betsy
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I have what you are describing as internal/external drains. I usually have blood in the bag after a tube change. I wouldn’t be too concerned about it unless its over a couple ccs. Re. the soreness at the drain site – my doctor has me do the following which works quite well – wet a clean washrag with really hot water and hold the washrag over the drain sites until the rag cools – then use a q-tip dipped in hydrogen peroxide and dab it around the drain site…..do this a couple of times a day until the pain is gone. the hot water feels really good. Cant comment on the bilirubin but I always spike a fever the first day. Also been taking numerous different oral and IV antibiotics. My doctor also hangs 2 kinds of IV antibiotics right before my tube changes.
Hope this helps. I’ve been dealing with drains for months and have lots of experience with them….always happy to share information
Betsy
My drains have to hang below my liver so I also use binder clips and clip them to the waistband of my pants. I can hide them inside my pants if the pants are loose enough and have an elastic waistband i.e. yoga pants and/or sweat pants. Having them hang inside my pants is best for me – that way I don’t get the tubes hooked on things – I am forever getting them hooked on the pulls of my kitchen cabinets and it hurts like heck.
Betsy
Kris,
Hope you get this before you leave – I’m thinking of you and hoping all goes well. Please let us all know you are doing.
Hugs,
BetsyHi Mary,
Sorry to hear things have not been going well. It is all so very tiring. I’m thinking of you and Tom and hoping things get better soon. I know what you mean about not emailing your docs anymore. I feel the same way. I’m still tied to plastic stents and 3 drainage bags. After my last tube change, the doctor said the leak they have been working on seems to be gone but now I have a different leak in another location. For now, I’m turning it all back over to my doctors and trying to let go a little bit….Take care.
Hugs,
BetsyWhen I was first diagnosed my liver enzymes were elevated. The CA19-9 tumor maker test for me was normal and yet at the time I had a 5cm tumor sitting in my liver.
Betsy
If you are up to making a trip north to the Cleveland Clinic for a second opinion, I recommend Dr. Matthew Walsh (216-444-6664). He is very experienced in performing the whipple. You’ll find a mixed bag of opinions on this site when it comes to the Clinic, but my experiences have been very, very good and I love my doctors..
Betsy
Hi Bob,
I had so many questions to ask you but they’ve been answered by reading your posts. I am going through everything you’ve gone through and I’ve followed many of the same steps you’ve taken. I hope your appointment this week goes well.
One thing that really resonated with me was how, in the beginning, you followed doctors orders and everything went well. But then along came these bile duct issues and following doctors orders wasn’t always the best plan. I’ve tried so hard to be informed and understand what is going on with me – I’ve gotten second and third opinions – but it is such a complicated issue and there are so many knots to tease apart – and often times, the information is too technical for me to understand. I am so incredibly tired of it all. I just can’t summon the will to get out of this slump I’m in.
My IR doc said there are so few patients out there like me, and, like you, its amazing I’ve survived the septic episodes not to mention remaining cancer-free. It gives me hope hearing your story. Please continue to post so I know how you are doing.
betsy
Hi Bob,
I’m so glad to hear you are doing well. Would you mind sharing the name of your IR doc as well as what hospital he works in. I’ve had bile duct issues and I also have stents attached to external drainage bags…..I’m going on 8 months now.
Thanks.
Betsy
I had post-op complications. A huge abscess formed and the doctors had to open me up again (7 days post-op) to drain it. I wound up staying in the hospital 23 days. Also had a tear in one bile duct as a result of the first surgery to remove my tumor.
Betsy
