Acites: NHS are holding out on me as regards... - My Ovacome

My Ovacome

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Acites

Lymetree
Lymetree

NHS are holding out on me as regards acites. I am carrying about 14 pounds (6.3.kg) n water. They consider it invasive to drain and I did read about a young lady who had it done. It's not nice apparently as you cannot be numbed all the way through to the muscle layer? Its making me feel nauseus, but now I find I am unable to lay on either side as my hips become painful. Laying on my back only will not be good. I'm told acites will go after 2nd round of chemo but that will be 5 weeks away as I haven't started 1st round yet! Advice please!

14 Replies

It is an invasive procedure, but it can be done, is frequently done, and doesn’t hurt too much. There must be a reason why they are trying to dissuade you, but ask them to clarify and explain the discomfort. I just had 4 litres drained and I felt so much better afterwards.

Good luck.

That's no fun :( .

But I agree with Vicki.. maybe there is a medical reason why they won't do it for you ? Maybe they'd give it a try if you step up the complaints a bit e.g. can you walk and breath properly? Because I couldn't, when I was suffering from massive ascites. Tell them how it is i.e. you can't sleep anymore. Hopefully they will give the draining option a second look.

Of my 10 l ascites, 5 l were drained prior to surgery. Honestly, it did not hurt me at all although I'm the biggest wimp you can imagine. And I felt real relief afterwards.

Good luck. Xx. Maus

Lymetree
Lymetree in reply to Maus123

Hi Maus, Thanks for your thoughts. I can still walk, slowly though. Breathing is fairly ok. Apparently I need to be a bit more like a ballon attached to a ballon pump, you know when everyone screams stop or it will burst! So Im not maxed out enough? I could cope fairly ok if it were not for both hips complaining at night. I have no plans to create an inhouse bed sore by lying all night on my back though!

Yoshbosh
Yoshbosh in reply to Lymetree

The hip pain from ascites is horrible. I suffered with that. I had the same pains when heavily pregnant. They completely impact on your ability to sleep. Vicki x

I went into hospital and had my ascites drained and then had my first chemo. It did not return!

I was also told that they didn’t want to drain it before treatment began so as to avoid spreading disease. The process wasn’t painful xx

Lymetree
Lymetree in reply to Lyndy

Hi Lyndy, thats interesting, the disease spreading angle, Ive not come across that before?

My acites disappeared entirely after three chemo sessions. (It may have been two, but the scan was after three). I was rather fearing they might want to drain it, but very happy they didn't have to.

Me too!

My ascites was awful, and they did drain it twice, before treatment. But I did not give me much relief - for what I had not learned yet, was that the fluid that was really bothering me was also in my chest cavity and when it is there, it is a lot harder to drain, and would need to be drained in a separate more delicate procedure. But it was so bad, I could not eat or drink and could hardly breathe. That fluid is called a pleural Effusion and it crushed my lungs so that both were partially collapsed.

I complained bitterly and had to be hospitalised to receive IV Fluids and nutrition, as well as oxygen. The CNS nurse assured me that after my second chemo the fluid would disappear.

And guess what?

She was right!

Just a week after my second round of Chemo, the fluid left me. I sudden could breathe and drink water again. Food tasted horrible, but I could swallow it!

The abdominal draining is a bit painful at the start, but then you feel nothing. However, it takes a long time, about 6 hours, to get it all out.

I think it was worth it, but it came back quickly after the each drain, but never came back after the cancer began to be destroyed by the chemo.

Hooray!

Best wishes,

Laura

Hi

I was drained twice before I started chemo. The first was at the time of diagnosis when 8 litres of fluid was taken. At that point I was in a lot of pain, could not walk and needed oxygen to breathe. The second drain was done 2 weeks later when just 5 litres were removed. Soon after that I began chemo and touch wood the ascites has not been back.

As far as having the drain goes it is a bit uncomfortable having it inserted and they need to drain you slowly otherwise your body can go into shock. This happened to me the first time when they just turned on the tap and left me to it! The worse part for me was having it removed which was painful. My advice would be to insist on having good pain relief before they take it out.

Juliax

I have had ascites drained and honestly it is nothing to fear. It takes a few hours and can be a bit painful towards the end but the relief is massive. I have another booked for tomorrow and am actually looking forward to it! I have just started 2nd line chemo and the oncologist said to go ahead with the drain as the chemo wouldn't impact on ascites straight away.

They would not give me a drain when first diagnosed as they wanted me to wait for the operation and avoid risk of infection. Maybe draining is less of an issue later.

Sorry you are going through this. It can get very tight and painful.

My first drain (4.5 litres) was a horrible experience but that was down to the incompetence of the doctor at my local hospital. It wasn't the draining part (although that feels odd) but the insertion (45 minutes) and removal (a lot longer) of the drain itself. I had the second one (5 litres) done at the Royal Marsden and it took seconds to insert and later to remove the drain. Not painful at all. They couldn't do one later as the fluid was dispersed into small pockets. Could this be what is happening for you? I had some in my lung cavity too. All my fluid went by the end of the third session of chemo but it wasn't enough to be painful after the first chemo. Talk to your medical team again and tell them how bad it is.

I had 9 litres drained off at The Royal Marsden and it was not painful

Once I started chemo I never had ascites again. Maybe you should ask again why they don’t wavt to do it? Good luck with chemo I tolerated it very well!

Forgot to mention that putting a pillow between your knees and under your belly as you lie on your side helped me with the hip pain.

I'm having my ascites drained now and it is going smoothly with very little pain. It really is worth pushing for this procedure if you want to get some relief from ascites.

Louise

Lymetree
Lymetree in reply to Lou53

Hi Lou53, thanks for that tip. I have just discovered that if I lie almost completely flat in bed - I had previously elevated my pillows, I am more or less ok. Obviously the more spread out the overall body weight the better. My current pillow is almost flat.

Good luck with your drain. xxxxxx

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