First appointment tomorrow

[IAmTheGlue]

Hello all,

I'm brand new here and hoping for some reassurance. I am a 40 year old mother of 5 (17, 15, 13,7, & 9 weeks). I have not yet seen my GI specialist. I have my first appointment with her tomorrow. The problems I'm having began during pregnancy and I think my OBGYN dropped the ball. My urine was Brown, I'm jaundiced (Bil 12 at last draw), itching all over like crazy, elevated liver enzymes... He just thought all this was normal. When I got very sick at the end, he admitted me to the hospital, started the lung maturing shots for the baby and we had him the next week.

He expected all of this would resolve itself by my 6 week check up, but no such luck. My enzymes had raised even more but my Bil was down to 9. He made me an appointment to see a GI dr at the end of Sept. I made an appointment with a new Dr at IU last Thursday and he said no we are not waiting a month to be seen. So, Friday they say they put a referral in to see a GI dr ASAP.

Tuesday they call and say that he suspects a diagnosis of PBC and I have an appointment to be seen tomorrow. I can see my lab results online and I suspected the same, read the horror stories and medical journals about life expectancy on my phone, brand new baby who definitely needs his mom in my lap... ugh. Scary stuff.

Then I found this site and am a little more reassured... But still scared to death.

Immediately when leaving my Dr a week ago, I started following a vegan liver diet I found online. Basically, no animal products, no refined carbs, no sugar/artificial sweeteners.. so super healthy. I'm drinking only water except 2 cups of coffee a day (gross) because I read coffee protects the liver. No alcohol.

Anyway, I'm super scared of what she's going to say tomorrow. My husband is totally in the belief that this is new, cannot be advanced, but was aggravated from the pregnancy and my body not being able to keep up with the added stress of the pregnancy.

But overall, I feel okay. I walk 5 miles a day with my baby. I am tired but I sleep in a recliner beside my baby's crib, and he still wakes up every 2 hours to eat... I'm tired because I get 4-5 hours of sleep I believe.

Anyway, nice to meet you all and I'm hoping things go well tomorrow.

[Shulsey]

Sounds to me that PBC is the culprit. I think we spoke briefly on one of my posts. Try not to stress because it isn't good for any of us. Plus your new baby will know something isn't right with mommy. Im sure you already know all of this, you have 5 🤗 WOW. To me,you sound like super woman!!! You'll soon find out how to live with this day by day. People from all over the world gather on this site. It's pretty amazing. Also, you should know, PBC is a slow progressive autoimmune disease that effects the bile ducts of our liver. Once diagnosed & placed on treatment you can live a fairly normal life with tons of grandchildren eventually😉. You'll also find that one of the main symptoms all of us struggle with is the chronic fatigue. So not only are you trying to bounce back from having a new baby, this could be some of the problem as well. Most of us on here, after diagnoses, begin to realize that our symptoms started long before we were actually diagnosed. Best of luck & welcome🙂

Stay strong❣️

Shannon

[Lookforward]

Hi there

Congratulations on becoming parents again .. what a joy and sounds like little one is doing just fine ..

Of course you are worried. That's a normal response . We are were and are from time to time but you know what , the sky didn't fall or the earth didn't stop revolving . I wake up everyday and apart from a label of pbc and meds, life is pretty much the same - domesticity and work continue with some alterations ..

You've made 5 children , so already I can tell that you are a very resourceful resilient woman.

the worry sticks for a bit ..

then the fighting spirit kicks in and you look outwards and forwards and become proactive ..

you will learn a lot and apply that knowledge to being the healthiest version of you ..

this pbc is different for everyone

you are going to be around for a very long time and that's a fact ..

one day at a time for now

Share information with your family . They will want to help you

Difficult as it is , maybe with friends / family, find some rest time .. your body will thank you for any chance it gets to lie down flat and it will work better for you. even 1/2 an hour is helpful

you will learn how to manage your energy , planning and prioritising where you want to spend that resource .. yours will b heavily invested in your family so a family approach will help ..

take it easy with the diet thing .. follow your instincts .. you need good fats in your diet too

oily fish , almonds , egg yolks ..

I like walking too and joined s woman's walking group .. fresh air and sunshine is medicinal and good for the mind ..

We will all be here for you so you can update us on how you are getting on ..

The calm will come in a little while and you will soon be there for others going through this early stage of diagnosis..

Thinking of you 😊

[gwillistexas]

God bless you! Our prayers are with you.

[DPcpa]

I too was diagnosed with a new baby. I have no symptoms and am stable at stage 0/1 on ursodial with a lively soon to be 21 month old. I found focusing on my sweet baby girl has kept me going and I am going to embrace each moment I get, 😁

[GrittyReads]

Sorry for this shock to the system, especially as you obviously have so much else going on. However, PBC is nowhere near as scary as it used to be, and once you have been checked on started on meds, I'm sure all will settle down. Talk to the people at the 'PBC Foundation' who host this site. Link at top of page, with email and phone contact details, but their website is a mine of wonderful info - and if you join (it's free) you get even more. Most of the stuff online is out-of-date and overly scary, so ignore it for now. Most people with PBC live to a normal ripe old age and die of something else, so stop fretting!!

However, I would be wary of the extreme diet until you have had the best expert advice. PBC can cause certain specific vitamin and mineral losses and you might inadvertently be making things worse. Okay, cut out processed stuff and bad fats etc. and buy good healthy food, but I would be wary of sudden switches of any kind, right now, especially vegan.

Best you can do as well as all round healthy diet, is lots of gentle exercise and doing lots of stuff that you love and which makes you happy - have fun, treat and coddle yourself. Stress is the worst for all autoimmune diseases, so do things that de-stress.

NB Make sure medics check you for all other autoimmune conditions (they can travel in packs !!!) , as well as all other liver-related issues.

Hope this helps. Take care and enjoy you new baby!!

[IAmTheGlue]

Thank you all for your reply and support. ❤ I will absolutely ask the doctor this morning about any diet restrictions so I'm not actually hurting myself. Thank you for letting me know it doesn't have to be so restrictive. I did read about that diet online so, it is probably just way off.

I'm headed to the doctor soon and I'll let you all know what she says. I'm hoping my baby sleep through the appointment, but my husband and I really have no one but each other and he is in the middle of a big project at work so he could not take off for the appointment.

Once again, thank you all. ❤

[Belliver in reply to IAmTheGlue]

Hi Iamtheglue; my advice is to ask your GI doctor to refer you to a Hepatologist at a teaching/transplant center--don't worry about the transplant center name.Hepotolgist is a GI specialist with extra (at least 1 year) study just focusing on the liver. My experience is the GI doctor more than happy to work in conjunction with Hepatologist. Even the Hepatologist sub specialize in PBC disease, it is so worth it to consult with one of them, even if you have to travel. Best wishes & remember you not alone!

[Chrissy64 in reply to IAmTheGlue]

The first thing my Doctor told me was to stay off the internet. He said use the Mayo Clinic website or the Liver Foundation website. I too was terrified after researching but most of that info is outdated so try not to worry so much. Everton is different but mostly they don't want you to eliminate any food group just make healthy choices.

[IAmTheGlue]

Hello all,

I saw the GI dr today. She diagnosed PBC and is running some more tests to insure it is causing all the issues and therapy is not a blockage also. She ordered a liver biopsy (Sept 12th) and MRI / MRCP(Sept 6th).

She said do not read stuff online about it. Do not follow any diets I found online, no dietary restrictions. She did say not to color my hair and to avoid chemicals.

She prescribed Urso and Atarax(which was like a lovely blanket of calm about 20 minutes after I took it) in the meantime. She said if it ends up being all caused my PBC she will prescribe a couple very strong medications that I'll be taking long term. I did not think to ask what they were.

Anyway, that is where we are today. Once again, thanks for the support. And you all were spot on about the diet. 😀

[gwillistexas in reply to IAmTheGlue]

Thanks for the info. Was thinking of coloring hair but guess not, lol! I did research "liver friendly foods" today. Found a wealth of info. Check it out.

[Shulsey in reply to gwillistexas]

There was a discussion of coloring hair with PBC on this site. If it was truly a problem, all kinds of women would be diagnosed with PBC & it wouldn't be such a rare disease. I think the statistics are something like 1 out of every 3-4000 women are diagnosed PBC, please correct me if those numbers aren't right. I can assure you, hair color is not a problem or "trigger" for PBC. I color my hair, along with many other woman I've known, Im also a licensed stylist. But crazy as it is, Im the only one with PBC. Shoot, my mother has been coloring her hair many many more years than I & she is very healthy. People must live their life, hair color or not 😊.

[gwillistexas in reply to Shulsey]

Hello. I think what she meant was dr advised to not color because of PBC & chemicals in the color. I may give it a whirl this weekend 😀.

[Shulsey in reply to gwillistexas]

I wouldn't think that it would be any more harmful than the actual air we breath walking outside. If you think about all the chemicals around us. Im sorry if Im being wrong, but I feel that's way over the top. I still color my hair & I know that there are plenty other PBC'ers who still do as well. I apologize if I seem to be coming off as rude, truly not meaning it that way. But, PBC or not, we still need to live life. Plus, Im sure there are more harmful things that we need to worry over😉. That's really the first time I've ever heard a GI tell someone that.

[gwillistexas in reply to Shulsey]

You are do right. It's unhealthy to be in open air anymore. I don't think you came across as rude. I suppose different drs have different thoughts. I don't have an appt with mine until November but I may ask his thoughts. (But I may be blonde by then)☺️

[IAmTheGlue in reply to Shulsey]

My husband said this, too. You still have to live your life, or what is the point of any of this. 😊

[Ohio82 in reply to Shulsey]

Chemicals are the issues with coloring hair - if you have a compromised liver, it can do more damage.

[IAmTheGlue]

I was not under the impression she meant to never color my hair again. Her actual words were "hold off on that. Avoid chemicals of any kind right now while we get this sorted out. " It was something like that. I recorded the appointment in case I couldn't remember anything later so I might go back and listen to it in case I misheard her.

I think she might believe there are multiple things going on with me. I'm not sure. I still have a specific pain about the size of my fingertip in the upper right quadrant. I'm not sure if that is common to PBC.

I was a licensed cosmetologist, too. 😊 I let my license go years ago, though, when I started having kids. But yes, sooner or later I'm coloring my hair. It is driving me crazy now. It is odd because the doctor in the hospital also asked about coloring my hair.

It does make me feel better though you guys color your hair and get along fine. 😊

[gwillistexas in reply to IAmTheGlue]

G'morning. I also have the pain in upper quadrant. Seems to be part of PBC. Although, I may ache a few days then it goes away, comes back but doesn't stay. Strange stuff.

[IAmTheGlue in reply to gwillistexas]

Okay, thank you for letting me know! Mine is like that, too. It comes and goes, but is always in the same spot

[gwillistexas in reply to IAmTheGlue]

Yes, always😔. Have a nice day!😎

[IAmTheGlue in reply to gwillistexas]

You too! ☺

[gwillistexas in reply to IAmTheGlue]

When there's no pain, I like to think my liver is happy, lol!

[gwillistexas in reply to IAmTheGlue]

I did research safety of hair dyes & PBC. It is advised against due to certain chemicals. 😀

[Shulsey in reply to gwillistexas]

The only thing I've been able to find on hair color & PBC is a study that was done almost 10 years ago. I still say the air we breath is worse. I live in farm country & all of the pesticides & chemicals that are dropped by plane over the crops I have dealt with my entire life. Im surrounded by soybean fields & corn crops on all four sides of my house. None of it could be good. I pray someone will someday figure out what exactly triggers this PBC 🤔

[gwillistexas in reply to Shulsey]

Yes, and why it strikes women more than men. 🙁

[Shulsey in reply to gwillistexas]

Most definitely!!!

[Ohio82 in reply to Shulsey]

Hair color doesn't trigger PBC, it's the chemicals that you are adding to your compromised liver that is the issue once you have PBC.

[Shulsey in reply to Ohio82]

Yes, I understand that. All Im saying is hair color chemicals along with everything else we breath in daily cannot be good. It's just as bad as the air in general. These days, everything around us is toxic. With my case, I feel that my liver is already at cirrhosis stage, there's no turning that around. I'll continue to color my hair & living my life, not inside is a bubble. 🤗. And, it would be awesome if someone, someday, can figure out what triggers it. So in the future, for my girls for example, there's more of a chance to find a cure or prevent it being triggered.

[Ohio82 in reply to Shulsey]

True it would be great to find the trigger or a cure PBC. I agree we are exposed to a lot of chemicals we do not even realize.

[gwillistexas in reply to Shulsey]

We should all live each day to its fullest, regardless of the stage we're in.