US NURSE NEEDS HELP
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anlockwood
- Long Time Contributor
- Posts: 456
- Joined: Sat Sep 06, 2008 9:10 am
Welcome Kris!
I am so sorry for your ordeal with c diff and even more sorry with your experience trying to get on here and the UK site. It sounds like you have been through the mill with c diff but please know you will get better. I am surprised that your doc didn't try vancomycin this last time. Usually after two failed courses with flagyl docs will try switching. I am also very sorry you are having symptoms again. There are still so many treatment options available to you so don't get down. You can research them on here but there is longer courses of treatment, pulsing, tapering, and fecal transfusions. It is a miserable thing to fight and when you are in the grips of symptoms it can seem very dim but things will get better and I think it is fantastic that you are going to visit an id doc. They are to be the experts on this stuff. I would definitely ask about vanco at this point. It seems the flagyl is not working. Also if you feel your symtpoms are back full force don't wait until the 19th to seek help. You may need to call the id doc and let them know what is going on or go back to your reg doc and ask about treatment to get you through until then or if bad enough seek the er. With that being said if symtpoms are mild you may try to give your body the chance to let the good bacteria overcome the bad bacteria but only if symtpoms are seemingly mild. This is not medical advice just what I have learned through my and my sons experiences with c diff. I will put you in my prayers.
Amanda
I am so sorry for your ordeal with c diff and even more sorry with your experience trying to get on here and the UK site. It sounds like you have been through the mill with c diff but please know you will get better. I am surprised that your doc didn't try vancomycin this last time. Usually after two failed courses with flagyl docs will try switching. I am also very sorry you are having symptoms again. There are still so many treatment options available to you so don't get down. You can research them on here but there is longer courses of treatment, pulsing, tapering, and fecal transfusions. It is a miserable thing to fight and when you are in the grips of symptoms it can seem very dim but things will get better and I think it is fantastic that you are going to visit an id doc. They are to be the experts on this stuff. I would definitely ask about vanco at this point. It seems the flagyl is not working. Also if you feel your symtpoms are back full force don't wait until the 19th to seek help. You may need to call the id doc and let them know what is going on or go back to your reg doc and ask about treatment to get you through until then or if bad enough seek the er. With that being said if symtpoms are mild you may try to give your body the chance to let the good bacteria overcome the bad bacteria but only if symtpoms are seemingly mild. This is not medical advice just what I have learned through my and my sons experiences with c diff. I will put you in my prayers.
Amanda
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Nancy1
- Administrator
- Posts: 1902
- Joined: Wed Jan 18, 2006 1:48 am
Kris,
Welcome to the group that no one wants to join. I am assuming that you can read this site but can't post. Be sure to read All Users Read This First (for when you can post here), Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas of FAQ that interest you.
You have gotten lots of good advice. They tell me that everyone beats cdiff eventually, so don't give up! Be sure to read the Ten Commandments of Surviving Cdiff, especially #7, about never giving up hope. I printed it out and posted it in my kitchen, where I read it every day. I had cdiff for 8 months and lost 27 pounds, so I understand what you are going through. What finally worked for me was pulsing. I took 4 probiotics, but the only one I can say for sure worked for me was Primadophilus reuteri, which gave me my appetite back, so I could stop losing weight. Good luck.
Welcome to the group that no one wants to join. I am assuming that you can read this site but can't post. Be sure to read All Users Read This First (for when you can post here), Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas of FAQ that interest you.
You have gotten lots of good advice. They tell me that everyone beats cdiff eventually, so don't give up! Be sure to read the Ten Commandments of Surviving Cdiff, especially #7, about never giving up hope. I printed it out and posted it in my kitchen, where I read it every day. I had cdiff for 8 months and lost 27 pounds, so I understand what you are going through. What finally worked for me was pulsing. I took 4 probiotics, but the only one I can say for sure worked for me was Primadophilus reuteri, which gave me my appetite back, so I could stop losing weight. Good luck.
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klt03301
- Long Time Contributor
- Posts: 642
- Joined: Fri Feb 29, 2008 9:41 pm
Hi Kris,
I'm so glad you got in touch with Roy and thank you Roy for posting her questions here.
I've emailed you several times prior to today, and I'm really sorry to hear you've dot severe "D" again, after so many relapses. Between now and the time you get to see the ID doc, if your symptoms are severe, please go to the ER. It's my belief you should have been on vanco after the first two relapses with flagyl. I would insist upon it! The flagyl has failed too many times now.
Please know that you're not alone. So many here have gone through what you are. I know how depressing it is! I got really down and had to go on medication just to help me psychologically get through it.
You WILL eventually get better, though it's hard to believe. YOU WILL! Something will work for you and I'm so happy to hear you're seeing the ID doc on the 19th! That's not until next Monday, however, so use your best judgment about what you need to do. If your regular doc still insists on flagyl, it's my opinion, just an opinion, that it isn't going to do it for you.
Again, if your symptoms persist or get worse go to the ER. At this point you know how C Diff has affected you and can probably tell if it's C Diff. They may help you get on the vanco if you still have it. The weekend will be coming up soon and I don't know if you'll have access to your regular doc.
All of this is just how I would handle things, not medical advice.
Take care...you are in my prayers...Karen
I'm so glad you got in touch with Roy and thank you Roy for posting her questions here.
I've emailed you several times prior to today, and I'm really sorry to hear you've dot severe "D" again, after so many relapses. Between now and the time you get to see the ID doc, if your symptoms are severe, please go to the ER. It's my belief you should have been on vanco after the first two relapses with flagyl. I would insist upon it! The flagyl has failed too many times now.
Please know that you're not alone. So many here have gone through what you are. I know how depressing it is! I got really down and had to go on medication just to help me psychologically get through it.
You WILL eventually get better, though it's hard to believe. YOU WILL! Something will work for you and I'm so happy to hear you're seeing the ID doc on the 19th! That's not until next Monday, however, so use your best judgment about what you need to do. If your regular doc still insists on flagyl, it's my opinion, just an opinion, that it isn't going to do it for you.
Again, if your symptoms persist or get worse go to the ER. At this point you know how C Diff has affected you and can probably tell if it's C Diff. They may help you get on the vanco if you still have it. The weekend will be coming up soon and I don't know if you'll have access to your regular doc.
All of this is just how I would handle things, not medical advice.
Take care...you are in my prayers...Karen
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gm37
- Long Time Contributor
- Posts: 1258
- Joined: Sun Jun 22, 2008 4:23 pm
Hi,
I would like to offer you my support. I got sick last March and was seen by my family doctor several times, ER several times, but was not diagnosed until a colonoscopy on June 4. By then I had lost 30 pounds and was living my life in the bathroom. I am 58 and a teacher.
The information on this site saved my life. The battle with this bug is a tough one, though. I kept getting sick and spent 4 days in the hospital in September. After a 10 week taper of Vanco and meds to treat the colitis that the c-diff caused, I am finally feeling like a normal person again. I am 40 days off of the Vanco and have my fingers crossed.
I work with a GI doc and and ID doc. Both are wonderful.
Here is the important part. LISTEN WHEN THE PEOPLE ON THIS SITE TELL YOU THAT EVERYONE BEATS IT EVENTUALLY. It has taken me nearly a year, but I am hoping to post in the Success stories soon on this site.
I hope you get help soon. You will be in my thoughts and prayers
Anne
I would like to offer you my support. I got sick last March and was seen by my family doctor several times, ER several times, but was not diagnosed until a colonoscopy on June 4. By then I had lost 30 pounds and was living my life in the bathroom. I am 58 and a teacher.
The information on this site saved my life. The battle with this bug is a tough one, though. I kept getting sick and spent 4 days in the hospital in September. After a 10 week taper of Vanco and meds to treat the colitis that the c-diff caused, I am finally feeling like a normal person again. I am 40 days off of the Vanco and have my fingers crossed.
I work with a GI doc and and ID doc. Both are wonderful.
Here is the important part. LISTEN WHEN THE PEOPLE ON THIS SITE TELL YOU THAT EVERYONE BEATS IT EVENTUALLY. It has taken me nearly a year, but I am hoping to post in the Success stories soon on this site.
I hope you get help soon. You will be in my thoughts and prayers
Anne
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klt03301
- Long Time Contributor
- Posts: 642
- Joined: Fri Feb 29, 2008 9:41 pm
Hi again, Kris.
I saw your posts on the UK site and with the last one, I felt I just needed to offer you some more reassurance. I can't tell you how many days I spent crying; this went on for months (off and on). It is NOT unusual to become depressed about this illness and afraid of a relapse. I know you're feeling awful right now, physically and emotionally. One day this will feel like just a bad dream to you...you WILL get through it. I'm at the point now, 10 months off the vanco, where I don't think about it nearly as much. I have my life back, go to the gym, visit my family regularly, able to keep up with my 4 year old grandson....things I was afraid I'd never be able to do. I was so weakend by this bug. There will be good days and bad days ahead while you fight it and RECOVER. This will take some time. About the crying...go ahead and let it out because I found after a good cry I felt better :-) Rely on your support system, find a good doc you trust (I had GI and ID working together), and keep reading the success stories. They gave me so much hope. Hang in there, Kris.
Hugs to you,
Karen
I saw your posts on the UK site and with the last one, I felt I just needed to offer you some more reassurance. I can't tell you how many days I spent crying; this went on for months (off and on). It is NOT unusual to become depressed about this illness and afraid of a relapse. I know you're feeling awful right now, physically and emotionally. One day this will feel like just a bad dream to you...you WILL get through it. I'm at the point now, 10 months off the vanco, where I don't think about it nearly as much. I have my life back, go to the gym, visit my family regularly, able to keep up with my 4 year old grandson....things I was afraid I'd never be able to do. I was so weakend by this bug. There will be good days and bad days ahead while you fight it and RECOVER. This will take some time. About the crying...go ahead and let it out because I found after a good cry I felt better :-) Rely on your support system, find a good doc you trust (I had GI and ID working together), and keep reading the success stories. They gave me so much hope. Hang in there, Kris.
Hugs to you,
Karen
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Bobbie
- Administrator
- Posts: 12688
- Joined: Sat Aug 06, 2005 8:00 pm
To Kris via Roy
Roy,
First of all, thx. for alerting us to Kris's case. You are indeed a good samaritan. I'm sure Lauren could help her register. Why don't you have her contact administration? Go to www.cdiffsupport.com & click on Contact Us at the top of the page on the right hand side.
Kris,
Welcome to the site. Everyone gave you good advice. Sorry to hear you've gone through so much. You will receive a lot of support on the site.
Tough call re. the Vanco. Could you call ther specialist's office & ask what he/she thinks? It is often more effective than Flagyl (especially with the newer strains) & usually has fewer side effects. Do check your insurance policy -- very expensive.
It's important to remain hydrated. See FAQ-Dehyration. YOu could drink Gatorade -- mixed half & half with water if you have high BP. Do try to eat because you will retain some of the calories. Stick with the BRAT diet until you see the specialist.
Good luck. Let us know how you are doing.
First of all, thx. for alerting us to Kris's case. You are indeed a good samaritan. I'm sure Lauren could help her register. Why don't you have her contact administration? Go to www.cdiffsupport.com & click on Contact Us at the top of the page on the right hand side.
Kris,
Welcome to the site. Everyone gave you good advice. Sorry to hear you've gone through so much. You will receive a lot of support on the site.
Tough call re. the Vanco. Could you call ther specialist's office & ask what he/she thinks? It is often more effective than Flagyl (especially with the newer strains) & usually has fewer side effects. Do check your insurance policy -- very expensive.
It's important to remain hydrated. See FAQ-Dehyration. YOu could drink Gatorade -- mixed half & half with water if you have high BP. Do try to eat because you will retain some of the calories. Stick with the BRAT diet until you see the specialist.
Good luck. Let us know how you are doing.
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anlockwood
- Long Time Contributor
- Posts: 456
- Joined: Sat Sep 06, 2008 9:10 am
So sorry to hear that Kris. I would encourage you that if you feel you are getting dehydrated to go to the ER. Don't wait. I would go with what your doc says on the Flagyl or Vanco but if it was me I would be pushing for vanco at this point. Really you should have been on it long before now. Also it seems to be effective at working a little quicker then Flagyl so you could get some relief hopefully in a few days. But if your doc refuses then at least go with the Flagyl and then you can talk to the id doc about switching over to Vanco on Monday. I am so sorry you are going through this. I know that having full blown symtpoms is definetely the worst time of this struggle but please know that things will get better. Once again I am keeping you in my prayers.
Amanda
Amanda
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klt03301
- Long Time Contributor
- Posts: 642
- Joined: Fri Feb 29, 2008 9:41 pm
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