Not sure what to do

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s4boost
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Not sure what to do

Postby s4boost » Tue Sep 01, 2015 9:48 am

Hello, My name is Walter, and I am an otherwise healthy 27 year old male, and I was diagnosed with c diff. This is my story.

I had an appendectomy on May 5th. It wasn't a smooth operation being that I had an infected appendix for about 3 weeks with almost no symptoms. My hospital stay was 4 nights where I recieved IV antibiotics and then 7 days of Cipro and Flagyl after my release. About 2-3 weeks after I was released from the hospital, I noticed restroom urgency, extremely painful (worst pain ever) burning and bloody loose stools, fullness in the Rectum and spasms in the rectum after BM. I dealt with this for months. Some days weren't so bad. Some nights I was writhing in pain back and forth to the toilet and then in a hot bath for relief.

I called my surgeon finally and he ordered a colonoscopy which came back positive for c diff. He immediately put me on Flagyl for 10 days. After that prescription was over, about 3-4 days later all my symptoms were back. I called my surgeon and he said come back in. I was then given 10 days of vancomycin 125mg 4x/day which concluded Saturday morning August 30th. Sunday August 31st I was back on the bathroom with loose BM's blood and excruciating pain. I was up until about 4am (Sunday night/Monday morning) back and forth to the toilet and then the bath again with loose BMs. I called my doctor early yesterday morning and asked for a follow up that day. He ordered a 4 week vanco taper and is referring me to an infectious diseases clinic at Vanderbilt.

Last night I had no urgency. Nothing really relatable to c diff. This morning I had a BM with very mild discomfort/burning and no blood, and it was mostly formed.

Now I do have a question, I have 3200 of vanco sitting in my kitchen that I haven't touched yet. I have not been tested since my colonoscopy and original diagnosis (about 5 weeks ago). Should I move forward and begin the vanco taper or should I contact my doctor and let him know my bowels seem to be functioning much more normally at this point?

I was to conclude this with some oddities I've noticed with my body. While I had appendicitis, I showed 1 symptom. Which was localized tenderness/pain. My white blood count was even normal. The surgeon said he has seen 3 cases like mine where it looked that bad inside but the body had "walled off" the infection to the point that it almost was t even recognizing it. Also, with c diff, my symptoms have been much different than others. I have never felt as though I was dehydrated. I haven't really gotten the nausea or vomiting, my toilet visits were probably 7 times a day, I've never lost my appetite and I've had no fever. All of my symptoms have presented themselves in the form of rectal pain/discomfort/bleeding. Not sure if that adds any value, but it seems as though my body reacts to infection differently than most.

Lisa33
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Re: Not sure what to do

Postby Lisa33 » Tue Sep 01, 2015 10:24 am

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Hi Walter - Welcome to the site, but so sorry you have been going through so much. After reading your story, I would probably be hesitant as well to start a new round of vanco given that today has been a better day with a mostly formed BM. I would give your doctor a call and see what he recommends. If you are feeling ok, it may be worth seeing how the next couple of days go before starting treatment again, as long as the doctor agrees. The meds are strong and the real healing doesn't begin until you are off of them. You don't want to take them unnecessarily. Typical c-diff symptoms are frequent watery D sometimes with blood, nausea, chills, and abdominal cramping or pain. That's not to say that everybody experiences the same symptoms, as there are a few on this board that actually had constipation and vomiting. But that poses the question, do you treat or not if you are not having the frequent watery D. Unfortunately, doctors do not seem to be on the same page when it comes to this question. My advice would be to seek another opinion with an infectious disease doctor and have him review your overall health history. An ID may be better than a GI in this instance as your body seems to react differently to infections. Hopefully you can get into one rather quickly. The other thing that comes to my mind is that you didn't mention being tested for any other pathogens through a stool test. I am not sure if a colonoscopy picks up other pathogens, but if it were me, I would want to rule anything else out that could be going on. It is not wise to retest for c-diff so soon after stopping meds in that you can get a false result. It is recommended to wait at least 2 weeks after stopping meds. However, most doctors treat c-diff relapses based on symptoms alone as to avoid over-treating based on false results.

It is great that you still have an appetite, but I would still not overdo it with foods and eat a little bland until things settle down a bit. You don't want to add to the rectal discomfort. Are you taking any probiotics? Many of us on this site find VSL-3 and Florastor to be beneficial. Also many drink Kefir as well. VSL-3 is a lactic acid bacteria. It should be spaced apart from any c diff meds, as the meds will kill the live bacteria. Florastor is a yeast probiotic containing S. Boulardii. You can take this anytime as the meds will not kill it. Both type of probiotics will help to restore the good gut bacteria that has been depleted by antibiotics and c-diff meds (antibiotics). They also help with IBS, colitis and other digestive issues.

I do hope that things continue to improve for you. Please keep us posted on what the dr says.
Lisa

s4boost
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Re: Not sure what to do

Postby s4boost » Thu Sep 03, 2015 12:23 am

Thank you for that.
My only real symptom right now is painful BM and a small amount of blood.

Has anyone else to your knowledge experienced extremely painful BM's? (Gross explanation ahead) the best way I could describe it is an intense burning feeling Like acid is coming out. This happens almost every time I have a BM. Before I was originally treated, it was easily a consistent 7-10 on the pain scale, often times with blood. Since my last dose of vanco (Saturday morning 8/29) I've had the burning BMs but much less severe maybe a 3 on the pain scale, and some itchiness almost dryness feeling, like I'm chapped back there. Lol.

I'm quite confused if this is definitely c diff coming back, or if my body is still adjusting. It's worth it to say that the burning went away when I was on the antibiotics both times. Probably within a day or two.

As far as being tested for other pathogens I'm unsure. I would imagine so, being that the surgeon does a TON of or procedures every day, so I'm sure he's dealt with numerous HAI's. I can double check on that. As I said, I do have an appointment with vanderbilt's ID clinic on September 17th.

Last thing is, yes, I am taking 1 metagenics ultra flora am/pm, and jarrow formulas sacc. Boulardi +mos 2 am/pm. should I add to that?

Thank you so much. It's so nice to have a place where I can go and talk to people going through this same thing.

Might I mention I have take. 5500 in medications in 6 weeks.

beth22
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Re: Not sure what to do

Postby beth22 » Thu Sep 03, 2015 2:24 am

It's hard to say about what is causing your pain. It sounds as if seeing a proctologist (colon and rectal surgeons they are now called) might be a good idea. Some people get inflammation in the rectum, proctitis or even something less complicated like fissures or hemorrhoids. If you are seeing a small amount of blood, a fissure or hemorrhoid can cause it. I would definitely check to see if you were tested for other pathogens, including parasites. Sometimes you can have more than one bacteria and a culture would tell you if you have anything else.

Lisa33
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Re: Not sure what to do

Postby Lisa33 » Thu Sep 03, 2015 10:24 am

I agree with Beth on getting the pain/burning checked out, just to rule out any other causes. It very well could be just a fissure/hemorrhoid brought about by everything going on, but good to see yet another doctor. It sounds like you are good with the probiotic intake (in my opinion anyway). I am not familiar with metagenics, but maybe compare it to VSL-3 to see if they are similar, as VSL-3 seems to be what most take and most recommended by doctors for a live bacteria probiotic. I was told by my doctor that refrigerated live bacteria probiotics are more beneficial. I am not sure of the reasons and if anybody else knows this to be true on this site, please chime in. Sacc Boulardi is definitely a good one, so continue with that for sure.

I hope you get to the bottom of your pain soon and can move on from all of this. Keep us posted.
Lisa

Tonja13
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Re: Not sure what to do

Postby Tonja13 » Thu Sep 03, 2015 2:02 pm

Chiming in....
Hi Walter. You sound like you've had a pretty rough time. Sorry about that. You are young to be suffering with C Diff, as many of us (myself included) are on this site. C Diff symptoms can vary person to person--although your symptoms may sound atypical to many, your symptoms don't seem unusual for an otherwise healthy 27-year-old. Young people have stronger immune systems and the "typical symptoms" you will see on most informational websites are based on the "typical patient", to this point, that's been someone in a nursing home, or immuno-compromised.
As far as probiotics, I will touch on the "why" in Lisa's question...they have introduced "shelf stable" probiotics that they say don't require refrigeration (a typical temp of 40 degrees), if you read the packages CLOSELY they will have a line that states the temperature range for which they "guarantee" the survival of the bacteria...typically anything UNDER 73 degrees. "Normal" room temperature is considered to be 72 degrees. But room temp is not constant anywhere and is frequently above 73 degrees. (Not to mention storage and shipping trucks.) They are cutting it REALLY close on the "room temp stable" thing.
Also, it sounds like you are undecided if you are actually relapsing or just going through some post-infectious IBS and etc. It's really up to you...I remember the horrible burning/chapped feeling. That usually came with the toxins for me...I've not had that feeling since the actual infection--even though I've my share of IBS scares. But for others it was different. You've got the prescription sitting there waiting--it will still be there if you decide to wait until tomorrow...I feel like you're a little early for testing at this point. Chances are a PCR test would come up positive even if you had already beaten it, so it wouldn't be much help right now. (It detects dead bacteria and spores and very often still clearing out for several weeks after successful treatment.)
How is your diet? Believe me, I always had a gut like iron before C Diff, I could eat anything with no troubles. For a looong time after, very little wouldn't just fly through. Have you been following the BART diet? You might want to try that for a while, try to give your GI as much "rest" as possible.

Prayers...
Tonja

s4boost
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Re: Not sure what to do

Postby s4boost » Fri Sep 04, 2015 1:42 am

Tonja13 wrote:
> Chiming in....
> Hi Walter. You sound like you've had a pretty rough time.

Tonya. Thank you for everything you said. My diet could be better. I'm starting now to watch it a bit more. I have added the kefir as of today and have eating a lot of probiotic coconut yogurt. I will focus more on the diet in the coming days to beat this thing. My gut feels really strong the last two days. Sunday was pretty awful. It hit me like a truck to be honest, but each day I have felt stronger.

I still frequent the restroom 4-5 times a day (the most ever for me was maybe 10) there is a bit of clear mucus in my stool and my gut definitely feels a bit on the queezy side, I haven't experienced the fullnes feeling in my rear end, which was terribly uncomfortable and I've had no pain the last 2 days during my BMs which is such a relief. I really do feel like I'm getting better.

I HATE antibiotics. I'm going to stay off of those until my body tells me I have to get back on them.

Can the probiotics cause a gassy feeling and loose stools?

To be graphic. Mine are loose, but not watery.

Again, thank you guys and gals so much for the support here.

I know you guys aren't doctors, and I understand everyone is DIFFerent :) but does this sound like I'm getting better to you guys?

getwellsoon
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Re: Not sure what to do

Postby getwellsoon » Fri Sep 04, 2015 6:09 am

Yes, probiotics can cause gassiness and loose stools. Some people cannot tolerate them. If you are having problems I would cut back or even cut them out for a few days. Glad the painful area has cleared up. I had that also and it went away also. Good luck and hope you continue to feel better and better.
CAROL

Lisa33
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Re: Not sure what to do

Postby Lisa33 » Fri Sep 04, 2015 8:46 am

When I first started taking probiotics, they made me gassy and bloated. It didn't bother me that much, so I stuck with them and after a while, my body seemed to adjust to them and the gassiness and bloated feeling went away. If you are experiencing much discomfort and it's not tolerable, you may want to cut back and see what happens. It sounds like things are improving for you, which is great.

Lisa

s4boost
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Re: Not sure what to do

Postby s4boost » Fri Sep 04, 2015 11:46 am

It's tolerable. Just wanted to have an idea of what's going on in there. That helps a lot. I'm gonna stick to it and hopefully my gut will adjust. I'm feeling pretty optimistic at this point. Ready to have my life back.

Lisa33
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Re: Not sure what to do

Postby Lisa33 » Fri Sep 04, 2015 9:01 pm

I don't blame you. I remember saying those same words too. You just want things to get back to normal. And, they definitely will. Hang in there, and wishing you continued improvement!

Lisa

s4boost
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Re: Not sure what to do

Postby s4boost » Tue Sep 08, 2015 12:46 pm

Well. I had another flare up last night. So I started my vanco taper today. :/

I cannot wait until my ID appointment at Vanderbilt. Really hoping they'll put a stop to this nightmare.

sdotlow
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Re: Not sure what to do

Postby sdotlow » Thu Sep 10, 2015 3:18 pm

Hi Walter, sorry you're going through this. I just recently relapsed, and started Vanco last night. I woke up this morning with that acid like D, and had an appointment with my GI so I was able to inquire about it. I was told it has to do with the inner portion of the rectum being very irritated due to the D. I was advised to try using Desitin cream, and to put it on a finger and apply, going about the first knuckle inside of the rectum. It's supposed to relieve the issue to some extent. I'll probably grab some in the next day or so if it's still an issue, and I'll let you know how it works out if I do.

ResearchGrandma
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Re: Not sure what to do

Postby ResearchGrandma » Thu Sep 10, 2015 3:42 pm

Hopefully you are planning on using a gloved finger for that little task. I have found that disposable gloves save my hands from being totally raw from overwashing.

achan
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Re: Not sure what to do

Postby achan » Fri Sep 11, 2015 11:55 pm

Walter,

It sounds like you've been through the wringer with this. My c diff has been similar to yours in a way... just more spread out. I came down with it for the first time two years ago when I was 23. I'm 26 now and just had an FMT after failing a taper.

C diff is funny. Sometimes you just have to trust how you're feeling. I've had relapses that had classic c diff symptoms and I've had relapses where I had formed BMs but was going all the time. I've never had a high white blood cell count either, not even when I was admitted into the hospital for it. I think they were raised, but they didn't rise above normal. The doctor did say that the count started to fall before they discharged me. Maybe the same kind of thing happens to you too. I just learned to understand and recognize a feeling of c diff. Every time but one that I've had that feeling, I've had a positive c diff test come back. The one time it didn't, I was tapering the vanco and down to one dose a day and they think it came back with false results. I've found that being in tune with my body has helped me as well. I think being so young, our bodies might react differently to it. The doctors and nurses who performed my FMT said that they don't really have a lot of data or info on c diff in younger patients because there just weren't that many young people coming down with it in the past. Apparently, it's becoming more common though.

As for the burning feeling down there, I get that all the time. Even when I was on Vancomycin for forever waiting to get my FMT. Your doc's probably right about the hemorrhoids. That's what mine were. They noted them during the colonoscopy for my FMT too. I used Aquaphor jelly with mine. It definitely helped with the pain and burning feeling.

Hope that the taper works for you and that you are feeling better soon!!
Amanda


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