ongoing antibiotic treatment

[Guest guest]

If I remember correctly there are several on the site who are taking continuous antibiotics because of frequent infections. Due to several recent infections my doctor has become alarmed and is now talking transplant. I am thinking this is premature as far as my liver health is concerned. The surgeon who operated on me last Feb and also the doctor who does my ERCP's both say my liver looks pretty good despite the strictures. Would those of you on rotating antibiotics let me know what drugs you are on and what dosage has been prescribed. Maybe this will help as I have another appt. with my doc this Friday. Thank you in advance. Blessings, Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995 married 27 years , 5 sons, 2 daughers in law, 1

granddaugher born 6/06 and 2 golden retrievers

[Guest guest]

Barby,

Both pre and post transplant, I have been on rotating antibiotics.

The reason your doctor is concerned is that with cholangitis, there

is a high risk of sepsis (infection going into the blood). Sepsis

can be fatal if not caught quickly. With the growing resistance of

antibiotics, a bad outcome becomes more likely all the time. So,

while your liver may appear to be in okay shape otherwise, the risks

associated with cholangitis are very real and warrant listing. In my

case, I was listed for cholangitis in 2001, but by 2005 when we did

living donor, my liver had caught up and I did have cirrhosis and

accompanying symptoms. I would also recommend listing when you feel

well and will get a lower MELD score. It gives you time mentally to

deal with being listed, AND the testing is SOOOOO much easier when

your liver hasn't already decompensated. When I multilisted in 2004,

running to all the hospitals and doing all of the tests was *HARD*.

Here's some of the orals I've been on over the years - usually

alternating - one of them for two weeks and another for the next two

weeks. (I started rotating antibiotics in 2001.)

Augmentin

Flagyl

Bactrim

Cipro

Levequin

Avelox (more for my nose, but it covered the bile ducts at the time)

Duracef

Clintamycin

I tried Deoxycycline and threw it up, but that was one they were

trying to use.

The important thing is to catch any break-through infections quickly

since resistance is a real issue. All but levequin are no longer

working for me, but I'm on my second liver and it, too, has bile

duct and cholangitis issues...

Take care,

Deb in VA

[Guest guest]

Barby,

Both pre and post transplant, I have been on rotating antibiotics.

The reason your doctor is concerned is that with cholangitis, there

is a high risk of sepsis (infection going into the blood). Sepsis

can be fatal if not caught quickly. With the growing resistance of

antibiotics, a bad outcome becomes more likely all the time. So,

while your liver may appear to be in okay shape otherwise, the risks

associated with cholangitis are very real and warrant listing. In my

case, I was listed for cholangitis in 2001, but by 2005 when we did

living donor, my liver had caught up and I did have cirrhosis and

accompanying symptoms. I would also recommend listing when you feel

well and will get a lower MELD score. It gives you time mentally to

deal with being listed, AND the testing is SOOOOO much easier when

your liver hasn't already decompensated. When I multilisted in 2004,

running to all the hospitals and doing all of the tests was *HARD*.

Here's some of the orals I've been on over the years - usually

alternating - one of them for two weeks and another for the next two

weeks. (I started rotating antibiotics in 2001.)

Augmentin

Flagyl

Bactrim

Cipro

Levequin

Avelox (more for my nose, but it covered the bile ducts at the time)

Duracef

Clintamycin

I tried Deoxycycline and threw it up, but that was one they were

trying to use.

The important thing is to catch any break-through infections quickly

since resistance is a real issue. All but levequin are no longer

working for me, but I'm on my second liver and it, too, has bile

duct and cholangitis issues...

Take care,

Deb in VA

[Guest guest]

Barby,

Both pre and post transplant, I have been on rotating antibiotics.

The reason your doctor is concerned is that with cholangitis, there

is a high risk of sepsis (infection going into the blood). Sepsis

can be fatal if not caught quickly. With the growing resistance of

antibiotics, a bad outcome becomes more likely all the time. So,

while your liver may appear to be in okay shape otherwise, the risks

associated with cholangitis are very real and warrant listing. In my

case, I was listed for cholangitis in 2001, but by 2005 when we did

living donor, my liver had caught up and I did have cirrhosis and

accompanying symptoms. I would also recommend listing when you feel

well and will get a lower MELD score. It gives you time mentally to

deal with being listed, AND the testing is SOOOOO much easier when

your liver hasn't already decompensated. When I multilisted in 2004,

running to all the hospitals and doing all of the tests was *HARD*.

Here's some of the orals I've been on over the years - usually

alternating - one of them for two weeks and another for the next two

weeks. (I started rotating antibiotics in 2001.)

Augmentin

Flagyl

Bactrim

Cipro

Levequin

Avelox (more for my nose, but it covered the bile ducts at the time)

Duracef

Clintamycin

I tried Deoxycycline and threw it up, but that was one they were

trying to use.

The important thing is to catch any break-through infections quickly

since resistance is a real issue. All but levequin are no longer

working for me, but I'm on my second liver and it, too, has bile

duct and cholangitis issues...

Take care,

Deb in VA

[Guest guest]

Barby, I am also Bactrim DS and Avelox. I started with the ABCs

(augmentin, bactrim DS, and cipro), then moved on to avelox, bactrim

DS and Doxycycline. However, the augmentin irritated my ulcerative

colitis and the doxycycline made me feel terrible.

>

> If I remember correctly there are several on the site who are

taking continuous antibiotics because of frequent infections. Due

to several recent infections my doctor has become alarmed and is now

talking transplant. I am thinking this is premature as far as my

liver health is concerned. The surgeon who operated on me last Feb

and also the doctor who does my ERCP's both say my liver looks

pretty good despite the strictures. Would those of you on rotating

antibiotics let me know what drugs you are on and what dosage has

been prescribed. Maybe this will help as I have another appt. with

my doc this Friday. Thank you in advance.

>

> Blessings,

> Barby - KS

>

>

>

> UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC -

1995

> married 27 years , 5 sons, 2 daughers in law, 1 granddaugher born

6/06 and 2 golden retrievers

>

[Guest guest]

Hi Barby,

You may recall that I got had a problem with liver abcesses after an

ERCP. This required a hepaticojejunostomy. Because I was in dire

straits and the 2 tx doctors who did the surgery didn't have the

luxury of time in determining the bacterial cause of the nosocomial

infection, I was put on gentamicin, vancomycim and ceftazadime. The

vanco was stopped while I was still in the hospital and I continued on

the " gent " and the ceftazadime at home. Eventually, I had an allergic

reaction to the ceft. and had total vestibular loss due to the gent.

so I was de-sensistized to sulfa and was put on high dose sulfa. The

thought was that the infection was so deep-seeded and in a closed

system (my liver) that I would need to remain on sulfa for a long

time. This was in the early summer of 1997. Eventually(the late winter

and spring of 1998), fungal masses grew in my liver due to the high

dose sulfa and I was treated with Diflucan and the sulfa dosage was

reduced to what we considered a safe level. The thought was that I

would need antibiotics periodically and, because I had been allergic

to sulfa (the only other antibiotic useful against the bacteria

introduced into my liver by the ERCP), I would remain on sulfa

indefinitely. I'm still on it. Do I need it? I don't know, but after

so many hospitalizations due to the infection, we figured that we

shouldn't tinker with success. It's the old " if it ain't broke, don't

fix it. " This whole mess of diagnosis and repeated hospitalizations

began ten years ago this week. There was a point in time when I

thought " gee, I haven't been in the hospital in almost a month..... "

Not wanting to tempt the fates, let me just say that it's been awhile

since my last visit to " club med. " And, MRCPs show liver improvement.

Penny

>

> If I remember correctly there are several on the site who are taking

continuous antibiotics because of frequent infections.

[Guest guest]

Hi Barby,

You may recall that I got had a problem with liver abcesses after an

ERCP. This required a hepaticojejunostomy. Because I was in dire

straits and the 2 tx doctors who did the surgery didn't have the

luxury of time in determining the bacterial cause of the nosocomial

infection, I was put on gentamicin, vancomycim and ceftazadime. The

vanco was stopped while I was still in the hospital and I continued on

the " gent " and the ceftazadime at home. Eventually, I had an allergic

reaction to the ceft. and had total vestibular loss due to the gent.

so I was de-sensistized to sulfa and was put on high dose sulfa. The

thought was that the infection was so deep-seeded and in a closed

system (my liver) that I would need to remain on sulfa for a long

time. This was in the early summer of 1997. Eventually(the late winter

and spring of 1998), fungal masses grew in my liver due to the high

dose sulfa and I was treated with Diflucan and the sulfa dosage was

reduced to what we considered a safe level. The thought was that I

would need antibiotics periodically and, because I had been allergic

to sulfa (the only other antibiotic useful against the bacteria

introduced into my liver by the ERCP), I would remain on sulfa

indefinitely. I'm still on it. Do I need it? I don't know, but after

so many hospitalizations due to the infection, we figured that we

shouldn't tinker with success. It's the old " if it ain't broke, don't

fix it. " This whole mess of diagnosis and repeated hospitalizations

began ten years ago this week. There was a point in time when I

thought " gee, I haven't been in the hospital in almost a month..... "

Not wanting to tempt the fates, let me just say that it's been awhile

since my last visit to " club med. " And, MRCPs show liver improvement.

Penny

>

> If I remember correctly there are several on the site who are taking

continuous antibiotics because of frequent infections.

[Guest guest]

Thanks to those of you - Deb, Tim, Penny and the person who didn't give their name - who responded to my question. It is interesting how may of you have had problems with doxycycline. I don't believe I've ever had this one. Currently I'm also on an antifungal. Last Feb. I was in club med for 3 weeks for abdominal surgery for a small bowel obstruction and was on extra high doses of antibiotic. In June I had 2 weeks of diflucan and now I'm on it again. Very hard to get rid of a fungal infection internally. In many ways I still haven't recovered from that hospitalization. But that is another story........ I appreciate all of you for responding - at least now I know I was really remembering that the subject had been discussed before. Blessings, Barby - KS

[Guest guest]

Thanks to those of you - Deb, Tim, Penny and the person who didn't give their name - who responded to my question. It is interesting how may of you have had problems with doxycycline. I don't believe I've ever had this one. Currently I'm also on an antifungal. Last Feb. I was in club med for 3 weeks for abdominal surgery for a small bowel obstruction and was on extra high doses of antibiotic. In June I had 2 weeks of diflucan and now I'm on it again. Very hard to get rid of a fungal infection internally. In many ways I still haven't recovered from that hospitalization. But that is another story........ I appreciate all of you for responding - at least now I know I was really remembering that the subject had been discussed before. Blessings, Barby - KS

[Guest guest]

Thanks to those of you - Deb, Tim, Penny and the person who didn't give their name - who responded to my question. It is interesting how may of you have had problems with doxycycline. I don't believe I've ever had this one. Currently I'm also on an antifungal. Last Feb. I was in club med for 3 weeks for abdominal surgery for a small bowel obstruction and was on extra high doses of antibiotic. In June I had 2 weeks of diflucan and now I'm on it again. Very hard to get rid of a fungal infection internally. In many ways I still haven't recovered from that hospitalization. But that is another story........ I appreciate all of you for responding - at least now I know I was really remembering that the subject had been discussed before. Blessings, Barby - KS