Is this Ascites?

[tommyc]

Hi Gang,

I was dx with Cirrhosis aged 24 in Jan 2006, secondary to Hemochromatosis, all investigations were as a result of having Heart Failure, as a result I also have Pituitary disease (Growth Hormone Deficient - Cirrhosis is rendering treatment, useless), Type 1 Diabetes, early neuropathies & Atrophic Pancreas, Sarcoidosis induced Pulmonary Fibrosis/Lung Disease, Portal Hypertension (Spleen 22cm at dx, now at least 25 cm as spleen doesn't fit superoinferiorly in Ultrasound), Cognitive Impairment, various joint issues, MELD 13, UKELD 56 (at last clinic appointment 10 weeks ago) etc, etc

I'm writing this as last week I had to go to the toilet after every meal, no diarrhoea as constipated most of the time, however I felt my stomach was swelling but it eased off every time. Anyway, over the last couple of months I've been weighing myself using the local GPs and Pharmacies integrated scales/heart rate monitors, I'm sure you know the one and over the last 6 weeks I've put on 17.6 pounds or 8 kilos.

Now I've never put anything like this on in my life as I've always been skinny, possibly due to the GH deficiency co-exist with Liver Disease and as far as I'm aware, Liver Disease is associated with weight loss that is until Ascites occurs at end stage.

Does anyone agree that this is likely to be Ascites? I never even thought it could, be despite the weight gain, I thought it may be Pancreatic Insufficiency due to the Atrophic Pancreas.

Any comments would be welcomed?

Tom

[Catfishjumpin]

It sounds like liver disease and it certainly sounds like ascites. Good luck. I get drained on friday but am only holding 2. To 4 lbs. of fluid. Its the worst symptom i have.

[tommyc in reply to Catfishjumpin]

Cheers for the reply.

I'm struggling getting into a 36 inch waist trousers now and I was stick thin, still am bar the abdomen area, how long have you had it Cat?

[Catfishjumpin in reply to tommyc]

4 times since 2011 but only one drain, as i have become more ill, it has been more difficult for me to keep the fluid down. I am the same size except for now my entire truck of my body is larger. I do not weigh much but i do look pregnant. Until 2016 arrived i was perfectly fit. I miss that. I have run out of time and have been told its a short matter of time until i die. I cannot be transplanted. I have liver cancer in my liver that masticated in my lungs. Can you ask to be drained. Its best to limit fluid to 6 cups a day and eat no more than a thousand mg of salt a day. Food should never be salted. Are you on fluid pills. I cannot often take them as they throw my potassium level dangerously low, that could kill me.

[julieju in reply to Catfishjumpin]

Hope all goes well with your drain x

[Millie09]

Hi Tommyc . I was diagnosed with cirrohsis in 2008 . I had bad ascites ! I was only small yet my tummy made me look pregnant with triplets . No joke ! My fluid started in my feet and ankles , within a month I had it in the stomach . Was in so much pain . Couldn't sleep , eat , walk . Had tachycardia and admitted to hospital where I remained for 6 weeks . I was drained 3 times .alcohol was the cause . No one that I know of that has liver disease is thin . I never was , only after my drains due to not eating . So 8 yrs on my liver is working fine . Don't know how long it will stay like that but I consider myself very lucky . If you have ascites you will know . It continues to get bigger around the Tummy and if you lie down your tummy still sticks up so to speak . It could be fluid but from where I can't comment due to other ailments . Go see your dr . They will sooo. Tell you . Good luck !

[susieanna in reply to Millie09]

i know someone who is thin all over with liver disease. I guess that's a more positive sign for the time being!

.

[tommyc in reply to susieanna]

I suppose it depends if you think of malnutrition as positive, it can prevent end stages from being listed.

[susieanna in reply to tommyc]

well, its still better than having acites; though not good to be so thin re muscle wastage of course.

[millymo]

Where have you put on weight? your ankles or tummy?

[tommyc in reply to millymo]

Abdomen area, I haven't noticed fluid around the ankles, they said the same would happen when i had Heart Failure but I never encountered the ankle oedema. Tbh, my abdomen has been increasing in Circumference for years but only gradually, unlike now which I can backup with the scales print outs, from the sounds of things, if I have ascites I'm classified as Decomp however I'm getting the impression I'm no nearer to surgical intervention??

I've saw numerous end stage patient photos where they are stick thin, anorexic (for various reasons) and the associations of cirrhosis with bone thinning, muscle wasting and hormone impairment, which is why I assumed everyone was like that.

Thanks for your response guys.

[millymo in reply to tommyc]

I think you might be right about ascites, a trip to the drs to confirm, but they don't usually do a drain until your tummy looks like it might pop, I hope you get sorted and get what you need, all the best to you.

[Ticchic66]

Hi Tommy. Sorry to hear your troubles. I have Bud Chiari Syndrome which causes me to have ascites. Untreated, I look about to give birth and this has been going on for over 2 years. Mine is quite successfully controlled by water tablets (spironolactone) which I am allowed to adjust the dose of when required. I think the ascites is a very common symptom of the liver issues and obviously varies in severity depending on the diagnosis. I would ask your doc and hopefully add something to your list if mefication to keep it under control (cos you can never have too much medication , right?). My belly button protrudes from first thing in the morning to last thing at night. Only look about 4 months gone most of time due to medication 🙄 I hope this helps and I wish you well 💕

[Jiff in reply to Ticchic66]

Hi all. My first post on any forum..but hopefully if it helps. I've been carrying a big stomach for 10 years though not a big eater and not really beer drinker. I liked my wine and found I'd be downing a bottle of wine a day with all the time as I'd been made redundant. This year the belly got bigger and all joked I was conceiving, and I laughed along too until it was so huge and painful I couldn't even get down to put on shoes. I was submitted a month later with AS cites,oedema and liver disease and was tapped for 6 litres. I lost 2.5 stone in 4 weeks ( was 16.5) which never came back as 6 months dry. I'm now 12.5 stone as my liver doesn't work from years of socialising which is all my fault..

Tommy I'd get it tapped if the gps agree. It's about 3 days getting pumped with vitamins before they'll do it. I really had to emphasise the pain though and ended up telling the staff nurse before they prioritised me. Hope it all turns out well for you all I have many points to share, even down to why U.K. Is years behind the Europeans on no alcohol beer, but better get some shut eye for now take care

Jeff

[Paulineunderstand]

The doctor will be able to tell by tapping your stomach but can also see on a scan. mri for sure and maybe others. diuretics can help. it can be caused by heart failure. my boyfriend was in the heart ward for a while but it's been decided it is liver now.

[tommyc in reply to Paulineunderstand]

I think mine, if it is Ascites, will only be picked up by an Ultrasound which I believe is mild Ascites, I think the fact that my Spleen is excessively large even for a person with Cirrhosis, approx 25 cms and can't be measured precisely due to the total size of my spleen might be adding to the discomfort, thanks again all for your comments.

[DibsFox]

Go and get checked out . If you can go to a hospital with a Liver specialist. Frankly you deserve good care .

[tommyc in reply to DibsFox]

Cheers Dibs, I have all the necessary referrals, specialist etc, the symptoms appeared between Gastro appointments hence asking the question, it wasn’t ascites but have since been Transplant listed in October so just keeping my mind occupied, fingers crossed.

Thanks again for the response.

Tom

[DibsFox in reply to tommyc]

Good Luck with everything and glad you have been reviewed properly .