December 16, 2014 at 3:17 am #85778kvollandParticipant
No side effects that we have noticed. He’s been on it for a year and a half. Side effects listed are things like GI upset, diarrhea, constipation and changes in taste. Think that Mark is on a low dose because I have see some of my patients on a lot higher doses. But I don’t think I have every seen anyone with side effects.
Hope it helps.
KrisVDecember 13, 2014 at 9:39 pm #85788
I believe I just got a script for the Ursodial. Any side effects for that? I got it filled but haven’t taken it yet, will probably start tomorrow. Capping trial going on now, biliary drain is pulled out of the bile duct, no bag for drainage, just the pic line for IV antibiotics. Another procedure next week to go from 12 French to 10 French tube size, then hopefully get it pulled the following week… Getting there!December 12, 2014 at 11:18 pm #85787kvollandParticipant
We have had a little trouble with narrowing of the bile ducts but so far managed to dodge any procedures, stent placements or anything. The only symptom my husband would have was an elevated temperature so off to the hospital we would do. Sepsis was the diagnosis. On MRI they thought there was narrowing (the GI doc) but our surgeon said no. He was hospitalized three times for this and then it stopped.
Mark lost all of his left lob of his liver and a good portion of his right. According to the GI doc we saw he has multiple connection spots from his bile ducts in his liver to the stump of the intestine and that only one appears narrowed. We took a watch and wait approach because we knew any messing around with the bile ducts…dilation, stents, etc would increase the risk of infection. Why replace one problem with another was our question?
Consequently they put Mark on Ursodial 100 mg twice a day and since then no problems. And now Mark is afraid to quit taking it even though he has been told he can. I don’t blame him and it doesn’t seem to be causing any negative effects so no one is pushing.
KrisVDecember 8, 2014 at 1:04 am #85786
Pat, it appears that you were almost exactly 180 degrees the opposite of me! I was at the time also working for a great company and was back at it Mid-December while I did a little throughout the time I was recovering in NY from Sept. to Nov. I did need the two seams from what I understand, and there are still staples in me as well. My liver is also an amorphous shape and I have fun with the CT techs every time I go. “Everything in the right place?” I ask… “Well, you seem to have a very large spleen”. Me: “That’s not a spleen, it’s my liver” big circle eyes from CT tech and I get a laugh out of it. I agree with the blessing you mention, I’m right there with you only a little less time. Puts life in a different perspective, doesn’t it?December 5, 2014 at 10:53 pm #85785herculesModerator
Derin, My left lobe and 25% of my right lobe was removed. My surgeon said he would take a piece of intestine if he needed it fortunately he didn’t, that simplified recovery ( I was eating 48 hours after surgery, went home day 5) . He said he was able to move things around a little and stretch the duct without making a piece, nice…one seam only, not two. all my plumbing is on my right, my liver regenerated very round like an over inflated football. Other than having cc, I am a lucky guy over and over. I went back to work in 10 weeks, and finished my career 4 years later. Most of all my biggest blessing is no recurrence over time. In prayer or deed I thank god every day. I hope all goes well and you can get rid of that drain, God bless, PatDecember 5, 2014 at 7:55 pm #85784
Thanks for the post. Main question I have, what portion of the liver was resected and where’s your new ‘connection point’. My entire right lobe and half of the left was resected. The liver grew back under the heart and intestines moved up to fill the space where my original liver was. That being said, the small intestine used for the new bile duct runs right up the middle of my chest and connects to the edge of the resected liver on the left side of my body, does that make sense? Clear as mud? Anyway, I, like you, will have a couple/few drinks once a week, sometimes 2. but not when I have the biliary drain stuck thru the liver!! Regarding true ID of a bile duct, who the heck knows! I did find this study: http://www.ncbi.nlm.nih.gov/pubmed/7338243 which puts it at 3.67 mm +/- .03mm so I’m leaning towards the 3-4mm range. I didn’t have any pain, but the tan floating stool and itching from higher bilirubin levels was the giveaway. I unfortunately have a slight hernia right in the middle of the chest from about the turn of the scar at the bellybutton up to the start of the incision. My wife calls it the alien as it bumps out and I can’t really pull it back even when holding in the stomach. It may have been caused from my weight lifting that I did continue after the surgery and I was sufficiently recovered, but not as much of late. Silver lining to this situation, can’t digest any fat as the bile is draining to the bag still, so I’m down about 15-18 lbs. to a svelte 206… I guess I still have decent looking arms because every nurse I deal with makes a comment and if you use the normal blood pressure cuff at the hospital it pops off (which, if you ask me, is pretty cool!). Still interested to hear anyone else who has gone thru this and thanks again Pat for sharing your experience/history. It was very helpful for sure for me as well as others. I’m almost thru this, and next week Wednesday is the capping trial so if everything is flowing OK, I’ll get the tube out in a few weeks but will then have to really watch what I eat because the fat digestion system will be TURNED BACK ON!!!December 5, 2014 at 2:57 pm #85783lisacraineParticipant
Sorry you have been battling infection but I love reading no recurrence. Praying for better times for you. happy Holidays.
LisaDecember 5, 2014 at 3:53 am #85782herculesModerator
Hello Derin, I have posted regarding this topic, and I will share with you what I have experienced with this bilary restriction issues at point of bile duct resection. About 18 months ago I had symptoms of bile duct restriction, light tan stools, mild pain, so I made an apt. with gastro I. doc who is my go to man right now, He ordered an MRI of the bile duct, as he felt this image is more detailed when imaging the bile duct. The radiologist said the opening of the bile duct was down to 3mm where the normal inside diameter of the bile duct is 7 to 9mm. I am nine years past resection, I noticed your doctor cited 3mm as the normal I.D. ….so which is it? I have read a bile duct is about the size of a drinking straw. Seems to me 3mm is about right. I am not a doctor, I know the duct is more like surgical rubber tubing than a straw, it will stretch and move around. I stretch my midsection a few times a week, one arm up, sideward bend to left to stretch right side, you can feel stuff move a little in there when you do this. I do this because you dont want it kinking up, this little tube has to keep moving around a little. Try to visualize what is in there.Don’t slouch to the right where you would possibly kink or restrict it with your posture. Fortunately I have made it 9 years without a stent or a balloon or anything like that. I know a skilled, experienced hand is priceless for this to be done with long term results. The same is true when a stomach muscle is stitched back together, I have one small lump along the stitching and I am very fortunate with this as well. I drink alcohol once or twice a week, I don’t know for sure if it is relevant or not,most cc patient probably don’t drink, by the same token most have a stent in their bile duct before 9 years. Try the stretching, it may help, good luck, PatDecember 4, 2014 at 6:40 pm #85781lainyParticipant
Oh, Derin, Mazel, Mazel on all accounts! Now just need to get your bump in the road smoothed out!December 4, 2014 at 6:03 pm #85780
Last October was the Bat Mitzvah that we are almost done paying for!! Time certainly flies! My son just turned 16, we got him his first car, Infiniti G35, 2005 with 55k miles, should last him quite a while…December 4, 2014 at 6:00 pm #85779lainyParticipant
Dear Derin so good to see you but not good about all the infections. I hope and wish for this to be the best Chanukah ever and that you get everything done and over with!
If I remember didn’t your daughter have her Bat Mitzvah in October??? Wishing you all the best and please let us know. Oh, I can’t recall anyone who went through this but then I may have forgotten.December 4, 2014 at 5:06 pm #10777
Hi everyone, been quite a while since I posted, and I apologize for that. As you may know, this past Feb. I had the scar tissue narrow at my new bile duct connection and went to Sloan Kettering for the initial bile drain procedure as they knew my anatomy. I did all of the angioplasty procedures here in Sarasota (great Interventional Radiologist, Dr. Scott Perrin, can’t say enough good things about him) and after about 3 months, the drain was pulled and everything worked fine.
Around end of Sept/early Oct. this year, same symptoms started to come back, subsequent blood work (elevated liver enzymes, etc.) and CT scan showed narrowing again. I had Dr. Perrin get in touch with Dr. Brown at Sloan (Interventional radiologist up there) to discuss the angioplasty procedure they do and her comment was that they inflate the balloon and ‘go get a cup of coffee, come back in 10-15 minutes, and then deflate the balloon’. I subsequently found out that in February, Dr. Perrin was only leaving the balloon inflated for about 2-3 minutes. He revised his procedure to follow Dr. Brown’s recommendations, initially used a 10mm balloon (recall the inside diameter of a typical bile duct is roughly 3mm) for 10 minutes, tried to use the 12mm but it kept slipping through into the new bile duct. 2nd procedure did 10 minutes of 10mm, then an additional 10 minutes of 12mm balloon. I had my last procedure last week Wednesday with the 12mm balloon and that should be the last of the ballooning.
Unfortunately, I kept getting fevers. I guess every time you prod around and move tubes thru the liver, crap is turned loose and you fight off the infections. I was in the hospital from last week Wednesday 2pm thru Thursday 3pm, home for Thanksgiving dinner, and then another fever so around midnight back in the hospital and stayed thru Sunday. I got another tube sticking out of me, they put in a PIC line in my right arm so I can give myself the IV antibiotics at home (Zosyn, IV for Flagyl and Cipro I believe) 3 times a day. I go back in this Wednesday to start the capping trial and reduce the current bile drain tube from 14 French to 12 French and pull it back to let everything flow as it normally would to see if everything is working OK. The following Wednesday, same thing, 12 French to 10 French, and the week after if everything is OK, they will pull the drain out by the 24th, a great Hanukkah gift for the last night…
Anyway, now you all know what I do! Curious, has anyone else gone through the same or similar with the connection point of the new constructed bile duct to the existing portion of the bile duct that comes out of the liver?? Wanted to see if others have gone through the same thing…
Silver lining: bile duct scrapings in October, no recurrence anywhere and liver functions as of end of November are all in normal range too…
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