ascites

In March of this year, I had one and a half litres of fluid drained from my abdomen. I was diagnosed with Primary Peritoneal Cancerfrom an analysis of the fluid and my medical history but in May, when I had a laparoscopy to confirm the diagnosis, there didn't appear to be any there. My abdomen feels heavy (which is always does to be honest as I also have dense abdominal adhesions and my organs are stuck together)but now I've been told is that the ascites is managed by me. So, when I feel there is pressure, I'm constipated and nauseous, the nurses will do an ultrasound and drain it. The trouble is, I've had 5 bowel blockages before and for three of them, I didn't see it coming. I don't want to go down the 'nil by mouth for a week wondering if my bowel will ever work again' routine in some hospital bed again. What I would like is for my nurses to carry out ultrasounds to see if there is fluid there and then drain it for me. I've also been told that drainage poses its own risks (which I knew) and that they would like to see my abdomen pretty hard, uncomfortable and with signs of constipation before they do the deed. I feel this is a little bit of a back to front way of doing things because I know what a rigid abdomen feels like and I don't want to go down that road. Has anyone any ideas that might help? I would appreciate it.
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Comments

  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    I have no ideas that might
    I have no ideas that might help. I just know that this sounds painful. I hope an alternative comes up.
  • Tethys41
    Tethys41 Member Posts: 1,376 Member
    Doctor's Order
    You could talk to your doctor about having a standing order with interventional radiology for a paracentesis. After my surgery, I produced ascities in volumes requiring a paracentesis every three days. I had a standing order with the interventional radiologists for the procedure. It will depend on the facility, but the hospital here is so small and neighborly, I could go in and have an ultrasound to see if there was enough fluid to drain.
  • eward
    eward Member Posts: 210
    pleurex catheter
    My mom has pleurex catheters to help her drain the pleural fluid from both lungs. She had the right lung drain placed a year ago and the left one a couple of weeks ago. This has helped a lot because she and my dad don't have to wait for her to become too uncomfortable before draining her. I don't know if this will help, but maybe...
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    eward said:

    pleurex catheter
    My mom has pleurex catheters to help her drain the pleural fluid from both lungs. She had the right lung drain placed a year ago and the left one a couple of weeks ago. This has helped a lot because she and my dad don't have to wait for her to become too uncomfortable before draining her. I don't know if this will help, but maybe...

    thanks...
    Thanks both... really appreciate it. It seems from what you are saying is that some kind of intervention could help. The hospital is a large teaching one so maybe by asking the women to wait for pressure to build up is their way of managing a large volume of patients without putting pressure on the ultrasound people. I've had so many operations on my abdomen over the years exacerabated by endometriosis, that I have scar tissue everywhere. It's frightening to find that this is how they intend to manage me and I felt so upset yesterday. I'm going to take your advice and speak to my doctor when she is available because I think they need to put me on an intervention plan as you suggested and let me have access to pro active ultrasound diagnostics. I'll see what she says... I can cope with having this illness so long as I don't have to go through unnecessary stuff... thanks again.... it's really appreciated.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    I had 3 liters drained right
    I had 3 liters drained right after my diagnosis. I didn't even know I had ascites. The only real discomfort it caused was a pain under my sternum, which is what sent me to the doctor in the first place. I thought it was classic gall bladder disease.

    The bad thing about ascites is, it comes back, almost as fast as they drain it off. There is a type of drain they can place and leave in, so that you can drain it yourself. Nancy had one before she died and it was a God send.

    I hope this improves. It's just one more thing we don't need to deal with.

    Carlene
  • Tethys41
    Tethys41 Member Posts: 1,376 Member

    thanks...
    Thanks both... really appreciate it. It seems from what you are saying is that some kind of intervention could help. The hospital is a large teaching one so maybe by asking the women to wait for pressure to build up is their way of managing a large volume of patients without putting pressure on the ultrasound people. I've had so many operations on my abdomen over the years exacerabated by endometriosis, that I have scar tissue everywhere. It's frightening to find that this is how they intend to manage me and I felt so upset yesterday. I'm going to take your advice and speak to my doctor when she is available because I think they need to put me on an intervention plan as you suggested and let me have access to pro active ultrasound diagnostics. I'll see what she says... I can cope with having this illness so long as I don't have to go through unnecessary stuff... thanks again.... it's really appreciated.

    Adhesions
    I've been told that using castor oil packs with heat will reduce the adhesions in your abdomen. I've done it a number of times, and so far so good.
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147

    I had 3 liters drained right
    I had 3 liters drained right after my diagnosis. I didn't even know I had ascites. The only real discomfort it caused was a pain under my sternum, which is what sent me to the doctor in the first place. I thought it was classic gall bladder disease.

    The bad thing about ascites is, it comes back, almost as fast as they drain it off. There is a type of drain they can place and leave in, so that you can drain it yourself. Nancy had one before she died and it was a God send.

    I hope this improves. It's just one more thing we don't need to deal with.

    Carlene

    castor oil and draining the abdomen
    Thanks... I'll ask about the oil when I go next Wednesday. I'll ask the doctor how I can deal with the ascites ... and, yes, Carlene, it's a foul thing just when everything else is going wrong. Before I knew about ascites, I had no idea it was a complication. I don't know where the strength comes to deal with it all. I had a bad day today when I realised how the ascites will affect my life, but I'm feeling more upbeat tonight. I don't know how I would have coped without the people here for support. Thank you so much all... it's much appreciated.
  • eward
    eward Member Posts: 210

    castor oil and draining the abdomen
    Thanks... I'll ask about the oil when I go next Wednesday. I'll ask the doctor how I can deal with the ascites ... and, yes, Carlene, it's a foul thing just when everything else is going wrong. Before I knew about ascites, I had no idea it was a complication. I don't know where the strength comes to deal with it all. I had a bad day today when I realised how the ascites will affect my life, but I'm feeling more upbeat tonight. I don't know how I would have coped without the people here for support. Thank you so much all... it's much appreciated.

    ascites can come and go
    So, yes, it is true that ascites come back when the fluid is drained.........but once your doctors find a treatment that is helpful, ascites can decrease.

    Perfect example: my mom has had increasing ascites and lymphodema in her legs, feet, and even toes over the past couple of months. Her chemo was changed last Thursday and her ascites and lymphodema have decreased dramatically - an indication that this chemo is helping.

    So keep moving forward. Ask questions and get the best care you can find. Quality of life is key!
  • Susan777
    Susan777 Member Posts: 97 Member
    eward said:

    ascites can come and go
    So, yes, it is true that ascites come back when the fluid is drained.........but once your doctors find a treatment that is helpful, ascites can decrease.

    Perfect example: my mom has had increasing ascites and lymphodema in her legs, feet, and even toes over the past couple of months. Her chemo was changed last Thursday and her ascites and lymphodema have decreased dramatically - an indication that this chemo is helping.

    So keep moving forward. Ask questions and get the best care you can find. Quality of life is key!

    eward
    I had a complete abdominal hysterectomy on June 8th. Cancer detected in both ovaries with leakage into the abdomin. About 500ml = 2 cups. Also Cancer was detected in 4 of 23 lymph nodes. So...stage IIIC. Why would the fluid come back if all of the cancer was removed? I start chemo today. Am super scared of the unknown.

    Good luck with your mom....mothers are great. My mom has been so strong for me and taking great care of me.
  • eward
    eward Member Posts: 210
    Susan777 said:

    eward
    I had a complete abdominal hysterectomy on June 8th. Cancer detected in both ovaries with leakage into the abdomin. About 500ml = 2 cups. Also Cancer was detected in 4 of 23 lymph nodes. So...stage IIIC. Why would the fluid come back if all of the cancer was removed? I start chemo today. Am super scared of the unknown.

    Good luck with your mom....mothers are great. My mom has been so strong for me and taking great care of me.

    Susan777
    7 is my favorite number. :)

    Sometimes all of the cancer IS removed. If that is the case, the fluid might not return. Hopefully that is the case for you. Are you scheduled for chemo?

    In my mom's case, since the fluid had spread to the pleural space between her lungs and she also had sand-like grains of cancer in her abdominal cavity, not all cancer could be removed. So it is like a balance scale. When the cancer is being well controlled by chemo for her, she doesn't experience too much trouble with fluid. When there is any new cancer activity, her fluid tends to increase. Thankfully there are ways that the fluid can be managed.

    The unknown is super scary for all of us. I would highly recommend that you find support (our local cancer support center has free programs) in the way of meditation classes. Meditation helps you to learn to breathe and live in the moment.

    And get the very BEST gyno-oncologist in your area. Don't settle for any old oncologist. You need an expert in this field who really knows about the type of cancer you have.
    Eileen
  • eward
    eward Member Posts: 210
    Susan777 said:

    eward
    I had a complete abdominal hysterectomy on June 8th. Cancer detected in both ovaries with leakage into the abdomin. About 500ml = 2 cups. Also Cancer was detected in 4 of 23 lymph nodes. So...stage IIIC. Why would the fluid come back if all of the cancer was removed? I start chemo today. Am super scared of the unknown.

    Good luck with your mom....mothers are great. My mom has been so strong for me and taking great care of me.

    oops
    I just re-read your post and see that you start chemo today. I wish you the best of responses from your first chemo. Rest, take your anti-nausea meds, and find foods you can tolerate for the few days after chemo. Learn to nourish your body. Learn to take a daily nap and get a little exercise (like a walk - nothing crazy). As others mentioned, I would recommend the Anti-Cancer Diet book. Another thing is that most people I know who were diagnosed at stage IIIC do very well. Yes, cancer sucks, but I think it is much worse when you are diagnosed at stage IV (like my mom). That being said, my mom is here 2+ years after her stage IV diagnosis. So that is great!

    The best of luck to you. Keep in contact. I don't mind sharing my email: [email protected] if you need to be in touch.

    There is also a facebook page "Teal Warriors" if you want to join.
    Eileen
  • Susan777
    Susan777 Member Posts: 97 Member

    I had 3 liters drained right
    I had 3 liters drained right after my diagnosis. I didn't even know I had ascites. The only real discomfort it caused was a pain under my sternum, which is what sent me to the doctor in the first place. I thought it was classic gall bladder disease.

    The bad thing about ascites is, it comes back, almost as fast as they drain it off. There is a type of drain they can place and leave in, so that you can drain it yourself. Nancy had one before she died and it was a God send.

    I hope this improves. It's just one more thing we don't need to deal with.

    Carlene

    Why does the fluid come back?
    I had 500ml drained at surgery. Since they removed my malignant ovaries, why would it return?
  • carolenk
    carolenk Member Posts: 907 Member
    Susan777 said:

    Why does the fluid come back?
    I had 500ml drained at surgery. Since they removed my malignant ovaries, why would it return?

    Good question
    Dear Susan

    I suppose the malignant ascites is an indicator that there are still some malignant cells left behind--that is the reason why chemo is used after surgery.

    There is always some fluid produced in the pelvic cavity but it should be minimal. Someone explained that the malignant cells clog the "drains" so the fluid builds up. One of my doctors said that the extra blood vessels that are created by the malignant process are "leaky" and that accounts for some of the ascites fluid.

    This is probably a good question to ask the oncologist. I know that when the chemo is working, the ascites goes away...it can take a few treatments to get to that place.

    Carolen
  • Susan777
    Susan777 Member Posts: 97 Member
    eward said:

    oops
    I just re-read your post and see that you start chemo today. I wish you the best of responses from your first chemo. Rest, take your anti-nausea meds, and find foods you can tolerate for the few days after chemo. Learn to nourish your body. Learn to take a daily nap and get a little exercise (like a walk - nothing crazy). As others mentioned, I would recommend the Anti-Cancer Diet book. Another thing is that most people I know who were diagnosed at stage IIIC do very well. Yes, cancer sucks, but I think it is much worse when you are diagnosed at stage IV (like my mom). That being said, my mom is here 2+ years after her stage IV diagnosis. So that is great!

    The best of luck to you. Keep in contact. I don't mind sharing my email: [email protected] if you need to be in touch.

    There is also a facebook page "Teal Warriors" if you want to join.
    Eileen

    Thanks Eileen
    It is nice to hear positive stories instead of statisitics. I will join the teal warriors!
  • kellyh33
    kellyh33 Member Posts: 287
    Susan777 said:

    Thanks Eileen
    It is nice to hear positive stories instead of statisitics. I will join the teal warriors!

    ??
    Are you Canadian?
  • paris11
    paris11 Member Posts: 159
    eward said:

    Susan777
    7 is my favorite number. :)

    Sometimes all of the cancer IS removed. If that is the case, the fluid might not return. Hopefully that is the case for you. Are you scheduled for chemo?

    In my mom's case, since the fluid had spread to the pleural space between her lungs and she also had sand-like grains of cancer in her abdominal cavity, not all cancer could be removed. So it is like a balance scale. When the cancer is being well controlled by chemo for her, she doesn't experience too much trouble with fluid. When there is any new cancer activity, her fluid tends to increase. Thankfully there are ways that the fluid can be managed.

    The unknown is super scary for all of us. I would highly recommend that you find support (our local cancer support center has free programs) in the way of meditation classes. Meditation helps you to learn to breathe and live in the moment.

    And get the very BEST gyno-oncologist in your area. Don't settle for any old oncologist. You need an expert in this field who really knows about the type of cancer you have.
    Eileen

    Eileen
    I am being treated in Chicago at Northwestern. Can you recommend an alternative medicine doc? Has your Mom been to the Block Center in Evanston?

    Thank you.

    Best to you and your Mom.

    Connie
  • wanttogetwellsoon
    wanttogetwellsoon Member Posts: 147
    Susan777 said:

    Why does the fluid come back?
    I had 500ml drained at surgery. Since they removed my malignant ovaries, why would it return?

    susan ...
    My type is serous (sometimes called surface) papillary primary peritoneal cancer. The cells are microscopic so it took a long time for my doctors to diagnose the condition. I have a lot of adhesions and my abdominal organs are stuck to them and I've been told that it was almost impossible to get in to have a look when they did a laparoscope. Luckily, they found a little channel when they went in from my left side but they couldn't get to the lymph nodes. The cells are epithelial cells which cover the peritoneum as they do the ovaries themselves. I was diagnosed with primary disease because I have no ovaries which were removed when I had a hysterectomy 13 years ago. The cells themselves because they are like their mothers, also produce fluid sometimes which exacerabes the problem. The abdominal cavity needs lubrication so the fluid is not all bad but when too much is produced and its going nowhere, then the abdomen because swollen and heavy. One of the worst aspects is having to have the abdomen drained as many people here would say. Usually, doctors try to leave the abdomen with fluid until its big and carrying enough fluid before they drain it because the drainage procedure in itself carries risks. Luckily, the chemo usually helps to reduce inflammation in the abdomen and also kills off the cells so they can no longer produce the fluid. It's why chemo is good for people who have no hope of being cured but can have their symptoms managed this way. I worry about ascites because of the state of my abdomen. Draining mine is difficult to do and to have to wait until I'm really heavy and big is something I find hard to deal with. It's good news for me as my doctor has told me that the ascites has reduced by itself. I hope so much that this will continue.

    I love being here with so many supportive people... thank you Susan and thank you to you all... :)
  • Susan777
    Susan777 Member Posts: 97 Member
    A question about this evil fluid?
    I had 500 ml (2 cups) drained at surgery. My ONC says it comes back....why? How can you tell. Now i get scared everytime i have heartburn. I also still get full quick. What are the signs that it is filling up again?

    Please advise....

    Susan
  • Susan777
    Susan777 Member Posts: 97 Member
    Susan777 said:

    A question about this evil fluid?
    I had 500 ml (2 cups) drained at surgery. My ONC says it comes back....why? How can you tell. Now i get scared everytime i have heartburn. I also still get full quick. What are the signs that it is filling up again?

    Please advise....

    Susan

    Opps
    I forgot that i already asked the question and that it was kindly answered. I have Chemo brain. IQ has dropped 50 points at least!

    Smiles
  • Susan777
    Susan777 Member Posts: 97 Member
    Susan777 said:

    A question about this evil fluid?
    I had 500 ml (2 cups) drained at surgery. My ONC says it comes back....why? How can you tell. Now i get scared everytime i have heartburn. I also still get full quick. What are the signs that it is filling up again?

    Please advise....

    Susan

    Opps
    I forgot that i already asked the question and that it was kindly answered. I have Chemo brain. IQ has dropped 50 points at least!

    Smiles