Want to pull the sheets over my head and not come out

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lookyloo
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Want to pull the sheets over my head and not come out

Postby lookyloo » Wed Aug 17, 2016 5:51 am

Hi all. One week past mu c diff diagnosis, but I've been dealing with this for 3 months. I certainly don't have as severe a case as many of you, but having daily D and pain is robbing me of life. I start day 8 of Flagyl today with no improvement of my symptoms. Today started off a little bit worse, actually. The dr wants me to complete. Everytime I tell my husband that I am not getting better he says it's the last hoorah. I got up with the alarm but crawled back into bed after watery D. It would be so easy to just crawl into bed and not come out....so I forced myself to get up. I need to rant because I just feel unsupported. No one wants to deal with a sick person. Many invitations declined with " I'm not feeling well" lead to people not even calling anymore. The close friends that I have shared my diagnosis with say you'll be fine just take your meds. It's just D. Yes....we've all had D. But when it's 3 months with no end in sight...well they don't get it. I'm up. I'm gonna feed the dogs ( not up to walking them.....again) I'm letting them down and I it feels so easy to just give up and crawl into bed and let life REALLY pass me by.

Sorry...needed to rant. Feeling low and the hope I had at starting treatment is disappearing.

georgina
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Re: Want to pull the sheets over my head and not come out

Postby georgina » Wed Aug 17, 2016 6:11 am

Why don't you try to push for vanco or dificid?? Why doctors insist on leaving patients in so much misery when is clear that the flagyl does not work?? Call your doctor again , explain him your symptoms and demand to try other treatments , be persistent !! I had lots of side effects from flagyl and couldn't tolerate it , and demanded to get switched to vanco even though my doctor wanted me to complete the ten day course (I only made it to day 7). When I got switched it was like a night and day difference , the D stopped , the uncontrollable vomiting stopped and I was actually able to eat a little chicken and rice.

amyc
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Re: Want to pull the sheets over my head and not come out

Postby amyc » Wed Aug 17, 2016 1:06 pm

I agree with Georgina, call and demand the switch to vancomycin. Flagyl isn't working, and the side effects are too much for you. Tell them about the depression and extreme light headedness and fatigue, and ask for the vancomycin. You have run through some terrible doctors, but hopefully this one will finally listen to you if you are persistent.

susant
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Re: Want to pull the sheets over my head and not come out

Postby susant » Wed Aug 17, 2016 3:41 pm

I agree with the others. Flagyl made me feel worse than Cdiff. Push for vancomycin. Hope you feel better soon!!

asully
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Re: Want to pull the sheets over my head and not come out

Postby asully » Wed Aug 17, 2016 5:12 pm

I understand exactly how you feel! C.Diff. is the most difficult infection to deal with, due to its recurrence rate. Those who do not have it will not understand how using the bathroom makes you cringe or how eating is now an option because you'll just end up in the bathroom 15 mins later anyway.

The only thing I can suggest to add to the medicines you are prescribed is to change your diet as well. Take a probiotic 2-3 times a day (one that has lotsss of live cultures), also eat fermented foods or yogurts with live cultures. You want to get as much "good bacteria" back into your system as possible. I also did research on activated charcoal, which is supposed to flush/capture everything when traveling through your system. (Definitely do research on taking that before you take it) And also, Vancomycin will be your go to drug for severe cases!

roy
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Re: Want to pull the sheets over my head and not come out

Postby roy » Wed Aug 17, 2016 5:19 pm

Looked at the title of this thread and had to laugh!
If your going to pull the sheets over your head.
I hope you like the smell of farts:-)

lookyloo
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Re: Want to pull the sheets over my head and not come out

Postby lookyloo » Thu Aug 18, 2016 10:42 am

You have to be kidding me Roy. Who can trust farts anymore. Think it would be a gamble in lose. LOL.

Seriously, feel better than yesterday, which is still generally crappy. Day 9 of flagyl and no real improvement. I called the doctor, I know she is on vacation, but she had told me her office was open. Apparently not until tomorrow. Looks like I plug ahead with the flagyl. Is there anyway it can be making the cdiff worse? I start getting in my own head and scare the literal shit out of myself.

beth22
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Re: Want to pull the sheets over my head and not come out

Postby beth22 » Thu Aug 18, 2016 11:29 am

I don't think it will make the c diff worse, but it may not be making it better either. However, Flagyl is prescribed for other conditions - giardia, for example, and it is a harsh medication for some people. It can cause D, so the fact that you have D is not necessarily that it is c diff, but could be the antibiotic giving it to you despite killing the c diff. I agree with the others about switching. I assume that tomorrow is your last day of Flagyl anyway. I would contact the doctor's office and tell them what is going on. If they want you to take more Flagyl, I would insist that you have too many side effects from it and ask for either vancomycin or Dificid.

asully
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Re: Want to pull the sheets over my head and not come out

Postby asully » Thu Aug 18, 2016 11:51 am

Definitely looks like Vancomycin may be the necessary switch. Also be sure to be taking a really good probiotic (like Florastor or Rheuteuri) more than once a day. You can take probiotics as much as you like actually, it will replenish good bacteria while the Flagyl or Vanco is doing its job. I also suggest trying foods like non-sweet yogurt that states "live cultures" on the container, bananas, broth, brown rice and even coconut milk. Also drink plenty of water! Even though eating doesn't seem ideal, you have to remember that the more you eat, the more bowel movements, the more the bacteria gets filtered out of your system! I also have heard great success with "activated charcoal", this is a supplement you can find in pill or powder form at most stores like walmart, or vitamin shoppes. Hope this all helps!

Lisa33
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Re: Want to pull the sheets over my head and not come out

Postby Lisa33 » Thu Aug 18, 2016 11:52 am

Another vote to insist on being changed to vanco. It doesn't sound like the Flagyl is working at all. After I relapsed on Flagyl, my GI at the time put me back on Flagyl again. I was never so sick from this med. It took me 9 days of misery to be switched to vanco finally. Don't suffer another day. Be persistent to be switched to vanco. As Georgina said, it was like night and day for me as well.

We all know how you feel right now. It feels like you will never get out of bed again and get your life back. But, you will!! We all did. It is hard for a lot of people to understand what you are going through. True friends will not write you off though.

Feel better,
Lisa

lookyloo
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Re: Want to pull the sheets over my head and not come out

Postby lookyloo » Thu Aug 18, 2016 1:25 pm

I stopped the florastor when the D got worse as per the doctor's direction. Forastor did not agree with me. I am taking Garden of Life gluten and dairy free probiotics a day. I actually have activated charcoal in my cabinet from when my dog ate lily of the valley. I'll take a look at it.

asully
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Re: Want to pull the sheets over my head and not come out

Postby asully » Thu Aug 18, 2016 1:57 pm

Maybe take more of the probiotics you have more than once a day, also do not take it within a two hour range of taking the Flagyl or Vanco. I just recently learned this and it makes a lot sense. As long as you are staying hydrated and eating so you can keep things moving, you may see a difference with the way you feel! Just be sure the probiotic you're taking has range of billions of cultures, and can easily pass stomach acid.

amyc
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Re: Want to pull the sheets over my head and not come out

Postby amyc » Thu Aug 18, 2016 5:23 pm

Activated charcoal might bind up the antibiotic, so I wouldn't take them together.

georgina
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Re: Want to pull the sheets over my head and not come out

Postby georgina » Fri Aug 19, 2016 2:06 am

Praying that today you can get your vancomicin , they should not make you wait longer!

lookyloo
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Re: Want to pull the sheets over my head and not come out

Postby lookyloo » Fri Aug 19, 2016 10:44 am

Ok. Got the vanco script. Wish me luck. Yesterday was a pretty good day and I was beginning to think I was getting better. Fast forward to 2 am, 3 am, 4 am, and finally just gave up and got up at 5 am so I can give my watery D all my attention. LOL.

So, in the lines of Jeff Foxworthy's "you might be a red neck if".....

You might have cdiff if...the difference between eating food or throwing it directly into the toilet bowl is approximately 20 minutes.


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