New guy, been lurking for sometime.

[Valor197]

Venting... My story...

38, 205lbs, athletic, swam 2-3 miles every morning, and a 3xwk afternoon weight and running workouts. Nothing crazy just a normal, fit in shape guy...

Jan 13 - Abdominal pain sets in, no D, but very soft n loose stools commence(cow patty like)... I attribute this to something I ate, yada yada...

Jan 23 - pain becomes so great, I go to ER. Never did have the D, but tremendous pain in abdomen, bent over dibilitating pain. Pain instense enough to the point of feeling like passing out from it. ER Diagnosis gastritis - Rx Proton pump inhibitors. I told them this isn't some indigestion, that I had the feeling I was like dying. Told to follow up with my PCP.

Jan 26 - follow up with PCP. She understands my pain, and sees that I am hurting. orders C-diff toxin test(luckily).
Jan 27 - Test positive for C-diff, of course stop the PPIs
Jan 27 - Flagyl 500mg 3xday 10 days... not much improvement, made me feel super crappy. not sure if cdiff or meds.
Feb 5 - End Flagyl. still having pain and soft stool... Weight 184lbs
Feb 6 - Doc calls to check on me, tell of continuing pain, etc... She prescibes Vanco 125 4x day for 14 days.... and refers to GI and ID doc.
Feb 20 - Vanco ends, stools are all over the place, soft, loose, etc..... no ryhme or reason. Pain persists.
Feb 23 - GI says... Vanco 125 4x a day 14 days... Back on vanco...and advises taper... 2xday week, 1xday week, and every other day for a week....
Mar 7 - End of vanco 4 x a day, start 2 x a day...
Mar 9 - ID Doc apt... explain of continued discomfort and abdominal pain. Presecribes, Vanco 125 4xday for 30 more days!!!! Then tape of 3xday 30days, then taper of 2xday 30days... etc... at this point i've pretty much been on it for 30days 4x a day already. I am having lots of other issues along with the intestinal pain, some swelling in my upper thigh, pain in hips, enlarged prostate and pain there, testicular "cramping" for lack of a better word..... lots of tests, ultrasound, urine tests, blood work... all comes back nothing.

Apr 18 - GI orders stool test (only the second one), and sees me... they say it's crazy to be on vanco for that long. I call ID they tell me some people are on it for years, yada yada... i'm feeling crappy and docs be fighting. GI tells me to do a shortened taper if I like. I decide to do 3xday for week, 2x day for wk, 1xday for week, 1x every other day for week, then every 3rd day for a week.

Apr 19 - Morning test results come in negative... ID doc apt in afternoon, who tells me the tests can be false negative, etc... but do what I want. didn't realize that I had been on vanco 4xday for 60 days about.. even though I called office tons of times questioning it and only got to speak to Nurse. who's attitude was "shut up and take your pills"

So i've done my own taper... took my last pill of Vanco sunday...

Sunday had some loose stool, more monday, and more today.... GI ordered a Stool test for me, will submit it tomorrow. or and prescribed an antispasmodic nulev or something like that.

The pain has never really stopped for me, nor have many of the other issues that have arisen since catching this thing. I am tired, in pain, depressed, sad i can't play with my 4 year old son. Haven't worked out in months.

I have gone from 205lbs to 161lbs today.....

I will be refusing anymore Vanco... difficid is it for me if my test is positive. They keep calling it recurrent C diff, but i've only had one test after the initial test and it was negative. I think all this Vanco screwed my guts up big time, i don't think the vanco agreed with my guts, much less 60 days of it. I have managed a couple of good days, but they are random.

Diet:
Bfast
Eggs
banana
1/2 peice of toast (plain)
kefir

lunch & dinner:
chicken breast plain
kefir
1/2 avocado
few pita chips
applesauce

every so often i've worked some fish in there, etc... not sure what the effect of that is as i have continuous pain so trying to rule anything out really isn't working. it just never stops. Not sure where i'm at or where to go. I'm exhausted, anxiety, etc... again i was completely "normal" before this....

[Lisa33]

Welcome to the site, Valor197, but so sorry that you have been going through all of this. Please read the first forum for new users.

Some do experience terrible pain with c-diff. Do you know how you got c-diff? Were you on antibiotics after being in a hospital, nursing home or healthcare facility? I am just curious.

PPI's have been implicated in putting you at a higher risk for contracting c-diff, so I'm glad that those were stopped. A few things stood out to me from reading your post.

First, I do feel like you were on vanco way too long. You should only continue treatment if you are still having the persistent watery D with the urgency to go. In my opinion, and I'm not trying to give medical advice as I'm not a doctor, is that pain alone should not warrant longer c-diff treatment. The meds are harsh and have their own set of side effects. You truly don't heal until you are off of them.

Second, testing while on meds or too soon after may likely cause a false test result which can result in over-treating. The proper protocol which a lot of doctors do not follow is to not test for a cure, but treat relapses based on symptoms alone. If you do retest, it should be at least 10-14 days after finishing meds, the longer the better. Your BM's will be all over the place for quite some time after finishing meds. The rule of thumb is if you are not having frequent watery D, more than 3 times per day with the urgency to go, you are in recovery. See 3 Day Rule for IBS under CDI Info - All You need To Know.

Have you been tested for other pathogens as well with your stool testing? I ask because you want to make sure to rule out anything else going on (i.e. giardia, parasites, etc.)

I agree with you in that it does sound like all of the meds screwed up your guts. Are you taking any probiotics? Many of us take VSL-3 and Florastor. VSL-3 is a live lactic acid bacteria probiotic. It should be spaced apart from meds as the meds will kill it off. Florastor is a yeast probiotic called sacchromyces boulardii and is not killed off by meds. Probiotics can help to rebuild your good gut bacteria that has been lost, and can also help with post infectious IBS.

You have lost a lot of weight, but your diet does sound very good at this point. You don't want to overdo it, and need to heal. To me it doesn't sound like you are still presenting with normal c-diff symptoms. Loose stools does not constitute c-diff still being present. Many of us, including myself had loose stools for quite some time. It actually took me 8 months to have just one BM per day in recovery.

If you are still positive for the c-diff toxins, I would also go with the Dificid. Dificid/Dificid tapers cured many on this board after vanco tapers failed. However, go by your symptoms, and don't treat unnecessarily.

I hope you can just start the recovery process. Many on this board use heating pads for abdominal pain. I wish you better days ahead. The one thing to keep in mind is that you will get over c-diff. Stay strong. I know how hard it is as a parent not to be able to enjoy your children because you are sick. My daughter was 3 when I had c-diff, and it completely stunk!

Hang in there,
Lisa

[roy]

I am not an expert but if your illness does not respond to Vanco then its possibly not c.diff that is causing it.
C.diff can be a normal part of the gut flora and a stool test picks it up.
In this situation it should not be treated.
Its only a disease if it overgrows and then vanco is used to kill it.
Dont let your Dr put a c.diff lable on you and ignore your symptoms.
If c.diff meds dont have any effect at all then its highly likley its not c.diff thats causing your problems.

[Dukiemom]

Kudos to you for trying to stay on top of all this and manage something that is so complex when you feel so poorly. You certainly have worked hard to try to make inroads toward getting better. I really appreciated the "docs be fighting" part of the narrative. If I understand your summary, almost everything you have experienced is fairly normal.
You were initially misdiagnosed and then tested and treated for cdiff (along the way you have had many tests to rule out other causes for your problems)
You tried flagyl, vanco, vanco with taper (one somewhat oddly long course)
You had to change your diet to reduced intake and bland to manage pain and GI issues so you have less energy and have lost weight.
Now you are off meds and at this point you either will begin recovery with a really screwed up (but typical) GI situation that will take a long time (up to a year) to recover where your BMs will be all over the place, you will experience pain/discomfort that will eventually recede and you will cautiously introduce new foods that will give you more energy and begin to put weight back on...
Or, You will still have cdiff (they always call it recurrent when you can't get rid of it after multiple protocols) and you will move onto Dificid (my personal savior) and then have the above recovery or still need an FMT.
You WILL get better, it just shouldn't be so hard, but it is.
I found myself spending a great deal of mental energy trying to go back and figure out what went wrong, which docs said what, focusing on weight loss until I found, at least for me, it was better to look forward. Was I doing the right thing now? Was I doing all I could now? And I had the hardest time with being patient. You lift, you know body changes don't happen suddenly. Your internal healing will take time. But you have a cheering section here and I'm guessing once you start recovery you will do well. You have taken good care of your body for which you should give yourself credit. Keep us posted.

[Valor197]

reading all this info, I keep seeing people talking about strains... should I have (or if positive again) find out what strain? that normal testing?

[roy]

All strains are treated with the same meds so Drs consider theres no point in expensive strain testing.

[Valor197]

Pretty normal for abdomen to be tender to pressure on it too I'm guessing?

[NanciT]

Hi Valor197

It's tough to say what is"normal" about CDIFF. Symptoms are all over the place. I was very sick for months, abdominal pain, I had terrible vomiting, IBS, it took 10 months of treatment for me to get rid of it. I thought it was related to the fact I am in Healthcare, which it may be. The GI's that I saw all told me I had a "difficult strain" but no one felt there was a point to test that. It was all about treatment. Some on here are treated once and do just fine, it's hard to say why.
The best thing to do is communicate with your GI or ID and make it clear what your symptoms are. I still am adding foods slowly which really worked for me. I have also continued on VSL#3 which I believe has helped the Post IBS.
Hope you feel better soon
NanciT

[Acres]

Hi,
Glad to see you have posted.....
I believe d-mannose is helping me with my urinary track/prostate, hip and flank issues. Pain is 90% gone....
Not sure if I mentioned it before but I take vsl3 and florastor everyday....
Scott

[Ril]

Abdomen being somewhat tender is normal. Your gut has been getting a workout.