I was wondering

Please limit your post to questions only. You can ask multiple questions in the post. (One post per person per day about yourself. See exception in General C. diff.Discussion.)
hoverup
New User
Posts: 11
Joined: Fri Sep 30, 2016 7:12 pm

I was wondering

Postby hoverup » Sun Oct 23, 2016 4:50 pm

It started back in August I'm 31 f with a 4 y old son I was put on antibiotics for a jaw infection so they say that is how I got this. Long story short I've been on vanco since august as soon as I stop treatment within only a few short days I have it again. This is my third go round with this and they put me on a longer taper however since I went from 4 times a day to three times a day I've been dealing with more diarrhea and I've been plagued with being so tired I don't want to even get out of bed. My question is is there a light at the end of the tunnel? And can a test be wrong? They want to do a colonoscopy on me however my body is to weak right now to do it. I'm worried if I do it that I won't wake up. Any advice would be great I've been eating 3 yogurts a day plus taking probiotics and I've been trying to eat lots of prebiotic too I've cleaned my house top to bottom with bleach water for the last few months and it's not seeming to work. I was tested again a few weeks ago and it came back negative but they put me back on meds in case and now I've got diarrhea again.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: I was wondering

Postby amyc » Sun Oct 23, 2016 7:21 pm

I'm so sorry you're so sick. It seems like there must be a new strain that's making even young, healthy people really sick. I would recommend you go to a big medical school or specialty hospital with a C diff specialist or department. Johns Hopkins, Mayo, Harvard, Duke, Stanford, somebody affiliated with NIH or CDC in Atlanta? Hopefully some moderators can chime in with other suggestions, but that is the way I would go. You need help from a true expert, and deserve an answer to what is going on. And you aren't the only young person who is struggling so hard, so I really have to wonder if it's a new strain that only big academic centers have dealt with.

I would definitely ask about Dificid too.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: I was wondering

Postby amyc » Sun Oct 23, 2016 7:23 pm

Prebiotics give me lots of diarrhea, so try stopping those to see if it helps.

beth22
Long Time Contributor
Posts: 9109
Joined: Tue Apr 07, 2009 2:23 pm

Re: I was wondering

Postby beth22 » Sun Oct 23, 2016 9:54 pm

I found when I had c diff, I had to stop eating yogurt. It gave me D. Maybe the same is happening with you. Probiotics also give me GI upset unless I take small doses. As long as you are on vanco, maybe try to stop the yogurt for a few days and see if it makes any difference. I also agree with Amy about going to another doctor affiliated with a major hospital or university.

georgina
Long Time Contributor
Posts: 2053
Joined: Sat Sep 12, 2015 10:07 am

Re: I was wondering

Postby georgina » Mon Oct 24, 2016 12:38 am

You are taking a lot of probiotics and those might give you the upset tummy!
I had the same problem with yogurt , can't eat any because it gives me sooo much gas and bloating and looser stool and I'm not lactose intolerant because I can eat cheese and butter with no problem. Cut back from yogurt a day or two and see if things improve. If you do not get relief you need to go back to your doctor and see if the dosage need to be revised or maybe you should discuss about Dificid as Amy suggested. Good luck!

hoverup
New User
Posts: 11
Joined: Fri Sep 30, 2016 7:12 pm

Re: I was wondering

Postby hoverup » Sat Oct 29, 2016 8:52 am

I haven't been able to eat since I got out of the hospital I feel like I have a full stomach and I'm not sure why. Is this normal during this? I've been plagued with no energy at all but I keep trying to do things I normally do. Some of the simplest tasks I can no longer do so they have set up on home health care to help me until I can get the energy to do things again at first I was eating fine but I do notice anything spicy gives me d, anything with milk if it's not cooked gives me d, and no sweets or I get massive d. I'm out of things to try that won't give me d. I'm taking 1g of a probiotics in capsule form called florastor plus 3 yogurts a day and I can't eat prebiotic because it gives me gas and d.

roy
Long Time Contributor
Posts: 2961
Joined: Sat Aug 02, 2014 1:05 am

Re: I was wondering

Postby roy » Sat Oct 29, 2016 10:59 am

Most posters who have been left with IBS say those things cause them problems!
That's the difference between IBS and c.diff.
With active c.diff nothing that you eat makes a difference, you still have watery D many times a day.
With IBS food or drink triggers the D.
Bland simple food like oatmeal, rice, toast, bananas (potassium) seem to be best.
Spice, coffee, alcohol, raw food, dairy, and sugar are all irritating to a sensitive gut.
Yoghurts are tolerated by some but others can not eat anything dairy.
The probiotics in youghurt are killed by vanco so it might be better to cut them out and see if you improve.
I truly can't see why you were given meds after a negative test " just in case " unless of course you had severe D that indicated c.diff.

georgina
Long Time Contributor
Posts: 2053
Joined: Sat Sep 12, 2015 10:07 am

Re: I was wondering

Postby georgina » Sun Oct 30, 2016 1:11 am

I couldn't tolerate yogurt and milk and i'm not lactose intolerant , i eat cheese with no problem and butter , but the yogurt and kefir gives me massive gas and bloating. For me :potatoes , eggs , vegetables soup , meat , rice , bone broth were my best friends when i had my worst days.Prebiotic is actually high fiber and yes , it will give you diarheea , your irritated gut cannot tolerate high fiber so soon after meds.

beth22
Long Time Contributor
Posts: 9109
Joined: Tue Apr 07, 2009 2:23 pm

Re: I was wondering

Postby beth22 » Sun Oct 30, 2016 2:10 am

I could not tolerate yogurt either and when I stopped it, my symptoms improved. I also could not tolerate Florastor. It gave me a lot of gas, cramping and D. I had to try various probiotics before I found one that I halfway tolerated. I would stop the yogurt for a few days and see if it makes a difference.

Ril
Long Time Contributor
Posts: 1209
Joined: Sat Oct 27, 2012 2:45 pm

Re: I was wondering

Postby Ril » Sun Oct 30, 2016 8:56 pm

I assume you are seeing a GI dr experienced in treating c diff?
The first thing that came to mind when I read your story is exactly what Roy asked- why were you prescribed meds "just in case" after a negative test? I honestly have never heard of that.
And I also wonder if this is all c diff. D from C diff is not usually related to what foods you eat. Your symptoms are sounding an awful lot like the food intolerances I, and many others, developed after c diff. It is common to develop PI IBS and intolerance to things like sweets, dairy, raw veggies and high fiber foods, etc.
You might want to discuss these things with your dr.

Rita

hoverup
New User
Posts: 11
Joined: Fri Sep 30, 2016 7:12 pm

Re: I was wondering

Postby hoverup » Wed Nov 02, 2016 6:23 pm

When I tested negative they had already restarted me on the vanco so the doctor said it was best to stay on the vanco. I've never had so much d in all my life I'm talking 12 times a day for the first few days I was in the hospital. I just got out of the hospital I went to a university hospital because that's the only one in driving distance of me I live about an he west of Saint Louis Missouri. I looked online for other doctors in my area that specialize with cdiff but was unable to find one near me. My GI dr is in the university hospital I was being hospitalized for c diff.its very frustrating dealing with it. Since my taper is now once a day my stomach hasn't been bothering me as much but I still have the constant urge to go. Will that go away eventually? They have me scheduled for a lower and upper GI next Friday which is the day after I finish the vanco. He wants to make sure there isn't more doing on because I've had issues with blood in my d and oily d. I am always so tired. I had a very rare effect from the vanco that only happens from IV vanco but I've been having it since I started the oral vanco it's called red man syndrome so I also have to take Benadryl every time I take the vanco. I can barely function during the day. What would you suggest? I've been seeing my GI dr now for 4 years I had issues before I got c diff with d and blood in stool and urine but before they could get me scheduled I ended up sick with the c diff.

georgina
Long Time Contributor
Posts: 2053
Joined: Sat Sep 12, 2015 10:07 am

Re: I was wondering

Postby georgina » Thu Nov 03, 2016 1:24 am

If you feel like Vanco isn't helping much , discuss about a course of Dificid with your doctor.

beth22
Long Time Contributor
Posts: 9109
Joined: Tue Apr 07, 2009 2:23 pm

Re: I was wondering

Postby beth22 » Thu Nov 03, 2016 1:29 am

I agree with Georgina. If you are getting red man syndrome, it's time to switch meds anyway. You have the perfect reason for your insurance to cover it - you have an allergic reaction to vanco.

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: I was wondering

Postby amyc » Thu Nov 03, 2016 3:45 am

The feeling like you have to go all the time is not unusual as long as you aren't still having D. How much longer do you have to take one vanco a day? Can you take it at night so the benedryl will just help you sleep instead of having it knock you out during the day? You could take a non-drowsy antihistamine in the morning.

I'm surprised to read your doctor kept you on vanco with red man syndrome. If you are super close to finishing it, um, I'd try to switch to taking it at night with the benedryl at least. And ask if a non-drowsy antihistamine would be OK for daytime.

hoverup
New User
Posts: 11
Joined: Fri Sep 30, 2016 7:12 pm

Re: I was wondering

Postby hoverup » Thu Nov 03, 2016 9:05 am

I'll be done with the vanco next Thursday for my taper. It works great while it's in my system and the pain goes away but then it gets out of my system and then I feel like I have to go constantly. I never felt like this the last two times I had this. By pain I mean it keeps me awake at night and no sleepy for three to four days at a time pain. When I've called to talk to my dr they basically brush me off. I've never known pain like I do now. I tried switching to at night but made my stomach hurt more during.


Return to “Questions about Clostridium difficile”



Who is online

Users browsing this forum: No registered users and 2 guests