VARICES

[HelenTM]

I went for an endoscopy a few days ago to check my peptic ulcer and ended up getting 3 varices banded. For the first time in this PBC journey I feel very alone. Haven't seen my consultant yet. SO worried about not being here for my kids even though they are 23 and 25. Can anyone give me some positivity.???

[Ktltel]

HelenTM,

I'm sorry to hear about the varices. What stage were you when you were first diagnosed back in 2011? What are they staging you at now? Are you still on URSO or Ocaliva?

Stella

[boneytoys in reply to Ktltel]

I worried about that 10 years ago and now the time has gone by and the status quo remains

It is what it is and they are getting in with their lives as must you

My kids never ask me how u am in terms of pbc I think they just hope for me

I have to raise it mostly because I appear to be well despite various procedures over the years

Vest la vie

[HelenTM in reply to boneytoys]

What great advice. You have cheered me up with the ten years comment. I am in a better place now and usually have the same attitude as you just had a bit of a wobble, felt really sorry for myself. Ready for fighting back again now. Thank you.

[butterflyEi]

Hi HelenTM

I have read on other sites of people having varices banded and going on to live a good and full life. Hope you do not have long to wait for the consultant but if you are worried and have a GP who understands PBC you may be able to talk to him/her about it or otherwise speak to the secretary to the consultant and find out how long the wait is before seeing him/her.

Advice from most sources suggest a plant-based diet that's full of fruits and vegetables. Select whole grains and lean sources of protein. Reduce the amount of fatty and fried foods you eat. Not too much fruit though as they are rich in natural sugar. If you eat red meat then it is good to reduce the amount but red meat is still needed for the nutrients it gives us. Try walking 20-30 minutes a day as this will help keep the whole body in balance and if you are over weight losing some will take some of the pressure off your liver.

Please do try not to worry as stress is an enemy to our system, enjoy your children in the now make plans have happy memories to overlay these ones that are bringing you down.

best wishes

[HelenTM in reply to butterflyEi]

Fabulous advice and I will take all of it on board. Didn't realise about the fruit. I eat loads of fruit and didn't realise that. Normally I keep very well with very few symptoms apart from the dreaded fatigue so I think that's why I had a major wobble. I can't believe all the support I have had from one post so will definitely be on here more, Thank you so much.

[4pjx__]

Well, on the bright side, they did get them banded before it became a problem. I think it's when they don't know you have them and you don't get them fixed it can be bad. I think there are quite a few of PBC'ers here who have had this procedure and get on quite well. I don't have varices yet but I am newly diagnosed at stage 3 severe fibrosis. Now I'll be going for 6 month checks. So far, I feel fine. My hepatologist says I'm lucky. A lot of people have this disease for decades and don't know they have it. Then come into the office half dead. I think you're illness is being managed. Much as people with diabetes and cancer have their diseases managed. Not cured. They seem to have issues from time to time

[4pjx__ in reply to 4pjx__]

Oops, sorry. They have issues and then continue on. The same as you will. You as well as a lot of us here wil have issues. I don't think you sound like you are reday to kick off any time soon. We all have to brush ourselves off and get on with it. And make sure you have some fun every day.

Pam

[HelenTM in reply to 4pjx__]

Thanks such sensible advice and you are right they found them in good time.xx

[4pjx__ in reply to HelenTM]

Yes! Sometimes it's really hard to have gratitude for the good things. Especially when not somgood things take us by surprise. I told my husband "God must not be done with me yet". Otherwise I'd be in much worse shape than I am. I don't think God is done with you either. It could have been so much worse.

I hope you stay lucky!

Pam

[Shulsey]

Hello Helen, I feel my story will help you out. Im at stage 4 with the beginning stages of cirrhosis & small esophageal varicies. A year ago this past May I was down for a couple of weeks with the flu. Tried going back you work & realized I was extremely swollen in my feet, hands, & abdomen. I saw my GI for this & he scheduled a ultrasound for a couple days after. I never made it to that appointment because I woke the next morning around 1:30 in the morning belching with such indigestion, or so I thought. The next thing that happened was the scariest thing I've been through with PBC. I started puking straight blood. I was afraid of waking my 8 yr old daughter so I drove myself to the ER while my fiancee stayed home. I didn't realize how dangerous that was at the time. Anyway, I met my sister in law at the ER. The closest hospital wasn't equipped with what I needed done so I was transported to a different hospital & was immediately taken in for a EGD. To my surprise I had varicies that was bleeding from three spots, my GI banded them & also noticed I had a lovely ulcer. I also had to have a two pint blood transfusion & My hemoglobin was at 5. I was in the hospital for close to a week or better. It was a bit difficult to eat or drink due to three banding. I hadn't any clue I had gone into stage 4 with varicies & cirrhosis. My GI said that usually he would place his patient on a beta blocker to help avoid a bleed. This keeps your blood pressure at a good pace. But I was only placed on Lasix because my blood pressure has always been on the lower side, no need for the beta blocker. The Lasix helps keep pressure off of the portal vein that comes from our liver. I've been doing great since that took place. My GI referred me to a amazing heptologist at Indiana University Medical. He had been a godsend for me, I've learned so much more about PBC in the past year from him & his amazing staff. Don't let it hold you down. You can still have as close to a normal life as you can bear but ALWAYS listen to what your body is telling you. You know what you can handle & when it's time to slow things down a bit. Prayers for you🙏.

Stay strong❣️

Shannon

[HelenTM in reply to Shulsey]

Thank you so much Sharon we sound as if we are at the same stage so good to hear your experiences. I haven't spoken to my consultant yet and to be honest I am not sure he is as knowledgeable as yours seems to be. Thank you so much for taking the time to answer it means a lot.xx

[gwillistexas in reply to Shulsey]

That's really alarming. I hope not every PBC patient goes through that. Glad you're doing well.

[janine541]

Hi what do you mean banded. I have peptic ulcers and just take a stomache tablet

[Shulsey in reply to janine541]

The banding is for the varicies. Varicies are like varicose veins that run from you portal vein in the liver & grow up into your esophagus. If you have a lot of pressure or hypertension on your liver the walls of these varicies are so thin that they can rupture & then bleed into your abdomen. Your heptologist or your GI goes in during a EGD to place little rubber bands around the places that are bleeding to stop them. Those spots then heal & the band will eventually fall away. One of the worst experiences I've ever had. But, I try to think of it like Im getting a tune up. It's part of what I need to do at the stage Im in. 🙄😒.

[janine541 in reply to Shulsey]

Oh right im sorry not experiencedthis x

[Sachin1234]

Hi Helen

Does varices has any symptoms.i have hemorrhoids. can that be varcies instead of hemorrhoids?

[HelenTM in reply to Sachin1234]

No expert but don't think so. These were oesophagael Varices

[Sachin1234 in reply to HelenTM]

Thanks