I am FED UP!

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RomGrl
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I am FED UP!

Postby RomGrl » Sun Mar 05, 2017 8:34 pm

I AM SO FED UP.

I started Vancomycin 500mg a week ago because I 'relapsed,' and instead of getting better on the medicine for the first time I GOT WORSE. I was going about 20-30 times. I finally met with my GI and he told me to get off the vanco since it's not working and now he wants to check for small bowel Crohn's disease. I get that he is just trying to cover the bases but I'm so frustrated....

Is it even possible to get worse on vanco? While I was going 20-30 times a day I had a negative stool test for c-diff (but I was still on 500mg of Vancomycin). I don't know what to think anymore....

Thoughts, support anyone that can shed some light and make me feel like life is actually worth living would be nice. I don't want a diagnosis I want hope because as of right now, I see NO HOPE, no future, no anything for me.... I wish God could just take me in my sleep, this is how c-diff is making me feel....

It has the same smell, same cramping, same EVERYTHING. I've never had Crohn's disease... never... I never had issues with my bowels till stupid cdiff.

Last doctor note( PLEASE, any thoughts would be nice).

"(RomGrl) most likely has refractory C. difficile colitis unresponsive at this point to vancomycin as she has had some relief while on therapy but not sustained. Interestingly, her last 2 stool samples were negative for C. difficile while on vancomycin. This could reflect a false negative but also it is possible that she has a postinfectious IBD D or IBS. A capsule endoscopy will be needed as she has recently had a fairly negative EGD and colonoscopy and could have isolated small bowel Crohn's disease. If this is negative, and empiric FM T may be considered. "

Davidtm
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Re: I am FED UP!

Postby Davidtm » Sun Mar 05, 2017 8:47 pm

Hang in there. I've felt how you are feeling before and feeling hopeless that you won't be cured. I'm not a dr but would think if you're testing negative while on the meds it would be something else causing the symptoms. If it makes you feel any better I got the stomach flu while on vanco last year and had to use the restroom many many times a day. I was tested to make sure the vanco wasn't failing and came up negative by pcr. It was confirmed then that I had stomach flu and it wasn't c diff causing my symptoms. It's good you have the dr running more tests to find out what else could be causing your symptoms. Stay strong and hang on to any positive you can. The fact he said fmt was a possibility for treatment in the future sounds good.
We've all felt the lows of this disease and I hope you find resolution very soon.

MKW
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Re: I am FED UP!

Postby MKW » Sun Mar 05, 2017 9:52 pm

My heart goes out to you RomGrl, and I have felt exactly how you are feeling. I have had a lot of hopelessness throughout all this. And ANGER, like you. But, I think IT'S OK to get angry- in my opinion. Because this is YOUR LIFE. And a lot of us are or have received very inadequate, inexperienced medical care for this condition. AND we are paying a fortune for it. ...For me, the only thing giving me hope right now is that I have finally found a doctor recently with REAL experience at effectively treating people with recurrent C Diff.
I really shouldn't comment on anything medical since I have NO medical training, but it seems odd you would have such extreme symptoms while on the Vanco unless there was another cause. If you've had a virus, then you will get better. If you have developed IBD of some type as a result of having C Diff that would be an ongoing problem. It is good your doctor is planning to do further testing to rule this out, and good he is open-minded about the possibility of the FMT procedure. I guess the important part is - do you trust the care your doctor is providing you? If you are feeling you don't, find someone else. Get that second opinion you know.
I hope that your doctor is at least helping you with your symptoms or that your symptoms have improved. You have got to be in rough shape if you have been that sick. Just please know that you are not alone, and try to have hope that you will receive the care you need.

RomGrl
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Re: I am FED UP!

Postby RomGrl » Wed Mar 08, 2017 4:05 pm

I've been so sick and the vanco is still not responding. I did a pillcam today... i'm just ready for the FMT.... I can't keep doing this... Thank you to everyone who posted.. I'm sorry for being so negative... I just don't see a light anymore...

roy
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Re: I am FED UP!

Postby roy » Wed Mar 08, 2017 4:17 pm

Can you remind me how old you are.

RomGrl
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Re: I am FED UP!

Postby RomGrl » Wed Mar 08, 2017 7:02 pm

roy:

I'm 26 Roy... I'm not sure I ever did a formal introduction post and I should have but tbh I may have I don't rememebr. Hope you've been well.

roy
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Re: I am FED UP!

Postby roy » Thu Mar 09, 2017 7:55 am

At 26 c.diff should be just an inconvenience.
I have read all your previous posts and noticed something interesting.
You say you were misdiagnosed for 6 months.
Probably not correct and all the antibiotics you took during those months might be what caused a positive c.diff result.
It might not be what's causing your symptoms though.
Your not responding to c.diff meds and being so young that's not very likely if it's c.diff causing the problems.
Also your testing negative!
Back to the 6 month period.
You bought a puppy at around the same time as your illness started and that puppy was sick with a GI bug.
Vet said Parvo, but parasites can also give similar symptoms and a lot of dog bugs can pass to humans.
Some only show up in stool samples for a few hours a month and are easily missed.
Then there's things like celiac (26 is around the prime age for that to be diagnosed) and lactose intolerance that needs to be ruled out.
I know your thinking an FMT might cure you but testing negative and not responding to c.diff meds suggests continuing to blame c.diff might not be right and there should be further investigation before an FMT is tried.
Only thinking aloud.

Musings
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Re: I am FED UP!

Postby Musings » Thu Mar 09, 2017 9:27 am

Am leaning towards Roy's thought process that you might not be battling c. diff. Vanco can cause GI upset so if you are not experiencing an active infection of c. diff can see how it might makes the situation worse. I would talk to your doctor about doing an expansive stool culture to rule out other parasites, etc.

~Lauren

PattieF
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Re: I am FED UP!

Postby PattieF » Thu Mar 09, 2017 12:56 pm

Hang in there! This is a horrible illness. As Roy said, it might be lactose intolerance or maybe you've developed food allergies. I would check into something like that before anything too invasive since you are so miserable already. Hugs

MKW
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Re: I am FED UP!

Postby MKW » Thu Mar 09, 2017 1:45 pm

Hi, I just wanted to say after reading Roy's post you should re-think along those lines...that something may not be diagnosed properly with you or has been missed. What do you attribute your development of C Diff to? did you take any antibiotics or were you exposed in a health care setting,etc.? Also, your doctor's notes "refractory C. difficile colitis unresponsive at this point to vancomycin" are a little weird to me. The doctor is just concluding it's unresponsive instead of considering there could be another pathogen involved that would not respond to the vanco. If your diagnostic testing is inconclusive you should inquire about further stool culturing like Musings suggested.

RomGrl
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Re: I am FED UP!

Postby RomGrl » Sun Mar 19, 2017 3:29 pm

Turns out my c.diff diagnosis started a flare (which I never knew I had) for IBD, diagnosed 4 days ago with Crohn's disease. Nobody in my family has ever had crohn's so I'm pretty upset. C.diff is gone two negative EIA and one negative PCR.

Benh
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Re: I am FED UP!

Postby Benh » Sun Mar 19, 2017 4:10 pm

Wow, well at least you have a diagnosis now. Crowns is serious but there have been some very good advancements in recent years. I would make sure to see the best dr you can find that has experience with it and be aggressive with treatment. I wish you well.

georgina
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Re: I am FED UP!

Postby georgina » Mon Mar 20, 2017 8:49 am

So sorry you tested positive for Crohn , first Cdiff , now this ,you must be really upset. There are several treatments these days to control Crohn disease , you just have to work with your GI to find the right one . FMT is also a option to consider , helps with Crohn as well.
Sending positive vibes your way for a speedy recovery!

RomGrl
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Re: I am FED UP!

Postby RomGrl » Tue Apr 11, 2017 12:28 pm

georgina:

I've been beyond depressed.... I find myself laying down doing nothing more than I have ever in my life. I'm only 26 years old. I feel broken. And we thought it was gone but now we aren't sure, it might be back again but at this point. I just don't care anymore.

Whatever God wants.... It's in his hands... This is out of my control... But I am so sad.

Musings
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Re: I am FED UP!

Postby Musings » Tue Apr 11, 2017 12:43 pm

It is not out of your control. As others have mentioned, there are many treatments today for Crohn's and many people live good lives with the disease.

Understandably, a diagnosis like this can lead to depression. If you haven't already, would find a therapist with experience helping patients with chronic illnesses. Your mental health can be just as important as your physical help.

Hope you find a good treatment plan soon and start to feel better.

~Lauren


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