Horror that started on the 4th of July

[chris88888888]

First, I would like to thank the Admins, mods and members of this forum for providing a fantastic source of knowledge on this disease(the BEST source, IMO). Without it, I would feel totally alone.

I'm a 36 year old male who takes care of his 67 year old mother. She is mortally afraid of assisted living, etc, so I decided since I have the time and energy, to make sure she stays out of those places as long as possible.

It started this past 4th of July. My mother had been complaining of severe diarrea for several weeks and went to the doctor who prescribed Flagyl. She got better but stopped taking the meds and it became worse until she collaped unconscience twice the night of the 4th. I called fire rescue but she refused the ambulance, so I took her to the hospital. After I demanded a stool culture they found C Diff(she had been there two days with no relief).

She was give IV Flagyl and is now taking 500mg three times a day. She was discharged last Sunday.

That night I began having the same symptoms. Luckily, her GI had prescribed me some Flagyl, just in case this happened. Unfortunately, After three days, I began to experience neuropathy associated with Flagyl(numbness that started in fingers, began to creep up my left arm).

I was taken off the Flagyl and put on Xifaxan. Unfortunately, the symptoms began to return(might have been some pizza I ate too). Yes, I am not too bright in that regard. Called my moms GI(who knows I don't have insurance or much money) and believe it or not he suggested I go to wal-Mart, get a cheap blender, find a friend I trust, and give myself an enema with their stool sample. I was more horrofied at this point than any other. I told him I had a credit card for emergency's and, thanks to this site, I reccommended to HIM that I take Vanco. He said "sure, if you can find it." "I'm going on vacation right this moment and don't have time for this but I'll leave you a prescription at the desk in case you find some."

In my first stroke of luck since this began, the pharmacy a mile away had the 250mg Vanco capsules. I've been on them since yesterday, and hopefully I will beat this thing.

My mother seems to be doing really well on the Flagyl and feels MUCH better. I have not told her about this site, or what I've read, for fear of upsetting her about a possible relapse(although her doctor did tell her some about the risk.

I've been having panic attacks myself(with palps) since this started, which I've never had before.

Thank you all for this forum and the opportunity to tell my story.

I scared at this point but knowing there are supportive folks with the same problems does help some. Its nice to not be alone.

Sincerely,

Chris

[Marcia]

Oh Chris so sorry to find yourself in this situation, but as you see here.... you are not alone. I had C Diff for about 2 months, and it's been 10 months i have been off treatment ( i was treated with flagyl 2 times after i relapsed once) needless to say i still fear c diff and feel that i will always fear it's existance.
Another thing i found incredible is what your doc told you about giving yourself an enema. It's hard to find a doc who will perform the infusions themselves much less tell you to go get a blender and do it on your own. Although it sounds crazy and disgusting fecal infusions have a high cure rate (90%) if done well and with the right donor.
Another thing is the doc should of tested your for C Diff before giving you the flagyl since it was the first time you felt the symptoms. C Diff is transmitable from feces to mouth. That's if you use the b-room or helped your mom change and did not wash your hands properly and ate something afterwards something like that, read FAQ's sections about hygiene.
Read about Probiotics, for starters if you can tolerate yogurt i'd suggest start eating lots of it now same with your mom. Spend time slowly reading all the info provided here, there is lots anything you can think of, it's here. I'd suggest you get some answers to wether you have c diff or not before you take that trip. It will be very difficult to enjoy your vacation and you get a major attack. Another thing is STAY AWAY FROM ALCOHOLIC DRINKS!!!!

[chris88888888]

Thanks Marcia.

I will read everything.

FWIW, its not me going on vacation, its my moms GI. That's why he told me to do the infusion at home.

I had to have C Diff I figure. Same stool symptoms with beginning abdominal pain. I just don't have the money for tests, etc. Though I am looking in to some indigent care programs thanks to links on your site.

She had been doing the cooking of late and I believe this is how I got it. Plus, I was at the hospital day and night without knowing what she had at first. So I didn't practice all the hygeine that I could have.

That has changed. Bleach is all over the place.

[Marcia]

Well sorry for the misunderstanding, i tend to go fast when i read i guess.
MMM well testing for c diff is cheaper than if you was taking the vanco and not have c diff. But you do say you have same symptoms so unfortunately you might of acquired it. Try to wash your clothes separate than hers although if you both have it not sure if it matters. My husband and daughter were exposed to it since i spent 2 full weeks thinking i had a stomach flu so i did not take precautions i should of if i would of known. Luckely they did not get it. Right thing you are doing about the bleach.
Make sure you try to avoid milk, cheese, spicy, greasy foods. If you have a Walmart they have Culturelle capsules which is a probiotic. Activia yogurt claims to regulate the stomach. Stay strong, times will be tough but you seem to have the right spirit and know that most people recover with one or two rounds of treatment. Make sure you have the right dosage. I think for vanco the max dosage is 4 pills a day at 250 mg.

[chris88888888]

That's what I'm taking, 250mg Vanco, 4 times daily. Hope I'm not taking too much too soon. Although that is all the pharmacy had.

I guess I better get myself to a doctor of my own. I wish I'd known about this site prior to all this happening. I'd have been better prepared. No sense in what ifs I guess but its hard not to think I've made mistakes that have contributed to this. At times I feel like getting my mom and myself and leaving the house until the spores have for sure died on their own. But where to go? Plus, I think thats me wanting to overreact. I may have scared myself reading some of the stories on this site. Then again, too much info is better than not enough!!

I'm currently taking acidphillus(spelling?) Can I take this as long as I want?

Thank You

[Bobbie]

Chris8888888,
I admire you for taking care of your mother. Don't waste time "beating yourself" up for things you haven't done or could have done differently. How were you to know about C. diff.? Most people have never heard of it. You've done an excellent job of handling this.

You need to find a doc. of your own. If you are on Vanco., however, you will probably test negative. See FAQ-Tests. 250 mg. 4X a day is one of the higher doses but sometimes works if the usual dose of 125 mg. 4X a day doesn't. I am amazed your mother's doc. gave you a prescription for it w/o examining you.

Marcia gave you excellent advice. Read FAQ-Hygiene. If you have 2 bathrooms in the house, you & your mother should use separate ones. If not, use bleach (l part bleach/9 parts water or a cleaner containing bleach) after every use. Don't forget to clean the faucet & door handles.
Washing your hands is the most important thing you can do to protect yourself and others.

Probiotics work for some & not for others. They are worth a try. Info. about them is also in FAQ. Some people take them for years.

Keep us posted.

[chris88888888]

I will do that..get to a doctor.

I will take all of your advice. It is very much appreciated.

I will report back when we're off antibiotics(she goes off next week, me not for another 8-9 days), or when something changes.

Thanks again for this wonderful site, and the members and admins who make it possible. Being a guy I wasn't sure if I'd be welcome, and I've surely felt welcome.

Hoping for the best for all of you,

[Bobbie]

Chris,
Thx. for the thx. Remember, 80% of all C. diff. sufferers recover with one to two rounds of Flagyl or Vanco. We hope you will be in the lucky 20%.

[Barbncco]

Wow, Chris, you sure have a lot on your plate, but it sounds like you are taking charge of everything. I just wanted to respond and let you know you're not alone out there. CDiff knows no boundaries~~race, age, religion, none of that matters. Keep us posted about you and your Mom. Wash those hands! :)

[chris88888888]

Thanks for the kind words.:)

Have a possible problem.

My mom is due to come off Flagyl Today. Her first bowel movement was alright, but the second bowel movement of the day was watery. Does this mean she is/might be relapsing, or is it possible for this to happen and everything still be alright? My stress level has jumped way up this morning.

My doctor has me on cloazepam to calm me down but doesn't do much good in a situation like this morning.:(

Any feedback would be much appreciated.:):)

Chris

[Marcia]

Has she been doing generally well with flagyl???
Just to let you know, her bowel movements won't be returning the same as they were before. It's gonna be a new normal (from my experience)
So perhaps she ate something but it took me 6 days to relapse and from what i've read it happens within a week or two.
Make sure you discuss with her or your doctor about developing a plan on what's next to do if indeed she relapses again.

[chris88888888]

Thanks Marcia

Yes, she seems to have done well on the flagy, up until today. Today was supposed to be here last 500mg Flagyl pill.

First bowel movement was, as you say, not normal, but the new normal.

She has been eating basically the same thing throughout. She really likes braunshweager sandwiches and eats one or two a day with a bannana or two. I also found some info here about boiled chicken and have been giving her that to eat as well.

She had a hiatal hernia surgery in february I believe it was and has trouble with eating too much, and feeling full after small portions.

I'm just scared to death the Flagyl is not really working. She also has serious hearing loss which requires hearing aides(runs in the family) and am afraid of what switching to vanco might do as I've read that folks with hearing loss might not be wanting to take Vanco.

I have tinnitus myself and the vanco seems to make it worse. The primary care doctor I just found took me off it for a day(vanco), and the ringing got better. He told me to begin taking it again today along with the clonazepam.

This is all some scary stuff. I I lose my mom I'm not sure I can take it. We were both feeling pretty god yesterday and even went for a drive. Although she gets winded easily from fatigue.

One other thing. We have been eating some bacon lettuce and tomatoe sandwiches. Seemed like a simple tasty meal. Are you girls aware of any issues with this?

Thanks again for your support.:):):)

Chris

[Marcia]

I wouldn't be sure about bacon as it's pork, fried and greasy. Sometimes tomatoes give me like a bloating feeling specially from spaghetti sauce. Make sure the lettece is well washed.
From what i've read the hearing problem with vanco is when it's taken intravenuously, not in the pill form but again i never took vanco, only flagyl so someone could tell you on that. On Treatments (vanco) sections there are a lot of members posting their side effects from taking it, if you could read up on that.
Even when she gets rid of it, she will have on and off days. It's been almost a year for me (this time this year i was going through hell) and still some days are better than others. No D but very soft at times.

[chris88888888]

Another update(I sincerely apologize for my constant postings but I've got bo one else to talk to, and there's always that hope that something I say might trigger something in your heads as to what I'm doing right or wrong)

My mom just had another bowel movement, two small quarter sized chunks, no liquid(I'm so very sorry for being so grapic).

Her doctor just returned our call and he wants a stool sample even though she's been on the flagyl, basically just wants to see what's up(will take it up there tomorrow. From what I've read we can freeze it if necessary? He wants more samples next week as well. I know from reading this site that a false negative is possible, but I guess it doesn't hurt to do it anyway just to stay on top of things. She does have a small appetite and wants some tuna and noodles for dinner. Just plain noodles with some butter and tunafish.

I read the sections you directed me too, and lo and behold I had read it before(I've been reading so much on this site, its consumed me. I even read Dr. Brody's article. But did miss one thing in that reading. There are some reports in there of folks absorbing the oral vanco into their system. Probably not enough to casue the tinnitus, but they did develop some strange symptoms. With the way my luck is going, I'm absorbing some. That is very bad as I've had a history of kidney problems and that is not good if you want to get the vanco removed from your bloodstream.

Everything that can go wrong seems to be going wrong. I must MUST take the advice here and try and stay calm as I know stress does not help this situation.

Any thought on any of this are very very welcom:):) Sorry again about the graphic nature of the stool thing.

Chris

[Marcia]

Just to let you know if you feel the need to explain bathroom habits there is a "Too Much Information" section incase you have not noticed. Try to stay calm and develop a plan with your doc. If you are not satisfied look for another one that is why you are paying for it.