I'm heartbroken
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I'm heartbroken
After two days of mild cramping and loose stool i thought it would be good to submit a stool sample.My results are positive for toxins A/B.I feel like such a loser and i literally can't stop crying.I feel like this is never going to end ,it's been with me since april.I don't know what else to do.
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Re: I'm heartbroken
I am so sorry to hear you are dealing with this. It is such a struggle and so disappointing. I have had two FMT's and even though my last test came back negative, I still struggle with the wait to find out it is back. Hang in there and I hope treatment helps you beat this!
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Re: I'm heartbroken
HI, Georgina,
I'm so very sorry. It will end - it is not forever. Stay hopeful! Was the test a PCR or GDH (considered the most accurate)? Also have you had a long taper or pulse of Dificid? A 30-day taper worked for me and a longer taper pulse worked for one of our mods. The colonoscopy FMTs have the highest success rate (over the ng tube and enemas) and the FMT capsule pills also show great success. So those might be something to ask your doctor about. I noticed in another post that you are a smoker - there was an article recently about smoking killing off good bacteria. Might be good incentive to quit. Hugs to you!
Blessings,
Nikki
I'm so very sorry. It will end - it is not forever. Stay hopeful! Was the test a PCR or GDH (considered the most accurate)? Also have you had a long taper or pulse of Dificid? A 30-day taper worked for me and a longer taper pulse worked for one of our mods. The colonoscopy FMTs have the highest success rate (over the ng tube and enemas) and the FMT capsule pills also show great success. So those might be something to ask your doctor about. I noticed in another post that you are a smoker - there was an article recently about smoking killing off good bacteria. Might be good incentive to quit. Hugs to you!
Blessings,
Nikki
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Re: I'm heartbroken
I am so sorry Georgina
I do remember feeling the same way and it is a terrible. I don't recall how long you were on Dificid. I did relapse on it after 2 weeks and then went on a pulse taper. As Nikki mentioned she went on a 30 taper and is doing well, mine was longer but my GI at the time was not great and I found a study I brought in and he agreed. There is also FMT which so many have done great with! What is your GI recommending?
I know it feels like it will never end but you WILL get well! Some of us take longer than others, I was treated for 10 months but I also felt like it would never end....but it did!
This illness takes a terrible emotional toll on us, we are here for you
NanciT
I do remember feeling the same way and it is a terrible. I don't recall how long you were on Dificid. I did relapse on it after 2 weeks and then went on a pulse taper. As Nikki mentioned she went on a 30 taper and is doing well, mine was longer but my GI at the time was not great and I found a study I brought in and he agreed. There is also FMT which so many have done great with! What is your GI recommending?
I know it feels like it will never end but you WILL get well! Some of us take longer than others, I was treated for 10 months but I also felt like it would never end....but it did!
This illness takes a terrible emotional toll on us, we are here for you
NanciT
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Re: I'm heartbroken
I'm so sorry Georgina. Are you experiencing a full blown infection or did you get tested for your peace of mind? Some people test positive for awhile after beating cdiff. Hope it's your case. If not change to dificid. It was what finally cured me. I'll pray for you. Eventually you will kill this b$$&h.
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Re: I'm heartbroken
So very sorry, Georgina. I know you feel discouraged and frustrated, but as the others said, you WILL beat this. Hugs to you.
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Re: I'm heartbroken
Thank you all for the support and encouragement , you are all so good.Unfortunately we don't have Dificid here but i'm looking into a FMT trough nasogastric tube.I hope this time it will work.I'm going next week to my ID doctor and we will talk about the FMT.Love you all , hugs!
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Re: I'm heartbroken
Georgina your IP address says Amsterdam and you can get Dificid there.
In Europe its called Dificlir or Fidaxomycin.
In Europe its called Dificlir or Fidaxomycin.
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Re: I'm heartbroken
Thank you Roy.For now i'm waiting to see what my infectiose disease doctor has to say and what he recommends.I'm going to see him next tuesday and i will talk to him about Fidaxomycin.I'll keep you updated.Hugs to all!
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Re: I'm heartbroken
Georgina,
So very sorry. I was in your predicament many times. Some of posters have had great luck on Dificid while others found harsh. Worth a shot. Stay away from ng. Infusions.
So very sorry. I was in your predicament many times. Some of posters have had great luck on Dificid while others found harsh. Worth a shot. Stay away from ng. Infusions.
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Re: I'm heartbroken
Georgina, I am so sorry you are going through this. I just wanted to say you are in my thoughts and prayers....as well as everyone else fighting this horrible beast. I hope you are feeling better soon.
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Re: I'm heartbroken
Georgina, I was cured with Dificid after over a year of Vanco and relapse after relapse. Don't give up, you will get well. It takes longer for some of us, who knows why. Hang in there and hope you can get the Dificid. Let us know how you do.
CAROL
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Re: I'm heartbroken
Hi all
Thank you Bobbie and Tonia,prayers are much appreciated.
Bobbie-i know that the naso-gastric infusions are not so great but the doctor i'm seeing doesn't do colonoscopies.He is a infectiouse disease doctor ,not a GI.There is a GI that does transfers trough colonoscopy but he is super busy and i have to wait a least 2-3 months to get the transfer done.If the naso-gastric infusion fails i will make an appointment with that GI.However,for now ,no decision has been made since i am still on that pattern (1 bad day a week and then things are slowing down).The infectiose disease doctor said that he whants to run some tests first and than make a decision.About the Dificid i have to order it ,because here is not sold in pharmacies (apparently Romania has no license to put the drug) on the market and i have to order it for 1700 dollars (very expensive,more then i can afford since my monthly salary is 400 dollars) money from my pocket and i only have the money for a 10 day course even though i have to make a bank loan to cover the expenses , and if 10 days is not enough and i will still relapse then i will remain with debts in the bank and CDiff so i don't know if Dificid is an option for me.If i knew for sure that the Dificid will be my cure i would pay the money.
Tonia-Thank you so much for the kind words.I don't feel really bad though.My worse symptomes are mushy stool 3-4 a day (one day a week ,the other 5 days i'm going once or twice a day with soft stool) and 5 minutes of cramping that are gone after i go to the toilet,sometimes some gurgling all in the morning and gas.I tested because i had one day when stool was loose ,for a peace of mind,i submitted a stool sample and they run the old toxin test and it was positive.I was shocked!!Life's a b...h!My doctor said he doesn't want me to begin no treatment even if my results were positive ,he told me he wants to run more tests and then decide what to do with me.So next tuesday i'm going in the capital to see him.
Tonia by the way ,what were your test results cause i know you tested too,i pray to God that they are negative!
God bless you all! Hugs!!
Thank you Bobbie and Tonia,prayers are much appreciated.
Bobbie-i know that the naso-gastric infusions are not so great but the doctor i'm seeing doesn't do colonoscopies.He is a infectiouse disease doctor ,not a GI.There is a GI that does transfers trough colonoscopy but he is super busy and i have to wait a least 2-3 months to get the transfer done.If the naso-gastric infusion fails i will make an appointment with that GI.However,for now ,no decision has been made since i am still on that pattern (1 bad day a week and then things are slowing down).The infectiose disease doctor said that he whants to run some tests first and than make a decision.About the Dificid i have to order it ,because here is not sold in pharmacies (apparently Romania has no license to put the drug) on the market and i have to order it for 1700 dollars (very expensive,more then i can afford since my monthly salary is 400 dollars) money from my pocket and i only have the money for a 10 day course even though i have to make a bank loan to cover the expenses , and if 10 days is not enough and i will still relapse then i will remain with debts in the bank and CDiff so i don't know if Dificid is an option for me.If i knew for sure that the Dificid will be my cure i would pay the money.
Tonia-Thank you so much for the kind words.I don't feel really bad though.My worse symptomes are mushy stool 3-4 a day (one day a week ,the other 5 days i'm going once or twice a day with soft stool) and 5 minutes of cramping that are gone after i go to the toilet,sometimes some gurgling all in the morning and gas.I tested because i had one day when stool was loose ,for a peace of mind,i submitted a stool sample and they run the old toxin test and it was positive.I was shocked!!Life's a b...h!My doctor said he doesn't want me to begin no treatment even if my results were positive ,he told me he wants to run more tests and then decide what to do with me.So next tuesday i'm going in the capital to see him.
Tonia by the way ,what were your test results cause i know you tested too,i pray to God that they are negative!
God bless you all! Hugs!!
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Re: I'm heartbroken
My results were amazingly negative. I have a very very difficult time trusting that though because I am one of those that seem to get false negative results.
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Re: I'm heartbroken
Tonia what tests did you do?Was it a PCR or GDH?Or both?
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