Stress, Trauma and PBC: Did any of you go... - PBC Foundation

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Stress, Trauma and PBC

Ellewoods33
Ellewoods33

Did any of you go through years of stress because of a traumatic event,etc? I am wondering if there is a correlation between Pbc and trauma.

60 Replies
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Thank you for your question.

For all it has never been evidenced or proven statistically, we have had many people with PBC who can go back to a traumatic experience as the start of their PBC.

I shall be as interested as you in the replies to come...

Robert.

Dese
Dese
in reply to PBCRobert

I had really bad food poisoning was in bed for 4 months have to have injections every day and my immune system was so bad. I also lost my mum when I was 20 and ended up with a duodenal ulcer maybe that's where my PBC came from.

I have pbc and have had no trauma

I was having a really hard period of my life when Pbc was diagnosed. At that time I was stressed, angry and felt frustrated with my family. After a routine blood test ALP and GGT were high and ANAs appeared.... then PCB. I keep on thinking that situation I was going through triggered my PCB.

Ps: sorry for my English I'm Spanish

I was constantly worried about a teenage daughter who was being rebellious. I was worried for years about her and not sleeping, plus working a very stressful job. I had no support system to help me deal with her. That's when I'm convinced that period of time was the onset of my PBC.

I had similar experience with my daughter. She doesn't speak even now! Heart breaking.

I can relate😊

Hi Ellewoods33,

From 2008 through 2012 I had major surgery every year! (I know right?) They say surgery causes major stress and shock on the body.

2008: First my appendix burst, they went in laparoscopically but couldn't find my appendix where they should be so they closed me up. The next morning they went back in. They made a huge L-shaped incision and my appendix were pulled over to my left side by my intestines that's where they found them perforated. Anyway, took out my sick appendix, repaired part of my intestine and stapled me up. Recovery and antibiotics.

2009: I developed an incision site hernia on that "upper part" of that appendix surgery. They opened up the same incision and placed in a polypropylene mesh. More staples, more recovery. More antibiotics.

2010: I developed "another" incision site hernia on "the lower" part of that L shaped appendix incision. They placed in another polypropylene mesh...more staples, recovery and antibiotics.

2011: Total Hysterectomy and removal of (are you ready for this) a 4.5 lb. fibroid tumor. 4" bikini line incision, more staples, recovery, and more antibiotics.

Jan. 2012: Apparently, when OBGYN took out the huge fibroid and did the hysterectomy she clipped my lower polypropylene mesh which caused it to curl up around my intestine blocking it. Fever, intestinal blockage, pain. So, both upper and lower meshes had grown into each other .. The same L shaped incision was reopened, "both" meshes were removed and were replaced with "one big one." More staples, recovery and more antibiotics!

Nov. 2012 My gallbladder was removed. Because of so much scar tissue from previous surgeries they "couldn't" take it out laparoscopically. More staples, recovery, and more antibiotics.

It was this last surgery that I developed an infection... They were worried that the infection would spread to my hernia mesh so I had to have major antibiotics. A picc-line was placed in me and I had intravenous antibiotics for 8 weeks. (This was a nightmare. Let's talk about stress shall we? ) Horrible candida, two seromas (fluid) developed requiring 2 drain bags surgically placed on both sides of my stomach. I had those in me for 2 months too.

2013, 2014, 2015 were surgery free. But the stress factor as well as PTSD of hospitals wasn't. Not to mention "financial stress" from year after year of ER visits and surgeries.

Then came Sept. 2016. Acute case of gastritis sent me to a GI who required 15 biopsies of stomach lining and labs, and ultimately my DX of PBC in Oct. 2016, followed by my RA DX, and tendinitis DX this year too.

Had a biopsy of my liver early this year and multiple CT scans, 26 total since 2008.

Let's just say.... My late 40's and most of my 50's have really been a bummer 😕. I'm 58.

The good news is my PBC was found in early stage.

Stella ❤

LindyRich
LindyRich
in reply to Ktltel

My word Stella you have had it tough. Who would ever have guessed what you have been through? That is major stress.

I hope it will get easier for you xx

Ktltel
Ktltel
in reply to LindyRich

LindyRich,

Only when I write it out like that do I really realize how bad it's been. But it makes me wonder about my immune system and this new PBC diagnosis.

Any year that goes by where I don't have to be cut open is a good year. Lol.

Stella ❤👍

LindyRich
LindyRich
in reply to Ktltel

Im not suprised you feel that way. I forgot about operations. I had apendectomy at 14 years, prolapse repair at 24 years (took some getting over) and 2 laperoscopies since. I have read many times that auto immune disease starts in the gut! I often wonder.........

boneytoys
boneytoys
in reply to Ktltel

Incredible story of surviving and enduring and here you Are !

Good luck!

Elanie
Elanie
in reply to Ktltel

Stella, you have faced so much and you are a fighter and an example to us all, but more importantly reminds us that you just need to keep on going no matter what is thrown at you. I hope and pray that the future is brighter for you

Ktltel
Ktltel
in reply to Elanie

Well thank you Elanie,

I can assure you my outlook is bright.👍😊

As the good book says... "Time and unexpected events overtake us all." That's true right? It's been my faith that carries me through.❤

"Health wise", I don't know what tomorrow will bring but, I'm gonna do my best to stay on top of this PBC diagnosis and try to take care of myself. That's not always easy as many of us know. For now though, the plan is to do all I can, while I can.

Today is a good day. 😊

Stella ❤

gwillistexas
gwillistexas
in reply to Ktltel

😊

Rockie
Rockie
in reply to Ktltel

I can also relate

Sachin1234
Sachin1234
in reply to Ktltel

Do you have anything left on your body 😁.. goodthinh you are alive and functional.. till 3 years ago I hardly ever went to dr after pbc every months I have to make appointment to all different kinds of drs. Sucks !

SheSheila
SheSheila
in reply to Ktltel

Your journey sounds so close to mine. My journey started in 1996, with Endometriosis surgery that ended up with a complete hysterectomy in 1997. I was 38, so hormones which led to the 3rd stage of zero stage breast cancer 18 months later, which spread at age 42 to life threatening stage 3C. So mastectomy, port placement, 8 months of chemo, a divorce that was final as my 3rd chemo drug dropped, trial drug Herceptin that almost killed me twice before I said enough. 6 weeks of radiation and a year and a half of my life later, I thought I was done. No way, I have had 29 surgeries since my mastectomy on Sept. 25, 2001, through Sept. 20, 2016. Repairing my body from cancer treatment. I did make the mistake of having reconstruction done. Don't ever do, you can never get back what you lost. Move on instead. Needless to say I have had countless medications flow through my body. I have worked hard to go from 14 medications down to 3, to give my liver a break. Well a little to late. I will keep going forward, but frankly, I'm tired. Much love to you ALL.

Ktltel
Ktltel
in reply to SheSheila

Awe SheSheila,

You have had tremendous stress! I bet you're tired. It's exhausting and expensive trying to stay relatively healthy. We all keep trying. Can't give up. Do you have PBC then? You've been through so much. How are you feeling today?

Stella ❤

I've been stressed for a year. Makes me wonder. Nothing traumatic just stress. Interesting question👍

I am sure I have had the maximum amount of stress my body can handle. I was dx 3 weeks ago. My oldest son passed away suddenly in his sleep in 2000. Both of my parents in the next 2 years. My daughter has been a nightmare to raise and has cut off all contact with me. Which is preferable to the vicious name calling and her expectations of me providing for her . Life has been difficult. So I realize that this is not the worse thing that has happened. I can live with it. And leave the pain of the past. In the past. I realize how my stress has affected my health. I choose to let it go.

I had stress in childbirth. Major flashbacks for 15 years. Flareup in 2015/16 after traumatic house move, followed shortly after by death of my younger brother at age 56 and coping with elderly grieving parents.

Ktltel
Ktltel
in reply to LindyRich

Prayers for us all LindyRich. ❤😚

Stress may of caused stones perhaps which have lead to a blockage that has then gone on to damage to bile ducts, I know when i first got dx with gall stones I was in a lot of pain, similar to what I still get (now I'm minus by gall bladder) but at the time I had lost my brother who was very young at the time and then lost 4 babies through miscarriage so does make you wonder x

Hidden
Hidden

I had many years of stress spanning over 20 years, a final relationship breakdown when I was 46, which was 10 years exactly before being diagnosed with PBC at 56, I also read somewhere once you get a diagnosis you've probably had it 10 years already so maybe there's something in this theory. I always thought it was having the tonsillectomy I am also a general anxiety sufferer. Iam also a general anxiety sufferer.

I went through one year of traumatic stress. But I was also exposed to radon gas as a youngster, my sister had hodgkins disease and my mum had scleroderma. Wonder if the radon gas might have anything to do with it?

Hi Ellewoods33

Yes I do believe there is a link. I lost my husband at 39. A year later I was diagnosed with pbc. I think the stress has maybe triggered the condition?

100% believe that stress and trauma switches on all types of Auto Immune disorders. Currently reading Bessel Van Der Kolk's book, " The Body Keeps The Score". All about how the body transforms trauma through mental and physical health. I'm interested as a therapist and also someone who was diagnosed 3 years ago. Retiring from therapy next month but continue to research and read. Brain Working Recursive Therapy (level 3) can help with auto immune disorders. Have a look at their web site and I'm sure that Terence Watts would be more than happy to discuss more with the Foundation.

Wow you have all had so much to deal with. For me I moved 9 times in 10 years. Got divorced. Met a wonderful chap with two teenagers who had lost their mother to MS quite a shock as I had not had children because of a difficult first marriage. Eventally we all settled happily. I had a responsible job dealing with people which could be stressful at times. I internalised my worries as I felt my second husband had had enough worries. Once PBC had been diagnosed I got into a good routine however in 2011my mother came to live with us my sisters were not supportive of this wonderful lady who now had dementia and when she died in 2014 with all the stress and upset surrounding this event my itch went ballistic.

I can well see from all the answers above how stress could play such a huge role as a trigger. Great question.

Although now retired, I used to teach psychology at Masters level including psychoneuroimmunology. There is a direct link between physiological responses to chronic stress and the immune system, suppressing its effectiveness, rendering a person more vulnerable to a range of health problems. Research also suggests that the immune system in some people might respond to this by overreacting and some auto immune disorder presenting. It's hard to prove direct cause and effect though. Many stressed out people don't go on to experience health issues. The implications are that those who do, might have some biological predisposition for an autoimmune disorder, hence it's part innate, part environment. It would be interesting to do some research with members to see what proportion of us meet the criteria. For the record, I would too.

I had just had my baby when I was diagnosed, but fairly uneventful before then!

I was under an enormous amount if stress at work 5 years ago, plus dealing with deteriorating knees. I had 2 knee replacements in 2013, on top of financial strain due to the surgeries. I was diagnosed with PBC a few years later after suffering with fatigue & itch for about a year.

My husband and I have seen a therapist for almost 2decades off and on, she believes and would love to see a study done on this. Seems trauma from (especially unresolved) the past does seem to affect immune system, she also thinks past generations influence it. I also like Van Derek Kolks book. Almost simplistic in the cause and effect thinking. I know from my husbands family all this seems 100% true. And I just witnessed what stress did to my husbands pbc this weekend. Hard to ignore.

Fascinating topic! It had never occurred to me before, but I certainly suffered stress and heartache for several years before my diagnosis of PBC. Would love to see some proper research done in this area.

Wow, I have had a ton of stressful events starting back at 19 having my gallbladder removed. Right after I had moved in with a guy who had been one of my best friends all through high school. He turned out to be extremely controlling & very abusive ( mentally, physically, emotionally). I got out of that relationship & went right into another one which I ended up pregnant at 24. The pregnancy was stressful, but Im blessed to have a young woman who's now my best friend. Battled drug addiction for many years but somehow managed to raise my daughter the best I could with what I had. Was misdiagnosed with hepatitis C at 26. Went through the awful treatment just to find out later that was a incorrect diagnosis. Got married at 27, which ended in divorce just a year & a half later. I had to deal with my daughter's narcissistic crazy stepmother for 13 years. She was unbelievable, always went out of her way to make me the bad mom. Got pregnant again (10 yrs after the first daughter). He was amazing, until halfway through the pregnancy he turned into a very angry drunk. Haven't seen him in close to two years, which is a blessing, honestly. Went through cosmetology, which the narcissistic stepmother thought it would be a grand idea to go to the same school at the same time. That's when I got my PBC diagnosis in 2012. Geezzz, now that I have read over this, what a crazy life I've had. Along with everyone else on here. What doesn't kill us makes us stronger right!?!?

Stay strong❣️

Shannon

I too have had my share of tradegy and trauma A car crash when I was 8 months pregnant My husband took his own life My brother drowned they were both too young These life changes must do something to you even if you are a strong and well person I eventually had a complete breakdown which I was hospitalised for but I am convinced my pbc came about after a really bad bout of food poisioning My stress is still going on my son who is only 47 recently had a heart attack and so it goes on but every day I still count my blessings and thank the Lord for another day that is all we can do Take care all xx

Ellewoods33,

Yes stress before diagnosed and after. Anxiety depression and anti depressants. Daily yoga reduced stress levels but I may just be a stress type a person. I quit Zoloft after 10 years once I got on daily yoga routine.

Jlruggie

Having been diagnosed with PBC by a gastroenterologist I subsequently requested a transfer to a different hospital in order to see a particular hepatologist. He helped me clarify how long I had had my symptoms and asked about any recent illness or particularly stressful times, either physically or emotionally, that I was aware of. We concluded that the onset of my PBC most likely coincided with an extremely difficult time I had experienced in my previous employment, 4 years prior to diagnosis.

As others have said I too believe that stress or trauma (particularly unresolved early experiences) affects our physiology, including our immune system. I now work as a biodynamic craniosacral therapist with a particular interest in trauma. Thank you for posing the question Ellewoods33 and thank you Robert for expressing the interest of the Foundation in this subject.

Cx

AFTER READING ALL YOUR REPLIES I REALIZE THAT I TO HAVE HAD A LOT OF STRESS. BEING A PEDIATRICIAN IS STRESSFUL, BUT WORKING EVERY DAY 24-7 ON CALL IS WORSE. 4 YEARS AGO I WAS DIAGNOSED WITH HYPERTENSION, I WAS ONLY 37 YEARS OLD, WHICH WAS VERY DIFICULT TO CONTROL UNTILL I LEFT THE HOSPITAL I WORKED FOR 12 YEAR. TWO YEARS AGO I OPENED MY OWN PRACTICE AND MY PRESURE GOT BETTER. A YEAR AGO MY DAD HAD A HEART ATTACK AND I BEING THE OLDEST HAD ALL THE PRESURE. MY DAD IS GREAT THANK GOD. BUT I DO AGREE THAT STRESS ACTUALLY DOES AFFECT US IN ONE WAY OR THE OTHER. BUT THE MOST STRESSFUL EVENT HAS BEEN BEING DIAGNOSIDE WITH PBC AND NOT KNOWING WHAT COULD HAPPEN TO ME. BUT ONCE AGAIN I AM SO GRATEFUL I FOUND THIS COMMUNITY THAT IS ALWAYS THERE TO HELP ME AND MAKE ME FEEL BETTER.

NOT SO FLUNT WITH MY ENGLISH, I AM FROM MEXICO. SORRY.

Hope you are doing well

i pray for all of us each day.

Really interesting. I often wondered if stress is not the cause of this unknown disease called PBC. In my community it is rare

Are you just wondering or you have read as well? What kind of trauma you refer too? In interested to listen your stories

I might be your poster child for stress. I have not had a year without major stress. I have experienced major physical(surgeries, paracite infections, etc) and major psychological stress -25 years in war or near war zones in multi countries. As a combat medic I saw a lot of trauma. I also have not only experienced multiple deaths of loved ones, but have been their primary care taker through the process of their death. I have been in EMDR treatment every week for 10yrs for complex PTSD. The interesting thing is I thought I was handling things well, only to discover I had DID and that is how I had coped all these years. My psyc doc and therapist believed if I could not get a break and distress I would get very sick. My doc actually told me I would die. She said "and I don't mean sometime down the road. I mean in the next 12 months".

I had a positive AMA ten years prior to being diagnosed with PBC. I had come back to the US for vacation from living in Kuwait for five years and come down with awful pain in all my joints, thus the AMA test. Was told I would develop some sort of auto-immune but it was too early to tell which one. I went back to Kuwait for another five years. Returned to the US and five years later had PBC per LFTs and biopsy.

So any of the following factors could be culprit - mental/emotional stress, environmental stressors such as the oil fires and the biological sprays we were exposed to, three major surgeries, or being infected with strongyloids (worms) in Laos.

If I could think of one thing that happened prior to PBC diagnosis, I would suspect a medication (saphris -sp?). I had to run LFTs on it as liver damage is one of the side effects and it was one of the routine lab checks that the PBC was picked up and the medication discontinued.

Robert, I hope some of this helps. Fell free to contact me if you need more detail.

Kathy

I had immense stress 2 years prior to my diagnosis. My Dad had passed away after being on life support for almost 5 months. I had a drug addict brother who fell and cracked his skull in 25 places, leading him into a craniectomy, where they removed the top portion of his skull and placed it in his abdomen for one full year due to the swelling of his brain. (Yes, you read that correctly.) I never knew this was even possible until it happened to him. At the same time, my spouse lost his job of 25 years and I was working a horrible, stressful job carrying the load of all expenses. I am happy to say, I am no longer at that job and just left there last year. During this time in my life, I ended up in E.R many times for panic attacks, only to be given xanax and reassured it wasn't a stroke or heart attack. I am 1000% convinced that all the stress I had brought this on.

I didn't have any stress or trauma when I was diagnosed I wasn't even sick when I was diagnosed. After diagnosed I was stressed and traumatized..

stress and trauma makes our immune systems weak for sure and that can trigger autoimmune diseases as well !!

I read some where that virus trigger pbc too! Very interesting!

Q8Cooper
Q8Cooper
in reply to Sachin1234

LOL "After diagnosed I was stressed and traumatized" Not funny, but the way you phrased it came out that way. The one thing I noticed is how distressed every newly diagnosed person is. I think if our doc's did a better job at educating us (even if it means they have to do a little research themselves), we would all handle the news better.

Sachin1234
Sachin1234
in reply to Q8Cooper

That's why I like university drs where they can treat and research at a same time!

That's great if you live in a city with a university. We have University of Texas Health Science Center here. Lots of research. But I don't go there.

When I was diagnosed I had gone through a period of intense stress, but I think my PBC started 10 years earlier when I was pregnant with my second child. I was very sick throughout the pregnancy but it wasn't followed up since I got better when my son was born. I have been very lucky in my life and I've not experienced an awful lot of stress or any serious trauma. So no, in my case I cannot see a trauma or stress as the cause of PBC, however having it is stressful. Not being able to trust your body to function is stressful. Not having energy is stressful, being sick is stressful. I have had a number of good months when I have been able to live my life but now I'm experiencing a lot of painful symptoms and that is stressful! There is no support system for people who live with chronic diseases and that is stressful, too.

My stress came with PBC not the other way around (unless pregnancy in itself would be stress and yes the body is strained but it was and is a wanted child, much loved by everyone so no pregnancy is not always a stress). I just wish there were more straightforward advice on how to deal with all the symptoms and disappointments the disease brings. And I wish I could be guaranteed I'd feel better again.

I'm so impressed with everything you've all survived, you're strong survivors. The one good thing that can be said about PBC is that we will survive. It is quality of life we have to fight for and in my case, right now, it is a daily struggle.

Keep fighting,

J

gwillistexas
gwillistexas
in reply to Jowen

It is very stressful never knowing how you will feel. I feel great in the mornings but early afternoon i dream of curling up & sleeping. This disease is one of those "if you don't have it, no way can you understand the feelings it brings". It's depressing to say the least.

Sachin1234
Sachin1234
in reply to Jowen

Same here with me.. pbc brought my stress too! Before pbc I was a happy jolly guy now I'm stress distress and sometime depress 😁..

I don't know wether stress the reason we have pbc but one thing I can agree on is it might triggers pbc which are already hidden in our body!!

As swinstan says there is mounting evidence of the long term adverse effects of early life stressors of all types. Google reveals many recent papers on the subject of which the following (*) are examples in case anyone wants to take it further:

*Childhood trauma & adulthood inflammation; a meta-analysis of peripheral C-reactive protein, interleukin-6 & tumour necrosis factor-α 2016 Baumeister

"Studies in the recent decade have implicated the innate immune system in the relationship between childhood trauma and adulthood disease."

* Resilience Resources Moderate the Association of Adverse Childhood Experiences (ACE) with Adulthood Inflammation ... Consistent with findings indicating that exposure to ACE is associated with a pro- inflammatory phenotype [5], participants that experienced several ACE ...

*Childhood Victimization and Inflammation in Young Adulthood: A Genetically Sensitive Cohort Study 2017 ... Because many disorders linked to child victimization (eg, depression, post-traumatic stress disorder ... after accounting for other potential confounders in childhood and adulthood (Takizawa et ... analysis of 25 studies showed that different types ...

*Cytokine levels in major depression are related to childhood trauma but NOT to recent stressors 2016 ... However, in the subgroup of traumatized MDD patients, higher severity of childhood sexual ... childhood, past 12 months, past month), different severities (eg traumatic events vs. ... Additionally, we aim to explore whether different subtypes of childhood trauma contribute differentially ...

*Hidden wounds? Inflammatory links between childhood trauma and psychopathology .... community risk factors are all associated with increased risk of childhood traumas such as ... risk factors represent alternative explanations for the link between childhood trauma and later

*Childhood maltreatment and inflammatory markers: a systematic review regarding the association between CM (Childhood Mistretment) and inflammatory markers in adulthood. ...

*Association between childhood trauma and accelerated telomere erosion in adulthood: A meta-analytic study 2017 ... Considering that childhood trauma influence a variety of age-related diseases in later ... promising biological marker to examine the association between childhood traumas and accelerated ... accelerated telomere erosion in adulthood individuals with early traumatic exposures has ...

NB - life length has been related to how well the telomeres persist.

* Inflammation and neuronal plasticity: a link between childhood trauma and depression pathogenesis... stressful events can cause, possibly through epigenetic changes that persist over time, up to adulthood ... we will discuss the role of epigenetics in inducing alterations in inflammation-immune systems

*Childhood and later life stressors and increased inflammatory gene expression at older ages ... Furthermore, examination of interaction effects showed that childhood trauma exacerbated the influence of low SES in adulthood on elevated levels of inflammatory gene expression ... Overall our study suggests that traumas experienced during childhood may alter ...

Think my stress came in several periods starting as a baby in World War II, and being bombed next door, the roof fell in and fire was spreading. My mother cradled me (2+years) in her arms as she bumped down the stairs on her bottom in the dust and dark. I suddenly let out a shriek - we still don't know why. She stopped and put out a hand to comfort me. As she did so the back of her hand hit a great shard of glass in the rubble which would have impaled her in the face if she had continued to bump down the next stair. She eventually cleared a way forward as I became covered with her blood. Some things you learn to forget, but I had severe recurrent migraine in the late teens - another indicator of stress - and also other stress periods as the decades rolled by. Now its PBC, but latest bloods show lower ALP and AAT - maybe the diet is working?

Divorce 2 years before diagnosis

Sachin1234
Sachin1234
in reply to Cher29

😔

I have often wondered if it was my body's response to the trauma of losing my Dad, who I was very close to. I was diagnosed a few years later and had started to suffer from inflammation.

So many people have horrific stress and trauma in their lives but PBC is rare so that doesn't really add up as a cause? Having said that though, there was an epidemiological research into PBC just completed here in Australia and a there were some questions on past traumas. However most of the questions were around sun exposure and Vit D suggesting that this is more televant with regards to triggers??

What were the findings?

Lizzy71
Lizzy71
in reply to Ellewoods33

Not sure yet. The results of the study are to be published next year. Will post them when they come out.

Yes lots of stress in my life...

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