Varices

[ILik3Pizza]

I'm currently asymptotic at stage 4 (except for the fatigue!) but wondering if there are any "warning signs" to look for regarding the development of varices. I had an endoscope in January and things were normal. I live in a very rural area (liver specialist is 3 hours away!) and would like any insights into this symptom you'd be willing to share. Thanks

[Michiganpbc]

Hi I don't have any information to help you but the liver doctor you saw could give you some or refer you to a reliable source also the doctor who did the endoscope can send you some information or tell you where to get some. Have you looked at some reputable sites like mayo and liver foundation ?

[ILik3Pizza in reply to Michiganpbc]

Actually, the liver specialist in Ann Arbor hesitates to even mention PBC, even through my AMA and smooth muscle are both positive and the liver biopsy showed stage 4. She says the definitive test is a scope of the bile ducts which to too dangerous to do! Hence, she prefers to treat the fatty liver issue with diet. I'm pretty sure even weight loss doesn't reverse cirrhosis. I read everything I can find on cirrhosis (since that's actually what's "gonna get" all PBCers in the end); I know about varices and how they occur and what happens as a result, I just wonder if there's any "warning" before it happens.

[Michiganpbc in reply to ILik3Pizza]

Are you on URSO for PBC?

[ILik3Pizza in reply to Michiganpbc]

Yes. 600mg twice a day

[Shulsey]

Hello, Im stage 4, cirrhosis & small esophageal varicies. The only thing I can tell you is my own personal experience, it's sort of a scary one. I had no signs of the varicies or that I was at stage 4 until a year ago this past May. I had been down for almost two weeks with the flu. I tried going back to work & realized that I was extremely bloated, almost looked pregnant I was so swelled. My hands & ankles were swelled also. I had a appointment coming up with my GI. Which I was thankful for. He ordered a ultrasound to see if there was fluid in my abdomen. That was a Monday, I was off work the next day. Wed morning about 1:30a.m. I woke & felt like I had a lot of indigestion, badly. I started belching & ended up over the toilet puking straight blood. I never made it to the ultrasound appointment. I puked so much blood that I had to have a 2 pint blood transfusion. I was hospitalized for over a week. Had three bleeds that were banned & they found a ulcer as well, go figure. I have regular EGD's now. So far the varicies have not grew any more nor have I had more bleeds. You know your body better than anyone. So, if you're worried you should speak with your specialist to explain your concerns. This was definitely the scariest part of having PBC. It has placed limits on what I can & cannot, or shouldn't do. I had to resign from my job & now I am going through a disability claim. The restrictions I have through my heptologist make it next to impossible for anyone to want to hire me for work. Plus all of the time that I'll need in the future for appointments & procedures. I hope this helps a little.

Stay strong❣️

Shannon

[ILik3Pizza]

Thanks for sharing. Your nightmare is pretty much what I envisioned. Did the abdominal "bloating" disappear afterwards? Wondering it that's an indication that things are "boiling up." I am very grateful that I'm not employed with this disease; it's a blessing not to have to worry about getting into work each day and dealing with all the stress of a job.

[Shulsey in reply to ILik3Pizza]

Yes, the bloating went away after. It was really difficult to eat after all of that for me. I lost a lot of weight that I truly did not need to lose. My hep said that lifting anything over 25lbs is a big NO NO. He said it could cause more growth & bleeding. That worries me because Im just 43 years old with kids, 19, 10, & two 8 year olds. It's difficult to tell what is too heavy or what's not too heavy. I worry constantly. I still try to keep up with my housework & whatnot. It has been a little easier since I no longer work.

[ILik3Pizza]

Oh my. I'm 67 with grandkids all under 6 and definitely over 25 pounds! Thanks for sharing your story.

[Hidden]

Hi ILik3Pizza,

Shulsey has given you a good description of what happens when varicies burst - mine haven't burst yet, so can't give you any information about that, but I can explain how I found out I had varices.

My 'new' specialist had sent me for an ultrasound which showed cirrhosis (hadn't known I had moved into Stage 4, bit of a shock), enlarged spleen (main reason for my low platelets), and some issues with the portal vain, this, coupled with the results of a subsequent fibroscan (30) prompted my specialist to order an endoscopy which revealed Grade 1 varicies. So now I have an annual endoscopy - my last one showed that the varicies are now Grade 2, despite me taking beta-blockers ;-(

[Shulsey in reply to Hidden]

Yes, I did forget to add that my spleen is enlarged, as DianneS stated. My liver is enlarged & spleen is the same in size. I seem to feel rather full all of the time. Guessing that's why I hardly have a appetite

[Hidden in reply to Shulsey]

I'm the same, I'm rarely hungry, but, if I don't eat on a regular basis I will suddenly become faint, nauseous and begin to throw up - I'm pretty sure that this last bit is not related to having varicies though.

[ILik3Pizza in reply to Hidden]

Thanks for your insights ladies. I am certain I would prefer to avoid this symptom! The uncertainty is so difficult. So glad for my faith; I know HE'S got this!

[Shulsey in reply to ILik3Pizza]

I have a strong faith as well, I leave it all to Him🙏😌. & you are very welcome!