New to Cdiff

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ELDPT
Brand New Poster
Posts: 1
Joined: Mon Nov 20, 2017 3:35 pm

New to Cdiff

Postby ELDPT » Mon Nov 20, 2017 6:54 pm

Hello everyone, new here and this is my first post - although recently I have been reading through the forum.

(sorry for the long post)

I am a 29 year old female and newly diagnosed with c diff. For about 6-7 months I have been through hospital and doctor hell - seems like if its not one thing, its another. About a half a year or so ago, I had a very persistent sinus infection accompanied by an ear infection. Since I do not have a spleen and am immunosuppressed, my doc put me on clindamycin to knock the infections. Soon I began to feel better, and the next month I started taking birth control pills (very bad periods, but no underlying issues to date). The following month I began getting increased GI issues. I started out constipated more than anything, but had bouts of D and felt very drained - just took this as an adjustment phase with new BC. When my GI issues did not get better, my gynecologist and PCP both thought I was possibly taking in too much iron, so they switched me to another pill, which still had iron but only a small amount. Docs still chalked it up to iron and constipation, despite my other symptoms (excess fatigue, numbness in limbs and fingers/toes, gurgling belly, general unsettled and sick feeling). I was then told to opt for a hormone free IUD, and that should help (yeah, right!) Just as precaution, however, my PCP did send me to a GI specialist. GI doc also agreed that the iron could be the issue (iron was never really tested though, is that weird?) but she reassuringly ran some basic tests - celiac markers, gluten sensitivity tests, parasites, thyroid levels, and X-ray) But everything came back normal.

Well, scheduled the appt for IUD placement, and the following week I got in. From the very second they put it in i was in EXTREME pain. Severe abdominal cramping, nausea and fever/chills were my main symptoms, but still had GI issues (VERY sore belly, mostly C but now more D as well - at least once a day, some mucous, gurgling, EXTREME urgency). About 4 days after getting the IUD put in, I decided I had enough of the worsening symptoms and went to the ER. They did a quick couple tests and said the IUD was correctly placed and once again blamed my pain on CONSTIPATION! They then gave me laxatives and said follow up with doc. Well it was the friday, and by Sunday I couldn't handle the pain anymore. I then went BACK to the ER, they did additional tests and scans and found a small cyst in my ovaries that had ruptured. My previously scheduled follow up with GYN was two days later and I was feeling even worse. I was subsequently diagnosed with pelvic inflammatory disease (which should have been caught in ER!).

It was so bad at this point, the IUD needed to come out, and NOW. I was told to immediately go get an antibiotic Rocephin shot as it works very fast, and I was to later returned that afternoon for IUD removal. After removal I was given a three week abx treatment of doxycycline and flagyl. My GI issues never slowed down this entire time, but after taking the last treatment of antibiotics I felt especially sick. Waking up with night sweats, nausea and chills only to dry heave and end up with D and M. I felt toxic and like my insides were being eaten, I lost ten pounds, felt extra anxious (am on meds for anti anxiety and those didn't even help), insomnia was unreal (also suffer through bouts of insomnia but not even those meds helped), and i just felt lethargic all the time, which is CRAZY since i am a personal trainer and fitness freak. I could not even move from the bed never mind work. I decided to skip going to my PCP and GYN because I now KNEW something was up with my belly. She once again tested for parasites, but immediately mentioned CDiff as a possibility after hearing my story, so she told me she wanted to test for that as well. However, the prior constipation left her wondering if it was cdiff, even though at this point it was either WD andM or very loose with M. She even scheduled a colonoscopy to check for other issues that may be going on, but called the night before and cancelled it when she got the PCP CDiff toxin test back.

She put me on 500mg of flagyl 3x a day for ten days, and told me almost nothing about this infection, which has led me to go online for my information (SO not smart, educate your patients! We get scared reading this stuff online as its mostly the bad!)

I am now 8 days off the flagyl and still feel awful (though I also felt terrible on it as well - even when i took it after my PID) I know the gurgling and rumbling may not go away right away, but I am still experiencing the frequency (6-12 times a day) and getting very loose stools with a decent amount of M. I am feeling more anxious than usual, I am now getting worsened acid reflux (which GI doc prescribed me prilosec prior to diff but I'm afraid to take it now), I am getting these stabbing pains in my left side under my ribcage that radiates into my pelvis I am having a lot of muscle stiffness and achiness, and have had this on and off low grade fever.

HELP! I am getting a lot of the symptoms I had when I was diagnosed last month. I know that I can't be retested yet, so I am trying to hold off calling the doc. I am trying not to seem like a worry-wart, but I can't help it. Ever since I was diagnosed with ITP years back and subsequently had my spleen out making me immunosuppressed, I can't help but wonder sometimes, especially with everything I've been through recently! I just want my life back. Do all of you get similar symptoms to your first bout when you get flare ups? I'm so afraid of this not going away! Any suggestions as far as getting in calories? There is only so much ensure I can drink, blech!

amg
Regular Contributor
Posts: 275
Joined: Sat Oct 01, 2016 3:16 pm

Re: New to Cdiff

Postby amg » Mon Nov 20, 2017 8:17 pm

Hello and welcome to the forum, though I am sorry you need to be here.

Unfortunately, what you describe could very well be a relapse. My daughter had 4 relapses, 2 after flagyl and 2 after vanco, and we got pretty good at identifying a relapse due to looking at ALL of her symptoms, not just the stool. Your frequency is pretty high (up to 12 bms a day), you still have M (a sign of inflammation), and especially concerning for relapse is that you also have constitutional symptoms like the extreme fatigue and the low grade fever.

You mentioned "flare ups". Let's clarify that. It's very important, because a relapse is something that needs to be treated right away or you can get really sick. C diff doesn't cause "flare ups". C diff can have RELAPSES which is a return of the active c diff illness with production of toxins. Relapses can occur within a few days or within weeks to months after treatment.

Yes, people often have post-infectious irritable bowel syndrome after c diff, or at least symptoms like it during recovery, meaning their gut is sensitive and can have symptoms like cramping, occasional M, looser stool, abdominal discomfort, especially when triggered by certain foods/stress/menstrual periods. BUT.....that should NOT include fever and the extreme fatigue and unwell feeling you're describing.

So if you're having a lot of the symptoms you had when you were sick, this is quite possibly a relapse and needs to be treated asap.
Given that you are immunosuppressed, and given that Flagyl has the highest relapse rate of any c diff treatment, yes it could very well be a relapse and needs a different and more effective treatment than Flagyl.

Please discuss with your doctor. Common treatment options at this point include vancomycin and Dificid. Dificid has the lowest relapse rate, and it targets c diff with less effect on your good gut bacteria, and it works against the c diff spores which cause relapses. Dificid is what ultimately cured my daughter, though she needed a Dificid taper (a longer course where the latter part of the course has lower and lower dosages/frequency). Perhaps, with your immune issues, a Dificid taper would be something your doctor would consider.

Good luck and let us know how things go. We know how awful this is, and we are here to support you. Stay hydrated and talk to your doctor asap.

EDITED TO ADD: doctors don't HAVE to retest your stool for relapse, if they are convinced by your symptoms it is a relapse. Please don't force yourself to wait - talk to your doctor.

brae
New User
Posts: 25
Joined: Tue Mar 24, 2015 5:40 am

Re: New to Cdiff

Postby brae » Thu Nov 23, 2017 2:32 pm

My c. diff came back a week after 2 weeks of flagyl. I got rid of the infection with a second 2 week round of flagyl plus acidophilus probiotic. I'm convinced the probiotic was essential, as it seems to have been with other stories i've read here. As for the acid reflux, be cautious of ppi's (proton pump inhibitors). I have learned not to rely on doctors, even specialists, too heavily for information. I try and do my research and keep detailed records so that I am as prepared as I can be when I have to meet with my doctor, but it's not easy. I'm glad you found this forum. You will get a lot of support and information here.


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