Long time lurker - please help :(

[alex77]

Hi everyone,
My name is Alex. I am 28 years old & have been dealing with C.Diff since mid March of 2022 (possibly even before then). My symptoms all started sometime after eating at Five Guys (I know, disgusting, I went on a fast food binge & am thoroughly regretting it now). Out of no where I noticed myself going to the bathroom multiple times a day, which was not the norm for me at all. Some stools wouldn't even be stools, they would be strictly 'M'. I went to the GI & he diagnosed me with SIBO because all my tests came back negative for everything else including C.Diff. He put me on Atrantil, which you can find on Amazon, lol.. anyway... this obviously did not help at all. All of a sudden I was experiencing 'M' on a daily basis multiple times a day, I had the chills, my heart rate would skyrocket when I went to the bathroom, & I knew something was really wrong. So I ordered a 300$ DNA stool test from MicrogenDX (fantastic company), and it showed I was positive for C.Diff Toxin A/B. They immediately put me on Vanco, for 10 days, and then another 10 after to be safe. This was late April early May mind you.. So after those ABX I felt a LOT better & thought I was good .. but nope! About a week and a half later all of my symptoms came rushing back, specifically the 'M'. About 30 times a day to be exact. I got retested by my GI this time, & it showed positive again for the toxins. They put me on a Dificid taper. Now, here is my main question.. Can you relapse DURING the treatment with Dificid? I have had some days where I feel absolutely incredible during it, & now that I am on the taper portion (once a day for 7 days), all of a sudden the 'M' has returned randomly throughout the day, I will get one formed-ish stool in the morning & then everything after is very.. odd to say the least.. & my abdominal pain right in the center of my chest is on & off constantly. It just scares me seeing the 'M' & having pain again because it feels exactly how it did before the ABX. I'm so sorry for the wall of text, this has just really been a lot for me to handle & no one understands what I am going through. I used to weigh 133lbs.. I'm currently 119lbs which is very disheartening, I just want to feel better. Thank you everyone.

[beth22]

Hi Alex and welcome to the site. I don't know about a Dificid taper as I have not taken Dificid, but I did relapse when I did a vanco taper while on vanco. I would check with your doctor though. Usually when you have symptoms like that they increase the dosage for a few days and then try to taper again. This is with vanco, but Dificid may be different.

[GtrGrl]

Hi Alex,

I’m sorry you’re now part of this club. I had Dificid twice, although not a taper. Neither time was enough to clear it so sorry to say I expect it probably is possible to relapse if they got you to lower dosage too early. I would do as Beth suggests and go back to doc.

We understand what you’re going through. You’ll get there, try not to lose hope.

[alex77]

Thank you both for taking the time to reply I really appreciate it. I just messaged my doctor on MyChart & asked if we can up the Dificid dose back to 2x a day for at least a week, & then I will continue the 1x every other day taper afterwards. Hopefully she says yes because I am really trying to get through this without needing a FMT as the thought of that is making me very anxious. I had bad days earlier on in my 2x a day Dificid dose too but they eased up after a bit. I just find it odd that like 3-4 days into my 1x a day dose I start experiencing old symptoms again for 2 days now, today will be the third but I just woke up so let's see what today brings me.

[GtrGrl]

See how it goes. A longer taper may well help you! Try not to be anxious about FMT; it’s not even on the table at this point and if it comes to that, board members who have had one can ‘walk you through it’.

[alex77]

Thank you :( I had to literally beg for a Dificid taper in the first place because my GI doctors are so incompetent with C.Diff it's actually scary. She told me "a Dificid taper has never been done before".. then I sent her that clinical study & she immediately approved it. But now I just know that trying to get her to fill me another week of 2x a day is going to be a nightmare. They read my message I sent to them @945am this morning & it's now 11:50am.. I know I'm just being impatient but I just want to get back on the normal dose asap. & they mentioned that an FMT would be necessary if I failed both Vanco & Dificid, so I'm hoping they dont mark this as a failure just yet.

[GtrGrl]

I’m sorry. It’s so stressful dealing with the ‘admin’ side on top of the symptoms, esp. when you seem to know more than they do. Hang in there!

[alex77]

I was the reason I got correctly diagnosed in the first place so I definitely seem to know more than they do lmao! If I cant get another 7 days of Dificid from my current GI I will be finding a new one immediately so I can get it. I know I was getting better on it I just feel like I need another week of it followed by the every other day taper to fully kick this monster out of my system. Thank you so much for all your kind words, I'm hangin in there the best I can :').

[NanciT]

Alex77
So sorry you are going through all of this. I have a great deal of experience with Dificid because it saved me in 2014-2015. I had CDIFF for over a year back then and failed two tapers of Vanco. There was a hold on FMTs at the time also so I was desperate. I did a long....Dificid taper and finally got rid of CDIFF. I did not feel well the entire time. Had symptoms on and off and continued with Post IBS for 2 years after.

I now have a Infectious Disease specialist I see. He is aware and will always treat me with a Dificid taper. It is what works for me. I had CDIFF again in 2020...did the taper and thankfully have been fine. There is alot of information online about DIficid tapers. My ID is with a Large well known teaching hospital. Not sure why you Gi has never heard of this.

You may consider and ID specialist and explain what you have been though

Wishing you the best

NanciT

[alex77]

Hi Nanci,
Thank you so much for your input & knowledge. I've read a lot of your posts during all of this before I made an account & they all made me feel much better. I have a slight TMI question for you if you don't mind, 'M' has been present whenever my C.Diff infection was not being treated & it was one of my main symptoms that kept occurring until I was put on both Vanco/Dificid. Did you have any M while you were actively taking Dificid? I just find it odd that it's now happening again (not as frequently thank goodness), while I am tapering my dose. I just finished up my 1x Dificid for 7 days, and today is my first 'off' day beginning the every other day treatment. & yes I am in the process of looking for an I.D. doctor because working with my GI "doctors" has been an absolute nightmare & I have had to advocate for myself 99% of the time.. it's like they don't believe me or something even though all the signs & tests point directly to C.Diff (obviously). Anyway, thank you again & I really appreciate you taking the time to come on here & talk to me.

[Lissaucd]

Hi there! So sorry to hear- I was on dificid too! I had mucus too while on it- I was told that it was my “angry” colon and it was inflamed. It took me a long time to get back to normal and I still have flare ups (which freak me out and I get on here and look for reassurance) The meds made me feel nauseous and I lost a lot of weight too. I was 120 and now I’m almost 90 pounds. Check out my other posts. I have bad anxiety!!! If you don’t mind paying out of pocket I would make an appointment with Neil Stollman in Oakland CA. I did a zoom call and it literally changed my life. I can send him questions and he responds right away. He understands anxiety more than any other doctor I have ever met. Worth every penny for that appointment. He will look over your charts before and go through EVERYTHING with you. He knows c diff in and out. When I have bad freak out moments, he walk me through them to see if it’s a flare up or actual cdiff. I told him this month when I had a bad episode of D bc both my grandmothers passed within 5 days of each other that he can never retire!!!

[alex77]

Hi Lissaucd,
Thank you so much for your helpful input!! It makes me feel better to hear that you experienced M while taking Dificid as well, & I obviously mean that in the kindest way possible. My symptoms have been more or less the same the last 3 days, not horrible but not great either. Today I kept having that urgent feeling like I have to go to the bathroom, only to have a little M & gas (sorry for the TMI) when I go. This was a symptom for me before the antibiotics as well but it was much more intense and about 30x a day, this only happened about 2-3 times today & wasn't extreme by any means. It's just scary having symptoms that you've had during an active infection while you're still on antibiotics/taper. & thank you for that doctor's info! I will look into him tomorrow & see if I can set up a Zoom appointment asap. I will take any doctor over the ones I have at the moment as they didnt even take the time to get back to me today about giving me one more full round of Dificid before I finish this taper. I was feeling better on the 2x a day dose than I am right now.. so that's why I'm assuming it's either coming back or it hasn't fully gone away yet.. or these are just irritated colon symptoms. Who knows. I just want it to go away for good!! Thank you again.

& I am so sorry to hear about the passing of your grandmothers, I wish there was more I could do than just send my condolences <3.

[NanciT]

Alex

I have read about M for many years on this site and oddly enough never had it but it is VERY common. Dificid is a "harsh" drug. After the first 10 days it made me feel terrible....the first time in 2015 and then again twice in 2020. I found it difficult to take but pushed through because I had no other option. In 2020 once again they put a halt on FMts during the height of Covid....so there I was again. But it does work for me. I will say these last 2 times I got over MUCH quicker and I had it BAD! I had been in the hospital on IV antibiotics adn VANCO when I got home I slept in the bathroom...it was the worst. Day 3 DIficid kicked it and I was so grateful. I still keep an expired bottle...just in case.

Good to hear you are looking for an ID, mine is very set on getting me DIficid Taper if needed. It honestly saved my life in 2015.

It does amaze me the number of MD's I talk to and they really have NO IDEA how difficult all of this is. I have been in healthcare my entire life and went into teaching........I even had my students do projects of CDIFF....I wanted them to understand how very difficult it is for some. Not everyone.......but many!

[alex77]

Hi everyone, just wanted to give an update on my current situation.

So no one (including myself) can tell if the Dificid is actually working. I am still having a lot of sporadic symptoms every single day that include pain, going multiple times in a row, M, etc. My new GI team that I just met with yesterday got me in for an urgent colonoscopy so they can 100% determine what is going on inside my body & I agreed to have it done. I cannot keep playing the guessing game anymore & this way they will be able to actually determine what is wrong with my stomach/colon & if they can visually see evidence of C.Diff still being present.

Wish me luck & I will update after the colonoscopy :').

[GtrGrl]

Hope they find an answer for you. Good luck and let us know.