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Has anyone ever been diagnosed with c diff ?
      #364588 - 05/02/11 11:31 PM
njkate

Reged: 05/02/11
Posts: 4
Loc: New Jersey, USA

My first post here & apologies if it's in the wrong place... Am not new to the site & have been using Heather's acacia powder & teas for a few years now.
I was told for the past few years that I had IBS-- things got hairy after gallbladder surgery in 2006. I also have diverticulosis so who knows whats from what !

In December I was seen in the ER for severe abd pain - had CT scan & told it "looked like" I "might" have diverticulitis. DEveloped horrible "D" while in the ER but was sent home with antibiotics- thought I would die... when things continued to get worse I asked my primary doc to please check me for c diff-- and it was POSITIVE. I've been sick as a dog ever since- 3 rounds of Vancomycin- finshed just 3 weeks ago & last test was negative- holding my breath...

My GI doc apologetically told me he thought I may have been misdiagnosed all this time & may have had low grade c diff all along (have had many antibiotics over past few years & spent much time in hospitals & nurisng home with my parents..)

The "D" is somewhat better but I am still having cramping & constant feeling of urgency-- afraid to plan anything or leave the house.
Has anyone gone this route with c diff?
I still don't know if I have IBS or not-- have read that you can develop IBS after c diff, so one way or th eother I guess I should treat as such. Acacia is the only thing that soothes me for a bit it seems.

I have been trying to follow gluten free diet but I have been loading up on kefir ( milk product)-- maybe that is making things worse- I don't know- but I NEED the probiotics-- taking tons of those along with the kefir.
I am just so frustrated & sick of feeling sick...

Thanks for listening to my long saga..
Looking to communicate with IBS sufferers who have have had c diff for some advice. I've read every possible article on the internet & still lost.
Have an appointment with a very good GI in NYC for a consult but he can't see me until mid July.
njkate

--------------------
Kate
New Jersey

IBS, diverticulosis, recurrent c diff since Dec 2010
Have no clue what symptoms are from what anymore- trying to find my way back to a life...

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Re: Has anyone ever been diagnosed with c diff ? new
      #364664 - 05/08/11 03:14 PM
SarahMc

Reged: 04/20/11
Posts: 24


Hi Kate! I've had a LOT of experience with C.diff and would love to see if I can help you...or just share my story so you know you're not alone. If you post your email address perhaps we could chat?

PS - I'm a newbie too, but I think you posted this in the right place.

--------------------
Sarah, IBS-alternating

“I can do everything through him who gives me strength.” ~ Philippians 4:13

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Re: Has anyone ever been diagnosed with c diff ? new
      #364670 - 05/10/11 01:53 PM
Schnauzer1

Reged: 01/06/09
Posts: 28


Been there, done that – persistant C-diff is NO FUN!!.

One of the reasons that there often tends to be relapse after Vanco therapy is that Vancomycin is a broad spectrum antibiotic. Therefore, at the same time that it is destroying the offending C-diff organisms, it also is a destroying the other "good bacteria" that inhabit the GI tract … In turn making it easier for C-diff to continue to predominate. Hence, treatment with Vanco can and does sometimes become a rather circular situation of response -- and then relapse.

This is why it is important that you keep ingesting a bacterial product in attempt to try to keep the colon population of good bacteria as high as possible while taking any antibiotic. I tend to believe that a good quality, plain old straight ACIDOPHILUS product to always be a first line defense is dealing with this issue. The yogurts and kefirs, as well as other probiotics products, can come along as augmentation. But one need not be "drowning" themselves in these prducts either.

There is a new type antibiotic which has been in trials:
Name: Fidaxomicin. This is a "narrow spectrum" antibiotic which is aimed specifically at the C-diff organism, --- as a opposed to Vancomycin's broad spectrum action. You might ask your Physician to look into this product for you. See if you might qualify in any ongoing trials, or if this product may have made it's way into the market yet.


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Re: Has anyone ever been diagnosed with c diff ? new
      #364708 - 05/11/11 07:23 PM
SarahMc

Reged: 04/20/11
Posts: 24


Quote:

Been there, done that – persistant C-diff is NO FUN!!.




Ain't that the truth!




--------------------
Sarah, IBS-alternating

“I can do everything through him who gives me strength.” ~ Philippians 4:13

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Re: Has anyone ever been diagnosed with c diff ? new
      #364790 - 05/18/11 01:26 PM
njkate

Reged: 05/02/11
Posts: 4
Loc: New Jersey, USA

Thank you for replying...
Yes I have been following Fidaxomycin-- it should be on the market soon, but my pcp actually told me she would help me get it elsewhere if things don't calm down for me.
I actually had a few days in the last week where I thought I was improving-- not on my mind 24/7 curled up in a ball. But last 2 days are very bad again with cramping & urgency, burning & I'm now getting scare dthat I may relapsing. Time for another specimen to the lab... ugh..
I work from hoime but is still impossible the way I feel.
Have my dtr's college graduaiton Friday in NYC & don't know how I am going to do this...

I have been and still am on high dose probiotics-- several kinds, plus drinking kefir a few times a day-- don't know what else I can do.
My GI says there is no more he can do which is why I have an appt in July wioth the specialist Dr. Brandt who does stool transfers. I can go on feeling like this much longer.. I don't know..
Going to check & see if Fidaxamycin was approved yet-- i think it's the end of the month though.
thanks again !

--------------------
Kate
New Jersey

IBS, diverticulosis, recurrent c diff since Dec 2010
Have no clue what symptoms are from what anymore- trying to find my way back to a life...

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Re: Has anyone ever been diagnosed with c diff ? new
      #364791 - 05/18/11 01:32 PM
njkate

Reged: 05/02/11
Posts: 4
Loc: New Jersey, USA

Hi Sarah!
I'm sorry you have suffered wiht this beast too, but you know how misery loves company...
I would love to share our stories via email when you have the time.
I feel like I am losing my mind-- truly. Depression, anxiety- afraid t leave the house.
Most days do not even get dressed--
None of my friends seem to understand this-- they don't know why I am sick for so long ( since December), and honestly I don't have the strength to explain it all to people anymore so I am just retreating.

My email address is:
kmcbaskets@comcast.net

Thank you & I hope you are over this thing...I can't imagine ever being free again.

kate

--------------------
Kate
New Jersey

IBS, diverticulosis, recurrent c diff since Dec 2010
Have no clue what symptoms are from what anymore- trying to find my way back to a life...

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Re: Has anyone ever been diagnosed with c diff ? new
      #364979 - 06/02/11 09:04 PM
KareBear

Reged: 05/30/11
Posts: 26
Loc: Arizona

Hi Kate,
I can relate to your story so much. In my case I have had severe IBS since I was 18 years old, I am now 37. About five years ago I went through a horrific period of being sick. I went to the hosipital, urgent care, GI specialists, internists, and primary care doctors. It took months before they finally diagnosed me with c dif. I went on extreme routines of every antibiotic known to man it seems like. I had little relief. I did research on the internet and took all suggestions, some would help for a while and others not at all. I think what it comes down to is that every body's body deals with these things in its own way. For me, and I swear I don't want to bring you down, but I had to battle the c dif for 3 years. To say that it completely took over my life is an understatement. When it seemed to be getting cleared up towards the end of the 3 years I had a little "mental meltdown" if you will. I stopped taking every medication prescribe by these doctors except for my Zoloft. I figured I still needed that. I went to using only probiotics, peppermint, ginger and fennel capsules. I was able to get to a point of not being as badly sick as I was. However, my IBS seems worse now then it ever has been in my life. Not that I have a life. Anyway, after hitting really below bottom I went on my search to find more help hopefully more natural then just my doc wanting to give me more drugs. I found this website. I have only been on it for about a week. On my own I stopped taking my Zoloft. I didn't think it was helping and I want to find a more natural way to deal with these issues. Forgot to mention I have SEVERE D with my attacks. Now all I take is Algin probiotics (one in the morning), my birth control and peppermint/ginger/fennel capsules at bed time. I limit myself to only eating once a day, which is at dinner around 5 to 6 pm because I work outside the home and have no more time or tolerance from my employer. I have lived off of the cheat sheet I received from Heather. Basically all I have eaten in that week is oatmeal and fish sticks. For two days I have been good. Doesn't sound like much but is a huge break through for me right now. I am trying to find the money to get the hypnotherpy cds from the site because I have liked everything I read about it and am willing to give it a chance. I hope this will end my need for anxiety medicine all together. I can't wait to get the Eating for IBS book so I can learn what more I can add into my diet and hopefully get back to eating at least three meals or whatever is recommended. I have little energy but figure that is from the lack of food. For me I am tired of being and feeling alone. My family is supportive, but I can't even get through a family get together without an attack and so they don't totally get it. I just want to stay in my house or should I say bathroom and disappear. Although there is that minute little voice that doesn't want this to be my exsistence any more. So, I will find a way to try the hypnotherapy, figure out yoga?, make the book my bible and keep my fingers crossed that I can find a new way to deal with this disease. So, after my long story here is my advice to you...life is worth living I know after losing too many relatives lately, so we cannot give up and we must believe that we all can find balance within ourselves to find a way to start our new lives. You will get a grip on the c dif and hopefully your IBS. I am here if you ever want to talk.
Kare

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KareBear new
      #365017 - 06/05/11 01:48 PM
Marilyn

Reged: 05/02/03
Posts: 1372


Just popped in to mention that if you do finally decide on the hypnotherapy - the IBS Audio Program - there are some things you can do while on it that will be helpful to your success - it is a journey and a process... but there is good hope too - If you do get the program, Post on the hypnosis forum to let me know and you can get support if needed.
All the best to you.

--------------------
My Journey and Success with the IBS Audio Program Hypnotherapy Program: www.helpforibs.com/messageboards/ubbthreads/showflat.php?Cat=&Board=hypnotherapy&Number=224850

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