Vancomycin + Relapse Reassurance Request

[Pinecone]

Still in the midst of dealing with bad family stuff, so going to try to keep this short and to the point.

After I finished dificid, I continued to have symptoms. Due to life drama, I decided I was over being sick, and insisted on a colonoscopy. After they assured me it wouldn't risk c diff reinfection, I had one the next day. For anyone wondering, yes, the prep is awful. I threw it up a bit both times I drank it and felt horribly sick all day. Anyway, the colonoscopy went "well" in the sense that they didn't find anything, and "really devastatingly poorly" in the sense that they didn't find anything.

Of course I continue having symptoms. GI doc tells me it's anxiety, tells me to go to a "pain clinic". Made me very angry, didn't talk to them for a week. Diarrhea worsens over the next week. Send in a sample, lo and behold, I still have c diff. And yes, before anyone asks, it was the toxin test. I checked.

So now I'm on a vanco taper and it sucks. Maybe dificid had me spoiled. Maybe it's the c diff. Stomach hurts all the time, every day. Not a cramp, but like... a heavy, sharp pain. It makes me gassy, and I cramp up every time the gas passes. The diarrhea is gone, and I haven't had a cramping attack in two weeks, but I've had constant all-over pain instead.

I just want to hear reassurance about this treatment course. I'm about to go from 4x a day to 2x. Does a taper fix people? I'm having a hard time finding examples. Will I be free of this pain soon? I will soon lose insurance, government aid pending. I have to put on a strong face in real life right now, and for the foreseeable future. It will be easier to do so without sickness or financial burden.

Please, for my sake, don't bring up mental health, alternate diagnoses, or try any tough love. I have enough toughness in my life right now. It'd absolutely make me cry. I ache for rainbows and fairy tales, but reassuring words and stories will do too. Thanks in advance. May not reply for a while because things are so unbelievably hectic and ever-changing and frankly scary. But I will read and appreciate any kind responses.

[Benh]

I'm sorry that you are going through this again. I and a few others here have done or are in the midst of long vanco tapers. Mine is going to be about 4 months when I am done. I am now on one 125mg every other day then go to one 125mg every three days for two weeks, then pray! I can say that for me, the vancomycin didn't seem to cause the issues that you are experiencing, although I was never on dificid so I can't compare to how much better I may have felt on that. I will say that I have IBS type symptoms, like pain and irregular movements. I also developed gastritis, which is causing me more issues in terms of weight loss and anxiety. I don't think it was or is the vancomycin but rather stress induced. I think so long as the c diff is responding and the side effects are not overwhelmingly bad, try to stick it out. Hopefully others will post about the all over pain, I don't have that thank god! Good luck and I wish you well.

[HeatherV]

I got better after I read the paper "Novel Fidaxomicin Tretment Regimens for Patients with Multiple C. Diff. Recurrences that are refractory to Standard Therapies" written by Melinda Soriano, Larry Danziger, Dale Gording and Stuart Johnson. What it is is a "Difficid Chaser" after a Vanco taper. Worked for me so far, am 3 months free of C. Diff. Total taper time including Vanco and Difficid was 4 months. Still have nausea but no diarrhea since starting taper regimen in November 2016.

[NanciT]

I am sorry you are having a difficult time, know that you are not alone. On the site here many have walked in your shoes including myself. I also did a long Vanco taper followed by a long 3 month Dificid taper based on a paper I found. It has been a long recovery. I am not sure why your GI would suggest a pain clinic other than many GI's really don't understand how difficult CDIFF is to get through. For me it has been a long hard journey but little by little I improved. I think my recovery was long due to the long Dificid taper. I did get better, it can take some time. The stress all around you can make it much more difficult.
Have you considered another GI? I recently changed...again. I have never been one to change MD's but with this illness I had to for many reason and I have had several GI's.
There are medications that can help Post CDIFF. I used Levsin and also stayed on VSL#3 which I feel helped.

You WILL get there...sometimes it can take awhile. I hope you feel better soon

NanciT

[cnatra]

Well I've been on Vanco for basically 4 months with a long taper and some pulse dosing but the C Diff keeps coming back

I'm convinced I will need at least one FMT to restore my gut microbiota. I'm also thinking a 10 day course of Dificiid would be ideal before that step.

I'm meeting 2 new GI docs & an ID doc over the next week to try and chart another plan of action since the Vanco can't seem to knock out the C Diff. :(

The side effects I've had on Vanco have been much less than what I experienced with Flagyl though.

[cnatra]

NanciT do you think your treatment regimen sounds like the same plan as HeatherV's ?

[Bobbie]

Heather, would you please put the info on Dificid taper in the Treatment forum?

Welcome to the site. Please read the first forum for more info and the rules of the site.

Best of luck in your recovery.

[HeatherV]

Thanks everyone. I will ask my doctor about the drug. The paper I read about the Difficid Chaser was by Melinda Soriano, Larry Danziger, Dale Gerdin and Stuart Johnson. I found this on my own and modified it as I posted in treatments. I was scared to death to stop the Difficid for fear of relapse but finally found the courage on March 8 and have been med and relapse free since then. So grateful to have found this site. I am fighting nausea and because of this site I bought the sea bands which have helped tremendously. I have also made an appointment to have my blood work done. Thank you everyone!!!

[NanciT]

The taper I did on Dificid was different than Heather has listed, there are also posters who did a 30 day with great success. Mine was the same amount of time( 3 months) but a pulse/taper from a research paper I found in 2014. The was out of desperation. At the time the FDA placed warnings on all FMT's and no one in my area would do them here. I relapsed after the initial 10 day Dificid and there were no options. My GI agreed to this research paper I had found online wile waiting to get in with the only GI I could find to do an FMT. I finally got in for my consult for FMT and he asked me to complete the Dificid. Finally it worked and no FMT was needed but I have had a great deal of Post IBS for nearly 2 years.

NanciT

[cnatra]

Thanks for the info NanciT !!

[Lisa33]

Just another thing to add is that some posters on here who have been cured after battling stubborn bouts of c-diff have had doctors prescribe Enteragam for them in addition to their treatment regimen. It's a prescription medical food - you should look it up. Maybe this is something to look into with your doctor as well?

So sorry for all that you are going through.
Lisa

[Pinecone]

Is there a different subforum where I can ask for just reassurance? I'm not interested in hearing about different medicines and stuff. I live in the boonies and no one cares about anything not in a book.

I don't feel human anymore. I see other people with their "problems" and get very jealous. I never did anything to deserve sickness, and I know many people who did nothing to deserve health.

I am on week whatever of Vancomycin. It's useless. Eating hurts, drinking hurts. Sleep is interrupted by pain. Passing gas hurts. Going to the bathroom hurts.

Out of painkillers too. Bentyl and Tylenol are worthless. Allergy season kicked in, so I get to add that suffering to the list.

[roy]

Sounds like a Facebook type site where all anyone says is "poor you" or don't worry" might suit you better.
Here we are concerned with people who are wanting support to get well and are seeking out what treatments worked for other people.
We try our best to guide people so they dont join the other 14,000 Americans who die from this disease each year.
C.diff is not something that anyone needs reassurance about, it's a deadly infection if its not respected and it killed my mother in 12 weeks.
If your not responding to meds you do not need reassurance, you need a new Dr!

[Lisa33]

I agree with everything Roy said, and just wanted to add, if you can't get the treatment that you need where you live, there are many posters who have traveled to the best hospitals and doctors to get what they need to overcome this illness. You should be interested in hearing about "medicines and stuff," because that is the only way to get cured. And, I also feel that many of the posters on this site do provide a ton of support and reassurance along with ideas and suggestions that has worked for them. If it wasn't for the posters on this site, I would not have been educated enough on the illness, and I don't know how I would have coped mentally with it during and after in recovery. Nobody deserves to get this illness. It's an awful, horrific thing to have to go through as it makes you chronically ill for a period of time, but it is curable. Try to focus on getting better, which probably means a new doctor. Don't accept how you are feeling now because it shouldn't have to stay this way.

[georgina]

Pinecone
I'm confused about not knowing what you expect from us. We are a site that can help others with tips and advices from our own experience with Cdiff , we are not therapists.