Possibility of a link...PBC, Anemia, Adenocarcinoma

[brjl]

When I last checked in I was on a new course of Fenofibrate along with Ursadiol. The Fenofibrate continued to keep my numbers in a good range with no apparent side effects. I wanted to let you know about another serious health issue I am dealing with. I was diagnosed with PBC in 2012. At the same time I was diagnosed severe anemia. I had 5 years of transfusions and iron infusions. I started to get terrible stomach issues. I had more tests than I can name to find the source of my blood loss, with no answers. In 2017 I needed emergency surgery for a blockage. It turned out that I had a slow growing adenocarcinoma in my small intestine. This is very rare and very hard to detect! It was removed. I did not have chemo and have been followed for several years. This past August it reoccured and spread. I am now on chemo and fighting. My husband was doing research and found a study that linked bile to adenonocarcinomas. Has anyone else with PBC had unexplained anemia or an adenocarcinoma?

[periwinkle88]

I haven't had those issues, but thank you for bringing awareness about the potential. I'm sorry you're having to fight such a battle. Take care and let us know how you're doing.

[usernameblah in reply to periwinkle88]

I have had pbc for 4 years, I am having tests for haemolytic anaemia, something is gobbling my red blood cells.I also have fluid on my lung and extreme pleuritic pain which could be liver related, who would know.

I think whatever medical problems that pop up seem to get blamed on pbc, time will tell

I hope you get some relief from your problems

[vicary]

Hi brjl, I was diagnosed with PBC 2010 & have had problems with iron deficiency on & off for over 10 yrs , I had a transplant in Nov 2019 , since my transplant my iron issues have worsened , I have had several courses of ferrous sulphate which bring my levels back up whilst taking them but once the course has finished they drop radically so I get severe anaemia, I am now awaiting my 1st infusion also a colonoscopy & a gastroscopy . They are also going to test me for sickle cell as this is related to PBC also , for some reason my body isn't absorbing iron so they are hoping these tests will reveal why . My tests are on hold at present due to bring on national lock down in the UK. With regards to any side effects I'm having apart from the obvious extreme tiredness the only other thing I have is when I eat or drink the bubbling in my stomach is very loud & can be heard by anyone around me , did you have this ?

I am so sorry to hear you are fighting such a battle PBC is such a dreadful disease & more & more issues are coming to light related to this condition , I also have sjogrens syndrome & have boarder lined under active thyroid a few time's both being autoimmune problems, but as yet my anaemia remains a mystery .

This is a very difficult time for you , keep strong , keep fighting , you are in my thoughts , please let me know how yr doing .

Take care & keep safe xx

[brjl in reply to vicary]

Thanks so much for your kind thoughts during this difficult time for all of us. You have certainly been fighting a huge battle. It is so frustrating not to know what is happening with our bodies. Just checking, have you been positive for blood in your stool? I always was, but never saw blood. I had a "slow leak". Yes, I have had the loudest bubbling noises in my intestines. It sounded like a thunderstorm. I hope you find answers. Stay safe and keep me posted!

[vicary in reply to brjl]

They didn't find any in my stool test & I never see any , but aren't ruling it out only had one test for that so far ! Wow you have worded that perfect mine too sounds like a thunderstorm, I find myself telling it to shut up 😂!

It has been a huge battle things didn't go to smoothly but tbh I was so ill , in pain & sleep deprived for 2 yrs pre -op I think I would've endured anything to make it stop ! we all battle in different ways with different things , but we are all warriors in this battle together , you are never alone my fellow warrior , there is always support here , I will keep you posted , you too please .

ps where do you live in the world ?

& thankyou for the information you have provided it really helps .

[brjl in reply to vicary]

I live in upstate NY, USA. You are in the UK? It's so nice to find comfort across the globe.

[vicary in reply to brjl]

Yes I'm in the UK , I don't know about you but when I was diagnosed I'd never heard of PBC & my GPS knew very little about it , but I was put under a PBC specialist straight away & one of my GPS took it apon herself to do as much research as she could & has basically been on my journey with me . I am under a hospital called St James based in Leeds , Yorkshire UK this hospital is amazing & has some of the best liver surgeons across the world , the support & care we get is outstanding & I was given every treatment available to try help with PBC , UVB , plasma exchange , Nasel Billiary drain etc unfortunately I only got some relief from the drain , I suffered extremly bad with extreme pirituis, my mental state suffered badly too but I had help with that also , for me they most defiantly saved my life & they will continue to look after me for the rest of my life too I am truly blessed to live where I do . I hope you are being well looked after , always speak up for yr self you know yr body better than anyone !It really helps to share yr experiences with people across the globe to talk to people who understand is worth it's weight in gold !

I am truly grateful to all who have supported & still support me on my journey & I am always here to support others anytime.

Take care , yr always in my thoughts ❤

[doberanne]

YES I have had recurring bouts of it, I was rushed in during coved shut down for 2 bloods and 1 iron. I have had PBC diagnosis since 2002, but now realise I had it many years before that. I go to Bristol Royal and currently have severe itching.

[vicary in reply to doberanne]

My heart really goes out to you with regards to the itching , it nearly sent me over the edge many times !!! when you tell people that yr itching they just can't comprehend it , well it's just an itch isn't it ? NO this is itching like no other , it felt like I had spiders under my skin ! you don't sleep , you rip yr skin off , it turns to leather , bruises beyond belief , scabs , lumps & defiantly no quality of life ! Don't be fobbed off with this itch , you tell them how it is & get every bit of help you can .

I wish you well & hope they give you something that works for you , unfortunately for me nothing did , the only relief I got was a nasel billiary drain , it's extreme but it saved my life until my transplant .

Take care & keep safe x

[PatriciaHebrides]

Hi brjl,

I was diagnosed with PBC 2010, also have asthma/COPD, underactive thyroid, wheat /gluten intolerance but no iron deficiency or Anaemia.

Early this year I was diagnosed with a small stage adenocarcinoma in my left lung, treated with SABR. I was lucky this was discovered during a routine consultation with my respiratory consultant and treatment started just before the Covid lockdown started. I had a CT scan 3 months later and those results were good.

I still have breathing problems of course and have been told I have mild Bronchiectaasis. Interestingly one of the possible causes is Immunodeficiency, also mentioned (amongst many others) are that Rheumatoid arthritis, Inflammatory bowel disease and Sjögren’s might be associated.

[vicary in reply to PatriciaHebrides]

Sjogrens is defiantly linked to PBC , I too have it , it has settled a bit since my transplant, pre op I had recurring conjunctivitis, ulcers & thrush in my mouth , it also causes deteriation of yr teeth due to lack of saliva , so it adds greatly to my dental bill ! Hope yr coping in this stressful time , stay safe x

[brjl]

FYI.....I last wrote 11 months ago describing my diagnosis of small bowel cancer and wondering if anyone else had colon cancer in addition to PBC. I am still here after a year of Chemo, that will continue until it stops working. My cancer has not progressed and I am stable. I continue to take Ursodial and Tricor for PBC, but it is very interesting to note that my liver functions have been completely normal for the past several months! I am not recommending chemotherapy to treat PBC. The adverse side effects make life difficult. However, my ALK/Phos has been in the 90"s. My gastroenterologist and my oncologist both concur that Chemotherapy can reverse autoimmune disease. Good luck to all in your battles!