April 1, 2017 at 5:42 pm #93004karendParticipant
What a kind thing for you to say, thank you!
-KarenMarch 29, 2017 at 10:27 pm #92996positivityParticipant
The first issue to rule out would be pancreatitis as this is a risk factor with ERCP when placing stents, even though she doesn’t have stents it’s probably similar. My mom got pancreatitis and her lipase level shot up high and got abdominal pain even with IV of pain medication. Luckily, it subsided in about a week, but the patient must be monitored daily with bloodwork. Why did they choose drain over stents? Is it due to tumor location?
Hopefully she feels better soon.March 29, 2017 at 8:21 pm #93003
We are in this together, dear megan, hang in there.
MarionMarch 29, 2017 at 5:57 pm #93002
Thank you to everyone for your help and advice. I can’t thank you enough. This is such a difficult time, and there are not many places to turn for help. I can’t tell you how much I appreciate you all and this group in general.March 28, 2017 at 11:35 pm #93001
There you go, Megan. Karen laid it out in clear terms. Stand your ground, there are too many unanswered questions. Lainy also made a good point in that tugging can increase pain around the wound.
MarionMarch 28, 2017 at 10:08 pm #92997lainyMember
Dear Megan, My husband had internal and external drains and could the problem be the drain is pulling on her skin? I know it sounds like a small thing but we used to pin the drain to the bottom of Teddy’s undershirts so they did not hang so low and pull on him. You may also ask for Home Nurse to come take a look at the set up to make sure there is nothing causing the pain. Wishing you the very best.March 28, 2017 at 9:46 pm #92999March 28, 2017 at 9:02 pm #92998
Thank you so much for your reply.
She had CT scans done on the first day of her hospital stay – so a week prior to the drains being placed. At that time, it did not appear that there were changes; however, she has not had a recent PET scan. I will ask her oncologist about that.
Thank you for the information on the drains – there are so many new terms and concepts to wrap my head around lately. I am trying to keep up with everything!
I would love any input from Karen – thank you so very much for your help!
MeganMarch 28, 2017 at 8:46 pm #93000
megan….I am sorry to hear that your Mom is encountering the enormous pain not responding to oxycodone and morphine. I will forward this to our oncology nurse, Karen, with the hope she can respond quickly.
Please know unlike internal biliary stents external drains do not need to be exchanged.
As it is confirmed that the drain procedure is not the cause of her pain, has your Mom been scanned to see whether the root of the problem is related to the tumor?
MarionMarch 28, 2017 at 8:38 pm #12689
My mother was diagnosed with Stage 4 intrahepatic CC in October, 2016. She has had 6 rounds of chemo since then (gem/cis). She was being treated at Stanford in the bay area in CA; however, she was planning on moving down to San Diego to be closer to me and my sisters. She and my dad came down to meet with the oncologist at UCSD for the first time and to see their new house and she became very nauseous and had a lot of pain. She has now been in the hospital at UCSD for 12 days and has had a very difficult time. Her bili increased quite a bit and they ended up doing an internal/external biliary drain. They have not yet done a capping trial, so she does have two drainage bags currently. Since the procedure, she has been in a tremendous amount of pain. IR has followed up and done an ultrasound to ensure that no complications occurred during the procedure and everything appears to be fine internally. Her liver functions are looking better as well. However, her pain is very intense. She is on oxycodone and morphine to try to manage the pain, but it is not very helpful.
Has anyone had any experience with this before? Is it common to have this much pain following that procedure?
Also, from reading some of the posts on here, it sounds drains become clogged and leaky quite frequently and need to be replaced. Does that mean that she needs to have this procedure again, or is it more minimal when they just replace them?
Any suggestions or input is greatly appreciated!
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