1 year out, fearing possible relapse

[Rev1119]

Hi all - this week is my 1 year post-vanco anniversary. The first 6 months of recovery were rough, but I started feeling better thereafter. Unfortunately, as of the past week or so I haven't been doing so well. 3 weeks ago I was put on a "short course" of 20 mg omeprazole (yup - by a GI doctor who I don't usually see) for reflux-induced gastritis as H2 blockers caused intolerable side effects. I really, really didn't want to do it but the doctor said it was necessary, and that the risk of relapse from the omeprazole would be very low as I was not taking it as a hospital patient (yet she knew I had C. Diff prior). Currently weaning off of it as quickly as I can.

3 x 3 rule did not apply to me the first time around (my only symptoms were mushy stools and abdominal cramping - was shocked to test positive then). Now, having similar stools and my cramps have been horrid. The biggest issue per above mentioned GI (who ran some tests 2 weeks ago) is that my calprotectin level (marker of gut inflammation) is 315!!!!!! (<50 is considered normal) So to say I'm fearing a current relapse would be an understatement. While IBD/Ulcerative Colitis really runs in my family and my father was diagnosed at my age (which elevated calprotectin often indicates), my symptoms closely match those when I went through C. Diff the first time around last year. My regular GI doctor wants to see me first thing tomorrow morning - eager to go in and find out what is wrong but also dreading the possibility of relapse and just in need of some overall support. Ugh.

[Bobbie]

Doubt if c diff has reared its ugly head again after a year. Glad u are seeing a doc tomorrow. You need a medical diagnosis - something we can’t give you on a website.

Best of luck, and let us know what the doctor says and suggests,

[beth22]

My mom took Prilosec every day for years, even after she had c diff. It did not cause a relapse. As Bobbie said, best to have the doctor check it out, especially with the family history of IBD.

[Rev1119]

Thank you both. I saw my GI doctor yesterday - while he strongly suspects that I have ulcerative colitis (proctitis), things are progressing in a bad way and (without being TMI) my stools are very characteristic of C-Diff and the cramping is getting worse. The doctor volunteered that I should take a C. Diff stool test; I did this today and results should be back within a day.

I have never done well on any antibiotics - the side effects of vancomycin landed me in the hospital last time. My doctor had previously said that I would not be a candidate for a vanco taper should I relapse. I'm concerned that I will not be able to tolerate Dificid, but thinking that I likely have no other choice right now.

[roy]

Anything is possible but Vanco is not usualy a med that causes side effects as it is not absorbed into the blood stream.
IV vanco has a rare side effect known as red man syndrome but theoretically oral vanco does not cause it.

[Rev1119]

Yeah I read on this board that many people do not have side effects from vanco. Unfortunately I was not as lucky when I took vanco last year and side effects of vanco landed me in the hospital! As a result, my doctor said I am not a candidate for vanco/a vanco taper if C. Diff comes back and mentioned Dificid in passing last time around; I'm thinking that's what I'll get now if the test comes back positive (almost certain it will). Hoping I do better with Dificid because I don't want to be in the hospital right now.

[roy]

Sorry but I am a little confused.
Your posts from last year say you were cured ( negative test) after a course of vanco and dont mention anything about side effects or being hospitalized.
Dont rule out vanco, it's an important weapon in the fight against c.diff.

[Rev1119]

Sorry for the confusion! I had a negative PCR in the hospital via colonoscopy 1 week after finishing a course of Vanco last year; I was hospitalized due to major side effects from the vanco. It seems like many folks do a vanco taper if a second infection occurs, but my GI has said that I am not a candidate for that due to the side effects (he almost took me off of vanco completely several days in last time!) and that he would put me on dificid this time around.

[beth22]

We had a poster that I kept in touch with for a while that also had side effects from the vanco. It is not common, but it can happen. For me, it affected my hearing, but she got a rash every time she tried to take it and so had to take Flagyl because Dificid was not out yet. I would try the Dificid if your test comes back positive.

[Rev1119]

Thank you - my doctor just called to tell me that I've tested positive again. He was going to give me Vanco again but I demanded Dificid and zofran which he will prescribe for me. Fingers crossed that it works and that I don't need to be hospitalized again this time around!!!

[NanciT]

Hoping the Dificid works for you, I have done well on it, I do not feel well while taking it but I am currently 2 weeks post taper. I have alot of bladder symptoms while taking it but it has worked for me in the past (2014/2015) when I failed everything else including a 3 month Vanco taper.

Be careful with Zofran, talk with your Doctor or pharmacist. Any medication that causes constipation needs to be taken with caution during CDIFF. I was not able to take it due to that. I used "Sea Bands" for the nausea which helped.

Wishing you the best with it, it has worked for many!!

NanciT

[georgina]

Calprotectin level was quite high , could be from the Cdiff infection , but it still doesn't rule out the possibility of IBD. If i were you , i would ask the doctor to repeat the test after the Cdiff treatment , just to be sure.

[Rev1119]

Thank you Nanci - I hope so too! And I hope that you are feeling better after the taper! I'm not touching zofran unless I absolutely need it; I'm a lot more educated about what not to take this time around which I'm hoping will help as well (the first time around I was not and actually took Imodium all throughout my course of vanco....!!!!) Felt some nausea this morning after my 3rd Dificid dose but open window, ceiling fan and saltines did the trick :)

Georgina - Good point, especially since IBD really runs in my family! My GI doctor saw me in-office on Monday and he suspects I have a form of UC called proctitis. He wanted to do a flex sig just to make 100% sure so he can get me started on the right treatment, but since I've tested positive for C. Diff that's been put on hold. He told me not to wait too long for the flex sig (and I read that ulcerative colitis can progress if left untreated), so I'm hoping to reschedule for when I feel better, and probably will get another C. Diff test too.

[Rev1119]

Georgina, reading your post again I am guessing you meant retest calprotectin levels (and not for C. Diff)? Guess retesting for both again would be a good idea anyhow (sorry for the misunderstanding; I'm running on no sleep as my C. Diff symptoms reared their ugly head at 3AM every night earlier on this week!)

[georgina]

I was talking about the calprotectin.