Terrible gas pain with ascites

I have a bit of ascites in my belly, and my ankles are swollen right up my legs. I take the highest dose of diuretics they will give me. I avoid salt. I am listed for transplant, MELD 18.

This evening, I started getting terrible gas pain in my upper abdomen. It was about a 7 or 8 on the pain scale. I took some gas-x and some tums, and some pepto bismol, to no effect.

The pain was very bad. Burping helped, but my whole upper abdomen was distended and firm with the gas. Finally I felt nauseous and threw up. But the only thing that came up was air. It was a great relief when I would wretch to "vomit" the air. Nothing else came up.

In the last five hours, I've done the throwing up air thing several times, I've had several normal bowel movements, I have burped almost constantly, and I have (pardon the indelicacy) farted out huge quantities of air. Non-smelly air, by the way.

I am still in terrible pain. The burping continues unabated. The farting comes and goes, The pain is very bad, right now it is mostly behind my belly button, where I have a hernia. But the hernia is not popped out, nor do I think it is strangulated in any way, as the gas is coming out of both ends.

I called the hepatologist on call, and she had nothing particularly helpful to say, other than to go to the ER, as a 7 or 8 is a high pain number, and this concerned her.

We went through all the things like lactose intolerance (no), carbonated drinks (no), etc.

She said that pain and gas can be associated with ascites. I have never had a paracentesis, as my ascites is always found to be in little pockets all over the place, and not in one area where they can suck it out. I've had a thoracentesis, but at that time, I was short of breath and you could see all the fluid on x-ray. They sucked 1.5 liters out of my lungs. This was about 5 months ago.

Has anyone every had this sort of terrible gas pain, bloating, nausea, etc along with their ascites? I've been releasing large quantities of gas out of both ends for 5.5 hours, and there seems that my body must be making more, because relief from the pain never comes.

I'd go to the ER, except that is about 1.5 hours away, and the last time I went there I was in the ER for over 24 hours before I got a room. Ah, gotta love those big NYC hospitals!

At this point, I am going to give it a few more hours, and if the pain/burping/farting/bloating persists I guess I'll have to go in to the ER.

Again, has anyone ever had anything like this? I've got autoimmune hepatitis, but at this point my liver is a shriveled cirrhotic mess. There is no longer an autoimmune attack. Just an almost dead liver.

Thank you for any suggestions you might have. I'll be checking here periodically, unless I actually feel better and fall asleep.
schimbare

Some at home have suggested more gas-x I will have someone run out and get some brand of simethicone to settle the burping. I already take prilosec. I wonder what else my MDs might suggest.

I still have the pain and burping and farting, now at 8:30am. I got a few hours sleep - but I feel like hell. I don't have diverticulitis, thank goodness. The pain is about a three. It is minor in the grand scheme of things

Leave it to me to have something that no one else here has suffered from! Not that I want anyone to have this burping/farting/pain thing. We all suffer enough with the normal liver related issues.

My plan for now it to hit the couch and try to sleep. Maybe the upward incline will help get the stomach gas out. I am taking sips of water, just to moisten my mouth.

I will likely call the transplant people if this continues or gets worse. And they will say to come in. To sit in the ER for hours and hours. Unless you have been there, you cannot imagine what the ER is like. It is obscenely packed with all sorts of fakers and legitimate patients. And the fakers are all moaning for pain medicine because they are addicts. And the legit patients usually suffer in silence with their worried relatives standing around them . The space for the beds leaves about 6 inches on each side of the bed, with curtains between. There really is no room for a chair for family members, but we squeeze one in if the person next to me is alone.

I adore the care I get in the transplant unit. Best in the world. But the ER is the only way to get a room. After missing a good night's sleep and being in pain, and my caregiver missing his sleep, we are in no mood to have the patience to go through the ER ordeal. If I go back to Sinai, it had better be for a new liver, and certainly not for painful gas.

Ugh.

Any other ideas are welcome, especially if you have had this particular brand of painful cirrhotic side effect.
Schimbare

How are you doing today? Has the gas resolved, or did you go into NY? Sorry I did not get a message off to you, kiddo. Missed your post somehow. Thinking about you today. Big Hugs

Friends,

I am going to continue this over on my Transplant Journey thread. I will see you there.

BTW, I feel good....second day in a row!! Shocking!!

(ok, addendum here - ascites is in belly and now lungs...I can feel it when I breathe. Feet and legs are all swollen, hernias pop in and out so I must use a scooter to go out anywhere where I have to walk. The oral lichen planus hurts and is not healing with the cortisone gel I've been taking for several days, and the stitches have dissolved, but I still have a sort of vertical slice in the middle of where the lump was. My eyes are yellow. My mouth is hopelessly dry without adding constant moisture. And my diet is becoming more and more constricted. Protein intake is becoming an issue, because my mouth hurts too much to eat other than bland mushy foods, and if I do eat a few bites of chicken, it sits like a rock in my stomach and starts the burping again.)

OMG, thank you so much for being here to write that all down. It is cathartic to see sometimes how many things are wrong with me, and give myself a little credit for making it through life in a generally happy manner.

I feel good. I do!! I am going to buy a few songs off of iTunes to have on my computer and phone for when I am sicker and in the hospital - hopefully in New Orleans!

It is VERY hot and humid here. Yuk.

Feel Good All!
Susan

OMG, I need pictures!!