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C Diff Questions

  • Thread starter NanaOf8GirlsAndCounting
  • Start date
N

NanaOf8GirlsAndCounting

Guest
About a month ago Graycie tested positive for C diff again. They put her on Vanco and she was off of it for around a week. My daughter noticed that Graycie wasn't eating again and was clingy and crabby. The next day she started having diarria again and it was that stinky c diff smell. So once again to the peds and they called and she is testing positive for c diff again. They called the GI dr and now the Infectious Disease drs are involved. My question is this : has anyone had reaccurances of c diff? They don't know if it is a reacurrance or if it never left her in the first place. They are talking about putting her on another med but from what I read there are only 2 that are used to fight c diff. Flaygl and Vanco. Have you been treated with any other med for c diff? They are suppose to call us today with a plan so we don't know if they are admitting her again or what. Any help would be greatly appreciated. I am posting this in the adult section because there doesn't seem to be many children or toddlers with this issue. She was hospitalized a few months ago with this and had 3 surgeries and stayed for 2 months. It was touch and go with her and we don't want it to ever get that bad again. Thanks for any help.
 
N

NanaOf8GirlsAndCounting

Guest
About a month ago Graycie tested positive for C diff again. They put her on Vanco and she was off of it for around a week. My daughter noticed that Graycie wasn't eating again and was clingy and crabby. The next day she started having diarria again and it was that stinky c diff smell. So once again to the peds and they called and she is testing positive for c diff again. They called the GI dr and now the Infectious Disease drs are involved. My question is this : has anyone had reaccurances of c diff? They don't know if it is a reacurrance or if it never left her in the first place. They are talking about putting her on another med but from what I read there are only 2 that are used to fight c diff. Flaygl and Vanco. Have you been treated with any other med for c diff? They are suppose to call us today with a plan so we don't know if they are admitting her again or what. Any help would be greatly appreciated. I am posting this in the adult section because there doesn't seem to be many children or toddlers with this issue. She was hospitalized a few months ago with this and had 3 surgeries and stayed for 2 months. It was touch and go with her and we don't want it to ever get that bad again. Thanks for any help.
 
N

NanaOf8GirlsAndCounting

Guest
About a month ago Graycie tested positive for C diff again. They put her on Vanco and she was off of it for around a week. My daughter noticed that Graycie wasn't eating again and was clingy and crabby. The next day she started having diarria again and it was that stinky c diff smell. So once again to the peds and they called and she is testing positive for c diff again. They called the GI dr and now the Infectious Disease drs are involved. My question is this : has anyone had reaccurances of c diff? They don't know if it is a reacurrance or if it never left her in the first place. They are talking about putting her on another med but from what I read there are only 2 that are used to fight c diff. Flaygl and Vanco. Have you been treated with any other med for c diff? They are suppose to call us today with a plan so we don't know if they are admitting her again or what. Any help would be greatly appreciated. I am posting this in the adult section because there doesn't seem to be many children or toddlers with this issue. She was hospitalized a few months ago with this and had 3 surgeries and stayed for 2 months. It was touch and go with her and we don't want it to ever get that bad again. Thanks for any help.
 
T

Transplantmommy

New member
Cheryl,
I am much older than Gracie, but I will answer your question and I hope it helps. Yes, I have had c-diff, but I only had it once. It was about 4 months after my double lung and liver tx and I started having horrible stomach pains and some diarrhea. I went to my local GP and he tested me for c-diff and it was positive. He put me on Flagyl for 10 days and I felt great while I was on it, but once it was gone, all the pains came back again. I went to my local hospital and they did a CT scan and saw that my colon was inflamed and were sure that I still had c-diff. They didn't know what to do with me because of my transplants, so I was sent to Cleveland Clinic where I had my tx.

When I got to Cleveland, they put me on IV meds (don't remember what) and I started to feel better again. Before they released me, they had a colorectal doctor come in to talk to me. He told me that I needed emergency surgery because the infection was that bad. When I came out of surgery and woke up, part of my intestine was on the outside of my stomach (had a stoma) and I was told that they had to remove all but about 6-8 inches of my large intestine because the infection was horrible and I was probably a few days away from death. I was shocked!!!

I was then put on probiotics to keep what I had left, healthy. Have they tried probiotics with Grayson? Might be worth a shot if they haven't.

I had a colostomy bag for 9 months (basically had a bag covering the stoma and pooped in a bag instead of the normal way). I had my colon removed June 14, 2007, had surgery to connect my small intestine to what was left of my large intestine on December 5, and then had another surgery to close the stoma on March 5, 2008. I take a probiotic 3 times a day, and have not had a problem since.

Good luck with Grayson, I hope they find something to help!
 
T

Transplantmommy

New member
Cheryl,
I am much older than Gracie, but I will answer your question and I hope it helps. Yes, I have had c-diff, but I only had it once. It was about 4 months after my double lung and liver tx and I started having horrible stomach pains and some diarrhea. I went to my local GP and he tested me for c-diff and it was positive. He put me on Flagyl for 10 days and I felt great while I was on it, but once it was gone, all the pains came back again. I went to my local hospital and they did a CT scan and saw that my colon was inflamed and were sure that I still had c-diff. They didn't know what to do with me because of my transplants, so I was sent to Cleveland Clinic where I had my tx.

When I got to Cleveland, they put me on IV meds (don't remember what) and I started to feel better again. Before they released me, they had a colorectal doctor come in to talk to me. He told me that I needed emergency surgery because the infection was that bad. When I came out of surgery and woke up, part of my intestine was on the outside of my stomach (had a stoma) and I was told that they had to remove all but about 6-8 inches of my large intestine because the infection was horrible and I was probably a few days away from death. I was shocked!!!

I was then put on probiotics to keep what I had left, healthy. Have they tried probiotics with Grayson? Might be worth a shot if they haven't.

I had a colostomy bag for 9 months (basically had a bag covering the stoma and pooped in a bag instead of the normal way). I had my colon removed June 14, 2007, had surgery to connect my small intestine to what was left of my large intestine on December 5, and then had another surgery to close the stoma on March 5, 2008. I take a probiotic 3 times a day, and have not had a problem since.

Good luck with Grayson, I hope they find something to help!
 
T

Transplantmommy

New member
Cheryl,
<br />I am much older than Gracie, but I will answer your question and I hope it helps. Yes, I have had c-diff, but I only had it once. It was about 4 months after my double lung and liver tx and I started having horrible stomach pains and some diarrhea. I went to my local GP and he tested me for c-diff and it was positive. He put me on Flagyl for 10 days and I felt great while I was on it, but once it was gone, all the pains came back again. I went to my local hospital and they did a CT scan and saw that my colon was inflamed and were sure that I still had c-diff. They didn't know what to do with me because of my transplants, so I was sent to Cleveland Clinic where I had my tx.
<br />
<br />When I got to Cleveland, they put me on IV meds (don't remember what) and I started to feel better again. Before they released me, they had a colorectal doctor come in to talk to me. He told me that I needed emergency surgery because the infection was that bad. When I came out of surgery and woke up, part of my intestine was on the outside of my stomach (had a stoma) and I was told that they had to remove all but about 6-8 inches of my large intestine because the infection was horrible and I was probably a few days away from death. I was shocked!!!
<br />
<br />I was then put on probiotics to keep what I had left, healthy. Have they tried probiotics with Grayson? Might be worth a shot if they haven't.
<br />
<br />I had a colostomy bag for 9 months (basically had a bag covering the stoma and pooped in a bag instead of the normal way). I had my colon removed June 14, 2007, had surgery to connect my small intestine to what was left of my large intestine on December 5, and then had another surgery to close the stoma on March 5, 2008. I take a probiotic 3 times a day, and have not had a problem since.
<br />
<br />Good luck with Grayson, I hope they find something to help!
 
N

NanaOf8GirlsAndCounting

Guest
Thanks for replying Patti, they just started her on a proaboitc along with vanco again. She has a short bowel due to meconium ill at birth so a few months ago she got really sick with her stomach swelling and puking and they admitted her. She tested postive for c diff at that time and it was severe and turned into psedomembrous colitis. She had emergency surgery to open her gut to allow for the swelling of her colon. She didn't have much gut left anyway and they thought they would have to remove her colon. After 3 more surgeries she was able to keep her colon. She spent 2 months in the hospital recovering. It was very scarey and she almost didn't make it. Since that time she has tested positive 2 additional times for c diff. She is back on vanco and a proabotic. It just scares the crap out of us to think she could head down that road again. It is hard to find many toddlers who have experienced this and I am thankful for your help. Flagl didn't help her at all and vanco seems to keep it from getting out of control but I am wondering is flagl and vanco the only 2 antiboitics that fight c diff?
 
N

NanaOf8GirlsAndCounting

Guest
Thanks for replying Patti, they just started her on a proaboitc along with vanco again. She has a short bowel due to meconium ill at birth so a few months ago she got really sick with her stomach swelling and puking and they admitted her. She tested postive for c diff at that time and it was severe and turned into psedomembrous colitis. She had emergency surgery to open her gut to allow for the swelling of her colon. She didn't have much gut left anyway and they thought they would have to remove her colon. After 3 more surgeries she was able to keep her colon. She spent 2 months in the hospital recovering. It was very scarey and she almost didn't make it. Since that time she has tested positive 2 additional times for c diff. She is back on vanco and a proabotic. It just scares the crap out of us to think she could head down that road again. It is hard to find many toddlers who have experienced this and I am thankful for your help. Flagl didn't help her at all and vanco seems to keep it from getting out of control but I am wondering is flagl and vanco the only 2 antiboitics that fight c diff?
 
N

NanaOf8GirlsAndCounting

Guest
Thanks for replying Patti, they just started her on a proaboitc along with vanco again. She has a short bowel due to meconium ill at birth so a few months ago she got really sick with her stomach swelling and puking and they admitted her. She tested postive for c diff at that time and it was severe and turned into psedomembrous colitis. She had emergency surgery to open her gut to allow for the swelling of her colon. She didn't have much gut left anyway and they thought they would have to remove her colon. After 3 more surgeries she was able to keep her colon. She spent 2 months in the hospital recovering. It was very scarey and she almost didn't make it. Since that time she has tested positive 2 additional times for c diff. She is back on vanco and a proabotic. It just scares the crap out of us to think she could head down that road again. It is hard to find many toddlers who have experienced this and I am thankful for your help. Flagl didn't help her at all and vanco seems to keep it from getting out of control but I am wondering is flagl and vanco the only 2 antiboitics that fight c diff?
 
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