has anyone had a permanent drain fitted for ascetics !

[Mango5cm]

my son has decompenssted cirrhosis and has 3 drains for ascetics usually removing 10 litres. He is having a permanent drain fitted next week and is worrying about it . Has anyone had one fitted ? Does it help ? Do nurses have to cone and empty it ? Has it improved the quality of your life . Sorry for all the questions - I find it helps to know what other people are going through . He has had no alcohol for 9 month . Thank you

[Hidden]

I had a drain fitted after I received my transplant. I was taught how to empty the bag that was attached and how to replace it when necessary. Not sure if this is the same thing but whatever your son is given I am sure he will be taught how to manage it.Hope this helps.

[Mango5cm in reply to Hidden]

Thank you for your reply - he’ll have a bag fitted so hopefully it’ll mean less visits to the hodpital for drains . Can I ask when you had your transplant - hope you are keeping well . Regards Carol

[Hidden in reply to Mango5cm]

I had my transplant just over 4 years ago at the age of 70 and all was well until about 6 months ago when I had ascites again. It’s nowhere near as bad as before I had the transplant and that took 3 weeks to drain after the operation. I’m waiting to see what happens next!Best wishes.

[Mango5cm in reply to Hidden]

Thank you so much for your reply and I do hope things continue to go well for you . Knowing how other people are managing liver problems really helps us to try and stay positive . So pleased your transplant went well . My son went back to the hospice today and they drained another 8.5 litres. He’s going back next week to get the stitches out . Anything that helps the quality of his life is something to hold on to . Thank you for your help .

[Ishmailsannoh in reply to Mango5cm]

I hope you are doing okay now

[Mango5cm in reply to Ishmailsannoh]

Thank you it’s my son who is I’ll - he’s feeling a bit better after the drain . Hope you are keeping as well as you can be

[Bikafella in reply to Hidden]

I had Ascites badly in the 4/5 months preceding my transplant in 2017. The hospital didn't drain anything until the transplant (they were inserted during the op'). Have two tiny circular scars as a reminder (quite faded now). I understand they didn't want to drain before op to avoid introducing any possible site that could lead to an infection. The drains were in for about 7 weeks (a lot of fluid) emptied in hospital by nurses. I haven't heard of a "permanent" drain being fitted as its not a really ongoing situation just until t/p done.

[Hidden in reply to Bikafella]

Yes that’s the same for me. Mine took 3 weeks to drain and now, 4 years on, I have ascites again. The hospital is trying to find out why as blood tests show my new liver is working fine. We shall see!

[Bikafella in reply to Hidden]

I hope it's rectified quickly for you!

[Mango5cm]

Hope both of you are keeping well .I try not to worry about my son but it is so hard to keep positive . Regards Carol

[AmericanDemocrat]

Hi, Mango —

(CAVEAT: I’m in the States, so my comments below may or may not apply.)

First, well done to your son for not drinking for nine months. That’s a great start. He is lucky to have your support. I’m sure this is hard on you.

My best friend was fitted last year with a permanent drain after 2 years of thrice-weekly ascites drains at the hospital. (Her ascites is the result of Stage 4 cancer, but I don’t believe this matters in terms of your question.) Some hints:

(1) You’ll likely be receiving LOTS of medical supplies for each drain, so have some space at home cleared out to keep track of everything.

(2) Despite having a home care nurse help her for the first 2 weeks, my friend still found the self-drain process to have a steep learning curve. Just be prepared for that and try not to get frustrated or anxious, since that will only make the process more difficult. Take deep breaths and try to relax. The good news is that eventually the drain insertion process will become like second nature to your son.

(3) I don’t know if the UK is having supply chain issues right now, but if you are, try to work things so you always have 2-3 extra drain kits available for those times when supplies might not be delivered on time.

(4) When being drained in hospital, the technicians always took out the full amount of liquid present in my friend’s abdomen. But at home on her own, she was initially limited in the amount of ascites that could be withdrawn per session and per week. (This was because she was doing it without medical supervision, and her docs wanted to see how her body reacted.) Although she was eventually permitted to drain more, she often felt uncomfortably full during that first month or so. So, you might want to ask in advance about any restrictions. If there are any, ask if your son can go into the hospital for an “extra drain” in the event he’s uncomfortably full at any time.

(5) At one point, my friend developed an infection at her drain site. Nothing was visible and she didn’t feel pain. Her infection was only found after she wasn’t feeling well and a young, astute doctor suggested that the site be cultured. I don’t want to worry you, but do want you to be aware of this possibility. Rest assured that a course of IV antibiotics took care of the problem.

(6) My friend was taught to empty her own bottle of ascites after a drain. At first she disliked this, but quickly became immune to it.

*** Overall, my friend is glad to have the permanent drain. I hope your son feels the same way after the initial adjustment period. Sending you best wishes on this health journey.

[Mango5cm in reply to AmericanDemocrat]

Thank you so much for your comments and advice I really appreciate it . They drained another 8.5 litres today and he’s feeling exhausted. Hopefully he’ll be a bit better tomorrow . I hope your friend is doing well - sending best wishes Carol x