October 31, 2015 at 12:54 am #90275
I have them capped, except for 48 hrs after they are changed out, to ensure they are working ok. Sorry if I was unclear in my post – the leakage I’ve had has always been due to mechanical failure somewhere on the fittings attached to the drain, or a cross-threaded cap or something. My biliruben was good – I just had labs on Wednesday. I’ve not had jaundice since before I started getting treatment, thank goodness!
But, I should have mentioned (can’t remember if I did in my introduction) that I have Type II diabetes, and have had it for many years. My blood sugar has not been in very good control since I’ve gotten sick. And – in the past, I have had issues with gastroperesis, although there was some difference of opinion between doctors on that – in fact, those discussions were with my MDs, not the gastroenterologists. But that’s what took me to see the gastrointerologists in Albany, was the stomach pain and feeling things just weren’t moving through my system well.October 30, 2015 at 7:10 pm #90274karendParticipant
I’m sorry to hear of the problems that you have been having with your biliary drain, pain, and constipation. This must be so very frustrating for you!
My name is Karen, and I am an oncology nurse who is involved with the foundation doing various activities. Marion contacted me about your specific posting to see if I could add any information for you.
As far as your drain goes, I have cared for people with external drains that are capped and or attached to a drainage bag. I have always flushed drains at least once a day with 5-10 ml of saline to assess patency and reduce the chances for occlusion.
It is not uncommon for the biliary drains to leak at the insertion site, and I’ve had to do many dressing changes on people with this issue. Have you or do you ever attach your drain to a bag for drainage? Have you tried this to see if leakage at the site of insertion subsides?
Are you bilirubin levels checked often, and are you free from jaundice?
You mentioned as well, that you suffer from abdominal pain, bloating, and so forth that it managed with narcotics. Has your oncologist or gastroenterologist ever suggested enzyme replacement? Here is a link to an old thread on digestive enzymes: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=9106
I will do some more searching around for you for reputable, peer-reviewed articles that may be of help for your stent leakage, or pain issues as well as searching for drain care from the major cancer centers. My personal experience though, as I mentioned, is that leakage is bothersome but not uncommon.
-KarenOctober 30, 2015 at 5:52 am #90273marionsModerator
dmr….I am wondering: is your drains attached to external bags or is it capped? Personally I don’t have much experience with drains, but I have read numerous postings on bile leakage.
You may also want to take a look at the below link:
I am hoping and wishing for others to chime in on this important subject.
MarionOctober 30, 2015 at 2:29 am #90272
OK that is all good but it could be as simple as indigestion or ulcers, so much can happen in a short time. Why not ask the ONC to recommend a GI to you? My GI has saved my life 2 X now. I got so lucky with him. At this point it can’t hurt anything but of course you should discuss it all with the ONC. Let him know you are not having a quality life and need some answers. OK. OK so I would feel better if you asked! I worry about everyone! That’s my HOBBY!October 30, 2015 at 1:48 am #90271
I could discuss seeing a gastrointerologist out here. I saw two in Albany, and didn’t have a good rapport with either one. I did have an endoscopy and proctoscopy a couple years before the CC diagnosis, but neither found anything.October 29, 2015 at 10:49 pm #90270
Just thinking, do you think you could benefit from an appointment with a Gastrointestinal Doctor? I have been seeing one for 5 years now, had a Colectomy in April but he always seems to have a handle on what is wrong and what can be done for the stomach. Not sure but I don’t think anyone should be on Oxycodone that long. Perhaps others can check in on this.October 29, 2015 at 10:31 pm #90269
We always discuss the pain on my visits. I’ve been on Oxy for almost a year now! As for constipation, they have me taking Miralax, but it’s hard to be consistent chocking that stuff down every day, maybe twice a day. I still seem to have fluctuations in regularity.October 29, 2015 at 8:42 pm #90268
Does your ONC know all this? If not you should tell him what is going on as you really need your energy to fight CC whereas another tummy problem could be helped. Or are you trying to get 2 for the price of one? A little medical humor there!!! Sorry!October 29, 2015 at 7:53 pm #90267
Thanks for the info. I may have other reasons for my abdominal pain, because I’ve been fighting it since the beginning. Essentially, I’ve had a stomach ache for the entire time since I’ve been diagnosed. Now, I did have problems going back much farther than that, so it could just be aggravation of existing problems. I have terrible bloating and gas pain. I haven’t found anything that really works for me. Taking Oxycodone just makes it a vicious circle. The meds cause constipation, which causes pain, and around and around we go!October 29, 2015 at 2:48 am #90266
LETS TALK DRAINS: Out of the 5 years my husband fought CC he had 4 years with drains. He never had your drain problems although he did have the infections. Lets take it step by step. Not all Doctors are right on when it comes to installing drains. The first couple Teddy had were bothersome but by the 3rd we got the best! In act we always requested him and never had a problem. Teddy even played golf with no problem. Didn’t seem to improve his game either. LOL
The lovely infections are a given and would happen 2 X a year. I knew when he got the chills and his temp was 102o to get him to ER. They in turn knew to get him right on an IV of Levequin. Done and in 2 -3 days he was normal again. Talk to your ONC and perhaps ask him who he would suggest as the next installer of the drain. They would give Teddy a twilight sleep and bingo bango it became just another event but one he didn’t mind at all. Also Teddy used to pin the tubing on to his shirt from the inside and that not only kept it safe but the stitch didn’t pull. I hope you hit on the right person as it will make a world of difference and when you feel the infection coming on get treatment immediately. No need to suffer needlessly as you are going through enough as it is. Good luck. P.S. He never had abdominal pain with replacement.October 29, 2015 at 2:00 am #11828
I’ve had two, since February, 2015. They had a really hard time getting the left one working and it took three attempts to get a stent in there so that it would actually drain.
Since then I’ve had two bad infections, that are common enough with these things.
I had them both replaced this Monday, because early Sunday morning, I pulled the right one so hard sleeping that it broke the suture and pulled on the tube. That hurt, I can tell you!
Here it is, Wednesday, and the right one is leaking at the connection to the tube. So, back in first thing tomorrow to have them swapped out again. This must be my tenth time having them swapped. I’m rather unhappy about this trip, as every time they are replaced I get a lot of abdominal pain, fever and nausea for two or three days.
A coupe things I’ve noticed about these things from seeing many different doctors at different clinics is that there is no consensus on maintaining them – even among doctors at the same facility.
At my first hospital, Albany Medical Center in NY, they wanted me to flush them daily. At first twice, then just once, depending on who I asked. They never talked of replacing them. They also used a complicated valve body to eliminate uncapping/recapping, but it was fragile and I broke two of them.
At my current hospital, University of Colorado in Denver, they never have me flush them, but want to replace them every six to eight weeks. I have had a couple nurses and doctors who seemed surprised they don’t have me hook up bags at regular intervals to check drainage, but anytime that’s been a worry, they’ve done a saline flush under the x-ray to ensure they were working well. At least the cap and the component it screws onto is light and lies flat under my shirt. Those valves they used in Albany really poked and irritated me. Also, they increased the size of the tube a couple sizes up from what they used at Albany Med.
I’ve been lucky in that I’ve never had them clog up.
How does this compare to other’s experiences, who’ve had these nasty things in for a long time?
And yeah, I’d rather have these nasty things than jaundice. That was the worst, bone deep itching I’ve ever experienced in my life. Truly a horrible experience.
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