punch of pink eye in both eyes and HFM (hand foot and mouth) from my son. I am taking Tylenol and Motrin round the clock to keep my fever at 100 but unfortunately it has messed up my very sensitive stomach and I am wretched over in pain unable to breathe trying to use the restroom for the 10th time tonight.
I am really still in the denial stage of all of this. In denial that this is my life and denial that I will never get back to “normal”. Denial that all I have to look forward to is constant infections and pain and uncontrollable bms. What a life.

I wonder how many people post on this site while in that bathroom in pain. My guess is a lot.


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