External drains Help please
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Hi Jen,
Yes everyday is a blessing. Somedays it so hard to believe Dad has got CC, as he still feels well and does everything he did before he was diagnosed. Apart from these pesky stent problems we are counting ourselves lucky compared to what some people go through.
Did they ever say that your Dads drain was temporary? and does he wear it on his leg?
Hi Betsy,
Thanks for all your advice, specially re the blood loss after the procedure. I told Dad and it seems to have made him more at ease knowing this can happen.
Best wishes to you both
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
Dad had an external and internal fitted at the same time. While the internal drains were working, having the external to help drain the bile (I can’t remember what his bili level was at, but well over 200), it helped to drain the “excess” bile quicker. He actually still has the external drain – I think somehow seeing the bile drain makes him feel better, and when it’s not working well he knows something is going on. No idea how the internal drains are now since he’s had the external so long (basically since he was diganosed in January).
You are right – it’s an amazing blessing that our Dads are still with us and as comfortable as can be expected… sometimes it’s so hard to see the positive side of things, but I think if we didn’t try, we would all lose our minds…
Thinking about you and your family….
Jen
Thanks all,
Dad is feeling well, had a slight temp Friday night but didn’t last long. He’s eating well and said only slight discomfort around where they have inserted drain.
No doctors have been to see him yet, sign it’s the weekend! so he still doesn’t know fully what they have done. The Nurse who was with him whilst he had his pct said it’s only for a few weeks and it’s an internal/external drain?? Anyone had this sort of drain?
I presume because his other stents are working this drain is helping the kinked stent release the bile. They have mentioned rotating antibiotics too so his system doesn’t get used to them.
Was a bit concerned there was blood in his bag and also a clot but bile is coming through now. His bilirubin was 200 before the procedure and 201 now, but it has always gone up slightly after he’s had his stents fitted/cleaned, I’m guessing its all the backed up bile flowing around his system. He also seems more yellow, funny how it doesn’t take long to go yellow but ages to lose the colour!
More waiting but hopefully we will know more Monday.
Best wishes
Hi Andrea,
Sorry to hear that your dad has had another drain fitted. I do hope that this works as quickly as possible. I know that this must feel like yet another hill that needs climbing, but please don’t give up hope. As you say, your dad still feels well so lets hope this works. Fingers crossed!
Best wishes to you and your dad,
Gavin
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
Thanks so much for all your ideas. Dad has been given straps but the idea of the carabiners sounds good. I’ve just been to see him and he’s under the impression it is not permanent and they’ve decided to do this so he can get his chemo quicker. Will know more tomorrow when the doctors have been round. One of his metal stents has kinked, and they have mentioned trying to insert a plastic stent but at the moment with plastic stents having to be changed more often it would probably put back his chemo. More waiting. Mom was a bit upset but I said at the end of the day, he’s still with us, still feels well so that’s all that counts.
Once more thanks again.
Best wishes to all of you
When I go to church or somewhere “nice”, I clip mine to the waistband of my skirt or pants with a BIG binder clip (those clips they use for documents in offices.) Holds well but not convenient for ladies going to the bathroom… no problem for men!
Otherwise I have a little totebag that I wear with the strap diagonal across my chest. The bile bag tucks inside and the tube hides behind the bag. Works perfectly and I sometimes forget it’s there.
Hope everyone’s ideas help!
Kristin
Dad uses those little hooks people use for mountain climbing (carabiners) to hook the bag to his belt loops – you can get pretty small ones, and we found them at a dollar store. If he is wearing something without belt loops, he uses pins, much like Teddy. Both seem to work, but the carabiners are much easier to manage for him – easier to open and close.
I dont have any suggestions. I just let mine hang on out. External drains can be tricky. Hope your dad sails through his.
Just a reminder to keep it clean as it can become clogged and infected.
Kris
Hi Andrea, so sorry to hear another drain has been added. When Teddy had an external drain he wore it under his shirt and safety pinned to his ‘under shirt” he found this to be the most comfortable. They also have a leg band that holds it to the leg but he didn’t like that. It actaully was not that bad for him, hope the same for your dad.
Hint: there is a ‘paste/glue’ that can be put under the adhesive of the drainage bag, don’t remember the name. It keeps the glue from the tape that holds the drainage bag to the skin from getting irritated and keeps the bile from leaking.
If someone knows the name great otherwise you will have to ask a nurse. I used to clean and change it like every other day to keep the irritation away. Good luck.My dad has been fitted with an external drain as this is the best way to get his bile level down quick enough for chemo. His metal stent on his left site is kinked and along with the tumor and biliary sludge it keeps blocking.
My main question is any advice on how to wear it without it being on show, as this is my Dads main worry? He already has to deal with an illeostomy bag so I think he’s really down about this but if this could be sorted I think he’d be happier.
Thanks in advance
Andrea
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