If you've just joined us - WELCOME!
Drop by here and tell us a bit about yourself.
I was diagnosed with PSC five years ago, and UC since 2000 - though I reckon I've had both for longer. Can't wait for the day we get a cure for PSC!
I have a six year old daughter and I work in a secondary school doing a job I love. Luckily I get to sit down for some of it so not too tiring. You can find me crashed out asleep by 8pm most Friday nights though!
My 13 yr old has just been diagnosed with PSc and Ulcerative colities overlap - as you can imagine I am looking for as much info and help as I can. About us? Both mad Birmingham City fans and can be found most evenings watching cooking programmes and making bath bombs!
Welcome and I hope you find the information on this site useful. Have you joined our facebook group? There's quite a few Mums of PSCers on there too.
Finally, we have a meeting in Oxford this Saturday - it's a great chance to meet others affected by PSC and also get an update on PSC and its management from Dr Roger Chapman.
Thanks for the comment Matt have had a few internet probs so not been on recently (missed the oxford event so:-() but am keen to attend the next one
Now just off to facebook to join that group too :-)
hello becky, welcome to the forum, I have just posted something entitled 'things to share that might help" it might sound like a lot of hard work but the results for my partner have been amazing, his liver results have improved significantly, I had heard that psc can be slowed down and in some cases reversed, I wish with all my heart your daughter all the best and hope you find all the support you may need here, best wishes, michael.
I have just been diagnosed with PSC though I suspect I've had it for some time as my liver enzyme levels have been askew for a few years now. I was diagnosed with UC when I was 21 but had symptoms for as long as I can remember. I am 56 now and have an ileostomy. I was given a j-pouch in 1996 but it never worked properly for me so 8 years and as many operations later I had it removed and was given a perminent ileostomy. I've had another 2 surgeries since then to free off adhesions but otherwise had been coping quite well apart from the occasional bowel obstruction and a haitus hernia.
I'm now waiting for surgery for hernia and this is what I went to my gastroenterologist for when he discovered that I have PSC. To say that I am devastated would be an understatement. I already knew that there was a 5% chance of my UC developing into PSC but, like many of you I suppose, I thought this only happens to other people.
I am waiting for an MRI scan to see how what stage I'm at and to check for carcinoma and I am absolutely terrified of what it will show. I live in Jersey so know that when the time comes I would have to travel to the UK for a transplant. I have no idea how they can coordinate that when the time comes. I am making a list of all the questions I need to ask when I go back for my next appointment and would appreciate any suggestions as to what I can ask him.
sounds like you are having a really bad time of it
you may find this useful
Also if you join the Facebook group you amy find that members may provide some other additional suggestions
just been diagnosed after 1 1/2 years. Initially they thought it was AIH. Seeng my consultant in a months time to discuss where we go from here diagnosis was confirmed in a letter. On loads of Meds and feeling tired, don't know if that's age or illness. I am only 44!
sorry to hear that youre not feeling good, suggest you read our article for newly diagnosed http://www.pscsupport.org.uk/just-diagnosed
There is some really useful information on the web site as well as a lot of support on the Facebook group.
Would suggest that you write down a list of questions and write down your answers, check if you dont understand what you are being told
I've just been diagnosed with PSC, without ulcerative colitis.
My first liver problem was actually 6 or 7 years ago - massive liver pains and vomitting that lasted a month or so, but the GP thought it was Hepatitis A, and I never got it looked into properly.
I never had another prob until last January, when I had much milder liver pains, turned the colour of custard, and kept getting bad headaches and dizziness. Since then, I've had cholangitis 8 times, mostly only lasting a week or so, but the last one has lasted for almost 3 months now. I'm a bit worried that it's not going to go away this time. At least the jaundice isn't itchy (touch wood!).
I've been referred to Leeds for further diagnosis. All I've had so far is an MRCP and a colonoscopy.
Welcome to the site, hopefully you will find the information on here useful. You will find the PSCers on the Facebook site very supporttive as well
Sounds like you're being well looked after. Let us know if you have any questions and we should be able to find somone who knows
I am a 46 year old norwegian diagnosed with "ulcerative colitis" some fifteen years ago. In 2011 I had an acute bile duct and systemic infection, and was subsequently diagnosed with PSC. Since then I have experienced 7 acute infections and have had bile duct stents twice. The liver function is ok, but the fatigue is now my biggest challenge, and my life is turned upside down the past two years.
I used to take care of my two kids, work more than full time, build my own house, mountain hiking, bicycle rides etc, etc..... Now I plan ahead to go to the groceries or move the lawn.. I go to work one day a week.
I need reassurance that this is just a phase, and that it will get better, knowing that noone can give me that. So meanwhile I'll settle for the illness turning worse, relying on the surgeon to help me.
Thank you for 'listening'!
Hello got my final diagnosis. AIH with overlap Primary Schlerosing Cholangitis. It has been caught nice and early so no need to panic. On Meds to keep it under control and having sigmoidoscopy to rule out colitis.
Consultant has reassured me that I can continue as I am and they will monitor me with monthly blood tests. I feel very relieved.
Hi, I was diagnosed a couple of years ago but not many symptoms as yet. I have been scanned and seen regularly but get the feeling little is actually known about psc.
My interest is therefore in looking into what help I could give to help research, either to be tested on or to lobby or to raise funds for research. As to the last does anybody know of a charity set up to raise funds for research? I have seen that this support group gives some (but also has other important support responsibilities). I'm interested in also finding a charity which would concentrate on helping towards cost of cause and cure. Is there a lobby group which publicises and pushes for funding for research?
Could anyone help?
Thanks very much
sorry to hear you are having a hard time of it, I know that a lot of PSCers suffer from Fatigue. There are some articles on this web site about fatiigue which I can point you to if thats useful. Also the Facebook group provides a lot of support, you may want to join.
Hope this helps
Hi SkiBlue again,
It sounds like you have things under countrol, but if theres any questions you may have please ask away on here or on the Facebook group. We will try and get you the answer. Monitoring is the best mechanism to keep a check on the PSC
I think there are other organisations however this charity is in touch with some of the leading consultants in PSC and they are trustees of this charity. If you want to make a donation to this charity I can put you in touch with Keith who organises the charities finance.
Are you going to the meeting in Birmingham this weekend? There you will find a number of experts and some interesting presentations.
Glad to hear you are well
Supporting and funding research is a core part of PSC Support's objectives. There's details and commentary in the latest newsletter about the charities research strategy and grant policy . PSC Support is the only national PSC related charity and continues to grow through the support of it's fundraisers and donors. I'm off up Kilimanjaro later this year to fund raise for them ;-)
There's info around the charity's objectives and governance here if you're interested.
Hope that helps, and welcome!
Today I was confronted that a good friend of mine suffer from PSC. He says he has not more than a year...that there is nothing to do. He is being medically followed in Johanesburg - South Africa and I am afraid that he is not getting the best treatment. Can you please enlighten me about this? Is there a stage in this disease when nothing else can be done? Thank you.
sorry to hear about your friend. Do you know whether he is being cared for by a specialist or not? and whether this is where this news comes from?
we know of a PSC consultant in South Africa. See details below. Wold suggest your friend sees this consultant to confirm diagnosis
Hi there, I'm a parent of a beautiful 7 year old girl, diagnosed with PSC/AIH overlap 12months ago, with symptoms prior.
We live in Sydney Australia, previously in the UK.
This is a warmer place than Google search results and I'm pleased to have read the supporting articles and advice.
Many thanks for being here.
So sorry to hear that your little girl has this diagnosis. I hope you both get the support you need x
Welcome to the site I hope you will find this a useful web site. Sorry to hear about your daughter. If you have any questions please ask away we will try and find someone to help
I am the father of a 22 year old daugter (does not live me) who has Acute Pancreatitis and Cholangitis, she also is Bipolar to add to the complications she has had 3 operations the first to remove her Gal bladder that I beleive may have caused the condition. She has now been told there is nothing more they can do for her and have put her long term pain reliefe. I have spoken to one of your advisers who has given me some advice with to start with about getting her reffered to a Specialist Liver Unit. I have to broche things carefully due to the Bipolar. I was also told of medication that is currently under trial to cure this or PSC condition can anybody supply me with any information on this. This has been a bit of a steep learning curve. Many thanks.
sorry to hear about your daughter, I think that being referred to a specialist to get a better understanding of what can be done for her is your best step. There are a list of specialists on the web site. The are a number of medications which are being trialed - nor urso and Vancomycin.
I would suggest you read the articles on this web site as they have been checked by specialists. Also the newsletters also contain some really valuable information on recent updates.
We are here to help were possible so please ask questions and we will try and get you the answers. In addition our facebook group is very active and very supportive
Thanks for the reply. I have been reading up on your web site to get a better understanding of the condition and must admit did not have to much knowledge around this condition prior to this. I am still a little confused in that is Cholangitis and PSC the same condition or is it a different variant as I seem to getting conflicting results in my research. Although my daughter is very knowledgeable around her condition I just feel I have to be considerate in what I ask her due to her Bipolar and do not want to make matters worse for her so would like to be more informed before I broach the subject more with her.
I have recently subscribed to your fb page and will be following that with interest and maybe suggest that my daughter also subscribes to this also.
Cholangitis is part of PSC which stands for Primary Sclerosing Chonlangitis
The difficult thing is that it seems to affect people in different ways. PSCers usually have a very good knowledge of their own condition and usually ask lots of questions to their consultants
There is another facebook group for younger PSCers which your daughter may wish to join as well
Hello to everyone, especially to you Crashtest. I am Mum to a nearly 3 year old little girl diagnosed with PSC/AIH overlap and UC at age 1. We too are in Sydney, and I am from the UK originally. I find the lack of support here very difficult so if you would like to e-mail or message me please get in touch.
My name is Ben. I am just about to join this community - I was diagnosed with PSC just over a week ago. The seriousness of the condition is kind of gradually sinking in. I have been googling quite a bit but have decided not to do so anymore as it is quite frightening! I have instead decided to make a list of questions as they pop up and put them forward at my next appointment at the liver clinic. I will be having a biopsy done in the next couple of weeks as well so my consultant will be in a better position to tell me more about it and where I am currently at.
The things I am keen to find out more about is for example in what way it may affect me? Will I be able to continue to work? (I have actually fallen asleep on a couple occassions at work - at least I know the reasons why now! ;-) ) Liver transplant.... Can it be a live donor...?
I have told myself not to worry too much and deal with things as they develop really. A lot easier said than done but I think that is the way forward! As it's very early days I haven't told many of my friends yet but they will gradually hear about it and suppoprt network will increase.
Welcome to PSC Support, we hope you find the group useful and please post any questions you may have.
Googling is PSC is not recommended you get all the scary stories.
On this site there is a useful section for newly diagnosed and would suggest you take a look at this. Also questions to ask your consultant.
Also are Facebook group is very active and will provide plenty of support anf feedback.
hello everyone, I was diagnosed with ulcerative colitis about 8 years ago, luckily for me I only had a couple of episodes and have been managing without any medication whatsoever for many years now, occasionally I get the beginnings of symptoms and I quickly take omega 3 in therapeutic doses for about 4 days, this has put me back into remission and I continue on my merry way with no omega 3 or anything at all, this has happened perhaps twice a year for about 5 years... My son, then aged 16 was diagnosed with ulcerative colitis last year, and soon after psc. Our GP persuaded me to get back in the loop because I had been discharged as a result of missing appointments etc. I recently had a review, an MRI scan on my liver has just revealed likely psc too, a biopsy will establish whether I have it or not. I am of course upset, also confused as to why this wasn't discovered before, I have no idea how long I have had it, or if indeed I actually do, but I have been told it is "very likely". I have three other children, all younger, I fear for them too, my father died of colon cancer, there seems to be no other liver problems in our family though. I am deeply upset about my diagnosis and that of my son's, I feel fearful that I will become ill and will need to lean on others to help me with my children, I'm a single parent. I am actually very well currently though, so I know I am just being fearful and it's not particularly rational or helpful. I am very interested in nutrition that may help, is there any information out there on particular diets that are beneficial or at least not further damaging to ulcerative colitis and psc sufferers? I have begun to gather information but wonder if anyone else has done some of the work before me??
Hi my partner has PSC and is awaiting a liver transplant. He is on all kinds of medication including Lactulose but is still becoming encephalopic every 4 or 5 days and has to go into hospital to sort it out. Has anyone else had similar experiences and can they offer any advice?
Wow what a lot of questions. I will try to answer as best I can and try and find out about the others
About your PSC, I am surprised only Omega 3 to treat it usually we are on medication for UC or Crohns
Sorry to hear about your son, has he been checked for PSC too?
PSC can take a while to get diagnosed, my PSC was diagnosed 2-3 years after PSC. Its a fairly rare condition
ABout your condition deterioarting, I would make sure that you are checked regularly by a specialist http://www.pscsupport.org.uk/find-psc-specialist
About diet http://www.pscsupport.org.uk/diet
Hope this helps.
sorry to hear about your partner, it must be very worrying.
I havent heard about encephalopic, but can ask our facebook group if that helps or try and research more myself.
Let me know
Thought I would post an update re my earlier post about my daughter. After being told there was nothing more that they could do for (Age 22 years)
and they would be putting her on long term pain reliefe she has nown seen a new consultant surgeon who has told her that he will be doing further tests
on her, although this is not a specialist unit I did say to her ( from advice I recieved on here) that she ask to be reffered to a specialist liver unit. She said
that when she had the tests done if it was liver she would ask to be refferd to a specialist unit. So a lttle bit of good news.
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