PTC drainage tube

I am new to the group, so let me give you the background first.

My husband have PSC for 10 years. He had his first cholangitis on 2004, and that got him diagnosed with PSC. Ever since he had been asymptomatic, and his blood test has always been stable. This past August, his blood test spiked up quite a lot along with MRI pictures showing visible stricture for the first time in 10 years, and his GI referred him to a bigger hospital. New GI tried ERCP, but failed due to a large blockage. GI ordered PTC. Interventional Radiologist performed PTC, but again failed due to the same blockage. He suffered from bacterial infection right after this PTC procedure. His second PTC (for tube change and another trial for internalizing the tube) was successful on November. Routine tube check and change was done on December. He had another bacterial infection causing him to be hospitalized for 3 days at the end of the year. At that time, GI ordered another tube change because they suspected that the infection was from the infected tube.

Long story short, he has been on PTC external drainage for a month, and internal and external drainage for the past two months. He capped the tube on December, and two weeks later he had bacterial infection. Bacteria that grew out of his blood sample was yeast. He is on antibiotic pills for it now. For the past two PTC tube changes, we see the same trend. Few days after PTC procedure, we see food particles (probably coming from small intestine) in his external drainage tube. This would eventually clear up in few days. I've asked his GI and IR doctors about this (even with pictures), but they said they don't know why and we don't need to be concerned about it as long as it is draining. But I keep wondering.... if we see food mixed in his bile, it means that the liquid is going up stream. What cause this? Does this mean there is some kind of pressure differences? Could his bacterial infection coming from his small intestine??

Do any of you have similar experience to this? Thank you for reading this post!

So sorry to hear of the troubles your husband has been going through. I realize that all of us going through this disease are affected differently, but I believe you should get a second opinion on these procedures that are being done. Is a regular GI doctor doing the ERCP's or one that does this every day in a larger hospital such as a university hospital? This disease and it's treatment I have found is not for the local GI doctor as good and trained as he/she is. You need a specialist. In fact the surgeon/doctor that does my ERCP's does these things just about every day all day 5 days a week. It is a specialty procedure and is not for the faint of heart. Make sure he is seeing a hepatologist that specializes in PSC as well.

Thank you so much for your reply, fcmmark! All of the care he receives is at the university hospital (University of Michigan), and his GI's area of expertise is biliary system, pancreas, and IBD.

She said that she rarely (almost never) fails her procedure, and she alerted us that his obstruction could be tumorous. Apparently, his blockage has gotten significantly worse since MRI picture taken at our local clinic. She suspected that his blockage had advanced rapidly in a month or so.

Since then he had two biopsy done (from ERCP that GI couldn't get all the way through, and from PTC performed by Interventional Radiologist), and no malignant cell identified on both times. We've seen her every three months, and blood test for cancer antigen has been normal (so as C-reactive protein). His liver enzymes are above normal (but sort of borderline normal-ish) after PTC drainage, and everything else is all normal. Ultrasound and other X-ray type pictures showed nothing in his liver. His GI told us that he is too healthy to be considered for liver transplant. I typed in his values on Mayo clinic's website for revised natural history model for PSC, and his risk score was 0.3.

Hello Bluesky

I'm sorry to read of your husband's woes. The issue you describe is not one I am familiar with but from what you say it sounds like you are in good hands. I agree with Mark however that you should consider getting a second opinion, ideally a hepatologist.

I appreciate, that it must be worrying to see your husband's symptoms progress after ten years of being asymptomatic. I hope you find answers to your questions soon. Best wishes..

First of all, I am sorry your husband is going through this series of events. It is indeed a very difficult situation you describe. My husband had a horrible series of negatives from the time of his 1st ERCP procedure…he ended up with severe infection, hospitalization, removal of the stents,placement of external drainage, came home, back in hospital a week later with acute bacterial peritonitis, and due to unforeseen complications, he ended up with 2 external drains. He’s been home 3 months now after having had a 6 week hospitalization in Sept. & Oct. He’s had several tube change outs that have worked out ok. Is he on daily antibiotics? My husband is on Cipro 250 mg twice daily. After 4 months of external drains, they are going to try to remove one & place a stent again, but this time, his ducts are much more open than back in August, so his Hepatologist is more optimistic. It has been a terribly long and arduous experience. He has lost 30 lbs (mostly muscle mass) and can’t do 90% of what he used to be able to do prior to the first ERCP. We are taking it one day at a time. I agree, get another opinion…even if the 2nd one agrees with the 1st, at least you’ll have more answers. And make sure you have good communication with your husband’s doctor(s). Even if you have to bug them every day to get answers. Do not for one minute let the doctors get away with not explaining things. Demand that of them and if you don’t get satisfaction, make a complaint. Believe me, they will listen. I am a medical provider and I had to put my foot down when my husband was in the hospital in order to get answers. Good luck to you and please let me know how your husband makes out!

With PSC, every time you move to stand up, lay down or just move in general changes the internal pressure in the abdomen. Sure, food particles could float back and forth in this environment. I don't think that it is abnormal that you see this. I do know how frustrating it is to have cycles of procedures and infections. I went from asymptomatic to hospitalized every month or so in liver failure. I would get the steroid and antibiotic treatment and bounce back to normal in 2 or 3 days. It was a viscous cycle. Keep your spirits up. Your doctor sounds on top of the problem. I know it is hard, but stick with the program and expect to win. I have a new liver for almost 3 years that is working like a superstar. There is hope and light at the end of the long tunnel. Hang in there.

PTC is quite an invasive procedure. I had two and trust me the first one was bad cause of an ext. drainage bag. Its hard to imagine food particles were found in the stent area. Most probably they would have leaked from somewhere. A good procedure to identify this would be an MRCP with dye constrast. However this is a shot in the air.
My second PTC was a success. However my blockage has returned and I’m only draining from one side of my ducts. Life still goes on and I intend to live a happy life. I wish the same for your husband. If you are not happy get a second opinion.

My husband had his liver transplant in 2005 (about 4 years after PSC Dx). 7 years after his transplant the
PSC returned & he had the PTHC procedure to put an external/internal biliary drain in. He has had the biliary drain for 2 years & thank G-d it has been amazing! The first 5 months it was attached to a bag, but since then it has been capped. He gets a tube exchange every 8 weeks. He feels great, able to work full time, play tennis, etc. My husband was part of the clinical trial for Oral Vancomycin & we believe that may be the reason why the recurrent PSC has remained stable.
Best wishes to everyone dealing with this disease!! Hopefully Vanco will be FDA approved for PSC Tx soon :))

First off, thank you, thank you, and thank YOU for all the reply and support! I can't even express how grateful we are to hear your experiences! We are now considering about getting second opinion, as well as meeting liver specialist.

When capped, he started to get horrible itch in 4-5 days. When we attach a bag, itchiness somehow calms down. He hates external bag, so we made a deal that he can temporarily stop external drainage when he exercises. So far this arrangement works nicely, but make us wonder if he could ever be free from the draining tube.

He teaches Taekwondo for living. Even with all the dramas and external drainage, he is maintaining his fitness level quite well. Many of his students don't even realize he has external draining tube coming out of his body.

Do any of you notice anything about body temp and the disease progress? I am keeping track of his body temps everyday. His body temps are running low for most of the day (except the time when he has infection). My body temps runs about 97.6F- 98F, but his runs about 96F to 97F (sometimes goes down to 95F).