December 28, 2010 at 7:31 am #15461slittle1127Member
I feel so blessed that we have not had any infections or sepsis, but my husband also does not have a stent. For that we are thankful. I am not sure if he is reaching a place where he might need one. He is not jaundiced much, his bowels are working fine, but his abdomen continues to increase in size. I am sure it is a combination of ascites and tumor growth. We have been advised, so far, not to have the fluid drained unless it becomes difficult for him to breathe. He appears to me to become short of breath easily now. He won’t agree to go to the doctor yet, but we have an appointment on January 10 at Loma Linda with an oncologist. Maybe we’ll see what happens then. My husband is growing weaker and weaker and has increased nausea and vomiting despite taking medications to control that. I think we are on a downhill slide, but I am reluctant to give in. We still do the best we can day-to-day and he insists on going out for a couple hours at a time on his mobie-cart. Any suggestions? SusanDecember 28, 2010 at 4:58 am #15460lisaParticipant
In my personal opinion only – I think it is best to stay on a low dose anti-biotics long term. It reminds me of when the Teddy’s nurses were afraid to give him Tylenol because it might affect his liver. Please!
I think doctors can get a little scared of the “super bug” or drug resistent infection. But what we are trying to do is just stay healthy and get the routine infections under control. I’ve just gone through a bout of that this past week. “Doom and gloom syndrome” – very apt description of what it feels like to be slowly and unknowningly coming down with cholangitis. Its hard for me to spot the symptoms and my kids don’t really notice. We’ve really got to stay on top of things with this disease.December 28, 2010 at 2:49 am #15459mlepp0416Participant
I think that getting the internal (or external) stents (or tubes) changed out on a fairly regular basis will ‘slow down’ the chances for infections. But probably will not ‘stop’ them entirely.
MargaretDecember 28, 2010 at 1:23 am #15458minnie305Participant
I was beginning to think no one else had infections like my husband Karl so thank you for the question. he is always having bouts of cholangitis with sepsis and has been in and out of the hospital. Now we don’t feel like the ‘lone ranger” reading all your posts so thank you.
Question’ does getting the stents replaced usually stop it for awhile after?December 22, 2010 at 1:42 pm #15457betsyParticipant
I too have had several bouts of cholangitis this year. My infectious disease doc put me on cipro 1x/day and I’ve been taking it since July 2010. He wants me to stay on it for a couple more months and said it was completely safe. As far as developing resistant bacteria, he said that can happen and probably already has in my case but I haven’t been sick since July.
BetsyDecember 22, 2010 at 12:23 pm #15456mlepp0416Participant
My husband Tom has an external drain (because his tumor blocks the bile duct, inoperable) and his doc’s had him on Levaquin as a long term antibotic, to lower his chances of getting an infection from the external drain tube. However, that did not work and he continued to get recurrent infection.
After his last bout (and inpatient hospital stay) they called in the ‘infectious disease team’ and he has now been on three different IV antibotics to (hopefully) get rid of the infection. The infectious disease doctor told him that he would probably never have a ‘normal’ white blood count and their goal is to simply keep him out of the hospital. She said that if they can keep his white blood count below 15,000 then they are happy with that, however, that might require periodic IV antibotics.
When Tom did have internal stents in the liver, they had to be ‘changed’ out for new ones about every 6 weeks to prevent infections, and now with this external drain tube we are finding that a tube exchange has to be done about every 4 weeks to prevent (or slow down) infections. It is what it is I guess! Evidently infections are just a way of life for anyone with any kind of tube for long term use….
And, you are right, an infection for a CC patient can be deadly. Since they already have a supressed immune system (because of chemo, etc.) their body cannot fight off germs like a healthy person can and therefore can cause a lot of harm, including death. That is why you have to learn to recognize the signs and get your loved one to the doctor. Things that we watch for are fever over 100, (not always present), more fatigue than normal, general feeling of overall sickness (what I call gloom and doom syndrome)….then I know it’s time to consult w/docs.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretDecember 22, 2010 at 8:39 am #15455slittle1127Member
I guess we should be thankful – if Randy has had any bouts with cholangitis we are not really aware. He does run a fever from time to time but it seems to pass.December 22, 2010 at 8:26 am #15454marionsModerator
Pam….I remember Peter’s postings re: antibiotics and cholangitis. He always carried Cipro and similar to what Bob has been saying, would take it as soon as his temperature spiked. Just wanted to share this with you. These episodes of cholangitis occurr frequently and I am hoping for others to share some of their thoughts on this also.
MarionDecember 22, 2010 at 7:21 am #1545332coupeParticipant
I’ve experienced probably twenty or more cholangitis episodes in the last year – most required hospitalization. We’ve talked about the possibilty of taking a lower dose of antibiotics continuously by cycling between three different meds to avoid the bacteria from becoming resistant. But the docs are not ready to do that yet. They fear that I could get a bug which will not respond to the available meds. So I keep antibiotics (ceftin) with me to take the minute I feel something coming on. Sometimes I can nip it in the bud and avoid the hospital but I contact my onc and let him know what is going on. I keep close track of temp. and bp – if temp starts to spike or my bp starts to drop, we get to the hospital quickly. What was the reason given by the other doc for discontinuing the antibiotic? I pray that you can make the right decision.
bobMarch 25, 2007 at 9:38 pm #15452kate-gMember
Oh WHAT a dilemma Pam! I can’t help I’m afraid! My thoughts are the same as yours! I would worry about the continual use, BUT, I’m also sure I would feel relief at not having to deal with the cholangitus! Aaagh! Big hugs, what more to say?!March 24, 2007 at 12:30 am #409pmfpaMember
Hi, I’m wondering if any of you have had discussions or opinions about the use of continuous antibiotics.
My husband gets frequent cholangitis attacks. We were hoping metal stents would prevent the monthly emergency, but it didn’t. With the last attack, he was sent home form University of Pennsylvania on a week to ten days of antibiotics. He is frequently found to be septic with cholangitis, that is, his blood cultures grow bacteria. I realize this can be life threatening.
Our local oncologist wants him to remain on Levaquin permanently. We had a check up with the endoscopist in Philadelphia, and he strongly advised that he get off of the antibiotics.
While on antibiotics, we’ve gone almost two months without cholangitis. I must admit it’s been a very nice break. My underlying fear is that we’ll pay for this with an antibiotic resistant infection that we will not be able to cure.
It’s so hard to get conflicting information. It seems our local oncologist was not happy with our visit to Philadelphia and the differing opinion. This makes the decision hard for us.
I’m not looking for medical advice, just any experiences thay you may have had.
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