lisas

Pat, I don’t know much about the stents or what happens if they get blocked. We’ve talked a bit about stents in my case, but I think my oncologist wants to wait to see if it’s possible that I can get my tubes out completely after my radiation. It’s my understanding that changing the metal stints out is harder – more potential scarring, although they don’t have to be changed as often as the plastic tubes.

Sorry I don’t have more info.

At 130 lbs, mine wasn’t for the typical reason. But, after my cholangiogram/PTC drain procedure in October, I was back in the hospital in less than 72 hours because I was so severely dehydrated and could not keep anything down – food or liquid. It took several days to figure out my tumor was squeezing my duodenum, which was the cause of my not being able to eat or drink and the resulting dehydration. The gastrojujenostomy (which is what, in essence, a gastric bypass is) re-routed things around the blockage so that I could eat.

I lost 20 lbs in short order, which I didn’t really have to lose, because of that blockage from the tumor. If they hadn’t done the re-rout, I don’t think I’d be here 3 months later.

So, even though it’s tough surgery, I hope it brings relief to ilias’s mom.

Lisa

Ha. Some would argue TMI! Seriously, though, that placement right where your bra band lays is a huge issue that I guarantee you people don’t think about.

Good luck with the procedure. You’ll be fine!

Hi, Denise

I have had PTC drains since October. They aren’t bad (especially since my bilirubin level without them was through the roof and I itched like mad) and my bilirubin is now 0.3 and the awful itching is long gone). They told me I’d be really sore for about 72 hours after putting them in and on a lot of pain Meds, but I didn’t find I needed a lot of pain meds. I was sore – mainly getting up and out of bed or a chair, but it was pretty manageable. I don’t know how long I would have taken off work just having them put in because I ended up back in the hospital for 9 days with another issue and having major abdominal surgery. When I get the tubes changed, I’m back at work (although slow), the next day.

The thing I hate the most is giving up long hot baths. You can’t submerge them in water. The waterproof bandages work pretty well in the shower (although I now stand with my back to the water as much as possible and always change to fresh, dry bandages after showering). I’ll hate not being able to swim this summer. I live in Texas, we have a pool and grandkids who love the pool. That part will suck.

I have two drains. One is almost centrally located on my torso and the other is on my right side and lower down. The one on the right makes it impossible to sleep on my right side. Fortunately, I am a left side sleeper. However, I generally try to sleep on my back to avoid rolling over on them and I found using a wedge shaped pillow as a base really helps. My mom found me one at Walmart in Dallas, but I realized they are hard to find in smaller cities (I went all over valdosta Georgia looking for one when we were at my inlaws house).

The drain in the middle of my torso is a trickier placement, primarily because the male dr and the male OR nurse probably didn’t give much thought to the fact that, while it’s placement may be optimal for drainage, it’s right where my bra band is. I’ve had to limit the types of bras I can wear (the cheapie target sports bra is most comfortable because the band can be sort of rolled up to fit just above the drain). That placement is the one thing I wish I’d known about and raised with my dr when I got them initially, but I had just been diagnosed and my brain wasn’t functioning on all 4 cylinders at the time and I had no idea what to expect.

When I went in for my latest tube replacement (about every 6-8 weeks, the tubes have up be changed), I mentioned how uncomfortable this was and the doctor doing that procedure moved it slightly lower (guess the nurses told him what I said to them in pre-op). He wasn’t my original surgeon. It has made a difference comfort wise.

They can and do leak if they get grit in them and since bile is gritty, it’s easy for it to happen. If you start running a fever, it’s important to call your dr ASAP. It can often mean the start of an infection, followed shortly by the drain leaking at the incision site. I’ve gone through 2 different rounds of antibiotics shortly before 2 of my tube changes (both times I sprung a leak). Bile also stains permanently, so I’ve learned to sleep in/wear dark colored t shirts instead of white.

They have to be flushed daily with a saline solution. I am able to get premixed syringes to flush with. Way better than mixing your own solution. They come individually wrapped. Easy to use and travel with. You’ll develop a system for flushing. I have my syringe unwrapped, uncapped and ready to go in one hand when I take the drain cap off. I also have a wad of toilet paper wrapped around the tube, just under the cap. I go through a lot of toilet paper because when you uncap the drain tube, bile/fluid often bubbles out faster than you can twist the syringe on, so be prepared to catch it before it spills on your clothes. Sometimes my husband will help me, but I can usually manage this on my own.

The tubes can be uncomfortable when they get jostled. I initially taped mind to my torso to help with that. I’m at a point now, I let them dangle most of the time. Probably not the sexiest look, but hey, whadda you gonna do (to quote tony soprano).

I personally like the gauze pads that come with a precut drain hole in the middle to bandage the tubes, although you won’t find them at most chain pharmacies.

I’ve been able to keep my tubes capped most of the time. When I first got them, I wore the external bags at night and I also wear them a night or two after getting the tubes changed. Ask about whether you can cap your tubes or not. If you do and you spring a leak, putting the bags back on can help reduce the leakage you have to deal with and make you feel better (last time, I had a lot of pressure and discomfort in my abdominal area before I put the bags on and actually called my oncologist, because I hadn’t felt that before – putting the bags on really helped relieve that). I always travel with a set of new bags, just in case of an emergency. Also, make sure they give you plenty of extra bags if you have to wear them. They are impossible to find at a pharmacy.

Hope this answers your questions. Finally, a question I know something about. If you have more, just shout.

Hi, Beardme.

I’m sorry I can’t say how long it takes to get an appointment with MDA, but I did want to share what my treating doctors here at Baylor in Dallas told me about a 2nd opinion at MDA, which was that they would not accept scans, tests or anything from anywhere else and would make me do it all over there and that my insurance would probably not cover that since it has just paid for me to do all of that in Dallas. So, I guess that would be my first question about getting a second opinion there.

Now, my doctors were not resistant to my getting a second opinion and, in fact, to the contrary, encouraged me to do so and said they would help in any way they could, so I didn’t feel that they were trying to steer me away from getting one.

I sent my stuff to Dr. Chapman at Wash U/Barnes Hospital (based on numerous recommendations through this board) and he had it reviewed and back to me within days.

If you are looking to travel for treatment (I’m not sure what is in Atlanta), you might look at Baylor in Dallas. My medical oncologist here is with Texas Oncology and I just found out that he treated one of my close friend’s father (I never knew her dad had cholangiocarcinoma – just that he had cancer). He came highly recommended by every doctor I knew in Dallas (A. David McCollum, MD). My surgeon (if I get lucky enough to shrink mine to where they think it can be resected) is Robert Goldstein, who is head of the living liver donor transplant group.

I was told by more than one person whose opinion I trust that I was in a better place at Baylor than going to MDA. One of those was a friend’s husband who is a former med school prof, former Chief Medical Officer of Children’s Medical Center and now head of the A&M Health Science Schools.

Feel free to email me if you have any questions I can answer for you. I’m new to the Board and to CC. I was diagnosed last month. I’m starting chemo tomorrow.

Lisa