Ascites Long Term

[redlion1954]

Hello All, I've had Ascites now for eighteen months. At first I confused the symptoms with a hernia that I had which has since been repaired. After a visit to my GP, he told me I had IBS and gave me some pills to alleviate that. Two weeks later I was back at the GP's. This time he examined me and said I had fluid in my abdomen and that he would write to the consultant who was overseeing my hernia at that time. This was no good to me so the next morning I went into A&E. I spent a total of nine days in hospital just waiting around taking up a bed. I didn't get drained until the seventh day and the drain was left in for twenty five hours ! Since then I've had five cancelled consultations and two actual appointments. I've also been assigned to a specialist gastro/liver nurse team who monitor me and do my drains, a total of seven so far. I've had MRI, CT, Ultrasound scans, an endoscopy, a biopsy, scores of blood tests/fluid tests etc. My medication includes spironolactone and furosemide but at the moment my spiro has been stopped as it affects my kidneys at times.

No cause for my ascites has been found and the gastro consultant appears to have given up and has passed me on to geriatric medical. I am 69. I am waiting for an appointment.

I did have Covid the month before my ascites started.

So my question is, does anyone else have long term/undiagnosed ascites ?

[WayCas]

Sorry to here about all your problems. Very typical of liver problems. You didn't mention the portal vein or beta blocker medicine. Have these been considered?Wayne

[kensimmons in reply to WayCas]

Not a doctor, but ascites can also be caused by heart problems.

[Segy in reply to WayCas]

Sorry to hear pal hope u get on the mend

[juneblue]

Ascites is a symptom. Mine was caused by my liver being unable to process the poison from alcohol. Eliminated the alcohol, however the damage to the liver took its toll. Liver still having problems filtering the blood. Ascites seems to have started reversing. No alcohol. Watching sodium intake. Good diet and exercise has helped. Hopefully I didn’t do to much damage and it can repair enough to get off meds and never have to be drained again. Out of all the side effects of liver damage, ascites has been the worst. Alcohol is the easiest cause to diagnose and treat. Of course there are other causes that could be the culprit. My point is there could be liver damage that was caused by something that somehow was eliminated either by the body or something you did. Good luck with everything and God Bless.

[Segy in reply to juneblue]

Hi Juneblue it sounds very similar to my story, I've stopped drinking for 7.5 month. I have cirrhosis ov liver. I've had about 16 drains, once a fortnightish. I've got a specialist on the 19th and he wants to put a stent in. (TIPS) which I am reluctant to do, but just fed up being drained! I had 24 pints of fluid took. But bk again this weds for another. Any advice would be very appreciated. Thanks

[juneblue in reply to Segy]

Haven’t been referred for TIPS. Ascites is sporadic. Once twice in 10 days. Then once in 3 months and so on. If I deviate from my diet or miss my diuretic meds, tends to come back. Maybe just needs more time to heal. I’ve heard so many different medical opinions from drs and patients about the livers ability to heal , I don’t know who to believe. Some say that if 25% of the liver is healthy enough, that the liver can heal enough to live a healthy life. Some say it won’t heal, ever. I’ve heard one patient that said his liver figure out a new way to survive, that baffles the physicians. The body is amazon. Know one knows everything that could possibly happen in there. There are to many physiological events that could take place. I think the best advice to you would be to concentrate on overall good health. All the systems work together. Exercise, diet and positive attitude can go along ways. God bless. And happy travels.

[Segy in reply to juneblue]

Have u heard ov any wonder cures? Not feeling TIPS 😕

[juneblue in reply to Segy]

Hey Segy, Haven’t heard of any wonder cures for ascites except for the liver it self healing enough to do it’s job. I can say that excessive exercise, even when I don’t feel like it, helps me a lot. I also added a half of raw onion a day to my diet after my last bout with ascites. Tends to help me. Love ones and friends won’t appreciate it. Lol. There’s just not much out there on ascites, since it is a symptom of liver damage. There is some interesting research being done on a certain protein created by the liver, that when stimulated by some medication, will attack the collagen that causes the scarring. Don’t have study readily available. Hope this helps. God Bless.

[Segy in reply to juneblue]

Thank you juneblue, I might just have to av it done😕 wish I didn't smash alcohol for so many years!!! No use crying over spilt milk.... thanks again me duck.

[redlion1954]

Sorry all, i've missed some vital info. My liver, kidneys and heart have all been cleared. I have good blood test results. No signs of any illnes other than this relentless ascites which i've had for eighteen months now. The doctors can't find anything wrong with me that would cause it.

[Dustyblue2 in reply to redlion1954]

Have you had a liver biopsy yet? My brother has refractory ascites ( fluid keeps coming back after drains) due to portal hypertension, the doctors could not find out what was wrong until he had a liver biopsy and Nodular Regenerative Hyperplasia was diagnosed, which is a rare liver disease. It is NOT alcohol related.

[redlion1954 in reply to Dustyblue2]

That's interesting. No i've not had a liver biopsy. My consultant is pretty useless to be honest, devoid of ideas. I had a permanent drain fitted in November and i'm draining either one or two litres of fluid per day. My next appointment is July 23rd but that's ridiculous so i'm going to ring up the consultants secretary in the new year to try and move things forward. I did have a test done of blood and ascetic fluid in November which according to the consultant was supposed to determine the source organ of the problem, that is, if it is the liver or the pancreas. I've not been told the result yet !!!!!!!!!!!!!!

I feel a strong complaint coming on after twenty one months !!!!!!!!!!!!

[Mufan99]

You must be quite exhausted by all this, I really wish you all the best. I'm not medically trained so I can only offer a few insights from caring for my partner who was diagnosed with liver disease (Nash) 13 or so years ago. My first tip is, if possible, never go to an appointment on your own. Ask your partner or a relative or friend to go with you. They can listen in the background and pick up the things you miss because your mind is racing. The change of department may not be as alarming as it sounds. I hope they will continue to investigate your issues and discuss you in cross-departmental meetings. My partner was quite surprised to go to the hospital day unit for a regular endoscopy check up and the doctor performing the procedure said "Mr.... we haven't met but I've heard a lot about you. " On the diuretics, they are quite fierce and sometimes the body needs a rest. My partner was hospitalised because of very low sodium and had to stop Spiro for a couple of weeks and then slowly getting to back to his maintenance dose with fortnightly blood tests. It has taken a month or so to get back to the 'sweet spot' where his tummy and ankles aren't troubling him too much. Very gentle exercise, eg walking on the flat, just moving and getting the muscles to help the circulation, and a sensible No or very Low sodium diet help the tablets do their job. I didn't know that very low sodium can cause 'brain fog' or confusion, so that is something to look out for. These are very general observations. I hope some of them feel relevant. Best Wishes Andy

[redlion1954 in reply to Mufan99]

Thanks for that.