Pain after Stent Placement

I have had that burning pain as well, mostly at night.  It feels like heartburn in my entire stomach area.

Nights are the worst.  Between the itching, the inability to get totally comfortable in any position, the nighttime obsessing about the whole thing.....I have set up tapes to listen to, books to read, prayer tools to pray with in the night....but when it comes down to it I'm feeling too rough to do any of that.  Losing myself ont he computer seems to actually help the most, as long as I'm not reading up on the poor prognosis of this type of cancer anyway. 

Nice to have a place to complain where people REALLY get it.......

Hello Rose, I'm sorry to hear about your pain & life is harder in every way  when you can't sleep to replenish yourself. My Dad has been complaining of the pain in his ab region since before his cc diagnosis... it is in part what sent him to the docs in Nov.  It has not gone away in his case, and some days are worse than others. While he fought taking pain pills for awhile, he now finds they give him significant relief (hydrocodone-apap 10-323 ... 2 every 4 hours as need be).  Heartburn & gas are also key issues for Dad. He has a biliary catheter in place, to divert the bile, instead of the standard stent. His bilirubin levels fluctuate between ~2 & ~18; it's back up this week, with no explanation- as the doctors claim the cath is doing it's job.  We've talked about it many times, and it's still not really clear if the pain might be coming from the cath, the tumor, the gas, or perhaps the newly diagnosed hernia. Docs simply aren't sure.  He has had the cath changed out a couple times, because he needed a larger one & will eventually receive his radiation via this cath (brachytherpy).  Dad takes the Milk of Magnesia for the constipation & Mylanta or Malox for gas/ indigestion - which docs claim to be par for the course.

You know you can always come here to complain, vent, question, or whatever the day calls for!

-Tess

The doctor called today and informed me that because the bilirubin levels have not changed that the stent probably is plugged.  It looks like I will have to get another stent that drains into a bag early this week.  Darn!!!  I was so looking forward to havng the stent placed and experiencing some relief from all this and having a stretch of time at home being normal.

I slept all day under the influence of the oxycodon and will probably have to take another tonight so I don't get my sleep biorhythm all out of whack.  This whole ordeal is so all-consuming, it really takes over doesn't it!

rose may....these clogged stents can cause such discomfort.  Hopefully, you are scheduled for the replacement asap.
Marion

Hi Rose, I can certainly understand your frustration about having the bile inside. Dad has been extremely jaundice for about 6 weeks, with high bili levels & they simply aren't doing anything.  I too was worried about the excess of bile in his system, but per a recent correspondence (last week) with a Prof. of Medicine at UCSF, regarding biliary toxicity, it was indicated that the form of bilirubin that is accumulating in Dad's circulation and is being excreted in the bile will predominantly be the so-called "direct" or "conjugated bilirubin", which is not a toxic form of the pigment.  The professor indicated that we should not worry about toxicity from the yellow pigment itself, as it is highly unlikely that the bile will cause any internal damage. 

Even with a biliary cath that they claim is in perfect position & doing its job, Dad is the most yellow he's ever been & they simply keep saying 'we don't know why'. Mom doesn't want to be the squeaky wheel, & she hasn't really pushed the issue too hard- insisting the docs know what they're doing. 

The waiting period is so long and hard.  Did they give you a prescription for the itching? Its been suggested that SARNA cream is one of best over the counter for the itching. Dad's itching, for whatever reason, has now subsided.

Per Dad's experience, once the consult happens, the chemo started very shortly thereafter.  But it still feels like forever between meetings.

I'm sorry that you're in so much discomfort with the pain & itching.  I know Dad had to have his pain meds changed because they weren't working properly. It may be worth calling the office back & voicing your concerns about these conditions.

You're in our thoughts Rose!

-Tess

Rose, I'm sorry you're having pain.  Charlie has never had a stent, but from reading on the site and your description, that sounds almost unbearable.  I know how I've had to fight for so much with this cancer for Charlie.  I would advise insisting that the doctor see you ASAP to get this stent problem under control.  Sorry to be so blunt, but just sharing from our experience, we've had to do that more than once, not with a stent, but with many other things.  Do you have someone close that could also advocate for you and help you since you are the one actually dealing with the stent pain?  Once you get the stent under control, I'm sure you'll feel so much better.  You may want to look into other doctors.  We switched doctors early on and Charlie says if we hadn't done that, he wouldn't be alive today.  Not sleeping and the pain you're having are totally unacceptable and your doctor needs to address it today.  I could write a book on itching because that's been one of Charlie's major problems.  We started with Benedryl, all the prescription antihistamines none of which worked.  We tried about 20 different creams.  Gold Bond is the only one that worked and it was only temporary.  We then moved on to Remeron which didn't help, but he continues to take it because it helps a little with sleep.  By the way, I went to the doctors with all of this from my own research.  (A lot of doctors don't know much about cc.) I read on this site from Sue in the UK that Rifampin was the only pill that helped her husband.  Our oncologist refused to prescribe it because it might cause some liver damage and we thought well at this point, the liver is pretty damaged already, Charlie just needs some relief.  I'm not talking normal itching.  His was intense to the point it was taking over his life.  His eyes, ears, face, scalp, everything itched and it was really lowering his quality of life.  So I asked the Hospice doctor (Charlie's at home with Hospice coming weekly) and he prescribed it.  It took a few weeks, but with 2 150 mg capsules a day and 30 ml Phenobarbital at night, the itching is pretty much under control.  Just my opinion and in our case, but the antihistamines and cream don't really address this type of itching.  The Phenobarbital affects the central nervous system and somehow short circuits the message of itching from the skin to the brain.  But the Rifampin is the real winner with us.  Rose, you need to be seen before March 10.  Please keep us posted.  Praying for you.

Carol

Rose......... If your not already at the emergency room or have had your stent problem taken care of,  You definitely need to go to the hospital.  I'm sure they can find another Surgeon.  You can't keep letting that bile drain inside your stomach or take to much pain meds.
Jeff G.

Rose....some progress was made and I am happy for that.  Having a phsychologist on hand for patients of some illnesses is quite common.  I was made aware of that when attending the American Psychosocial Oncology Society conference.  Several Hospitals offer the these services.  They are committed people wanting to help ease the burden of diagnoses and treatment for specific ailments.  We all need and deserve all the help we can get.
I am hoping for a better night and that your pain is under control.
Best wishes coming your way,
Marion