I hope everyone’s having a lovely symptom free day !
I’ve been diagnosed with PSC and UC for around a year and a half; I feel like it controls my life !? I work around 20 hours a week on a good week which is what i need to pay for my car and medications. Every month I’m barely scrapping by and unable to buy little things like shampoo.
I really try my hardest to work but the symptoms I have are horrendous. I have the worst imaginable pain sometimes in my right upper quadrant around my liver, my stomach swells on that side and I’m left unable to stand from the pain. Just yesterday I had worked 3 hours and was found on the floor screaming in agony, to the extent my lips went blue because I couldn’t breathe through the pain.
Six months ago it would make my eyes water and I’d have to sit down, I didn’t get any of the swelling around my liver and the pain would pass in 20 minutes. Yesterday it was an hour and a half before I could move even after taking codeine…
If anyone can explain this pain, or why its getting worse. I attribute it to the scarring in my biliary tree progressing and bile building up.
I also struggle massively with nausea and keeping weight on with no appetite whatsoever. I did suffer horrendous abuse as a child and in an attempt to end my life, drank bleach, burning a valve in my stomach. So the sickness I experience 4 or 5 times a day i attribute to the lack of a functioning valve. I wonder if the nausea is from the valve or my liver!?
I also suffer dreadfully with kidney stones, at least one a month. Is that linked ? My urine is always a neon green/yellow colour and I assume thats my kidneys filtering out bilirubin that my liver isn’t.
I do have around 40% liver function and quite bad scarring. I was prescribed Ursodeoxycholic acid and took it until my 18th birthday when it was free, however I’m now unable to afford that. I am in the process of applying for free prescriptions so I can continue taking ranitidine, omeprazole, codeine and azathioprine. I do still have an 8 weekly infusion of Infliximab/Remicade to keep the UC at bay and, touch wood, I’m relatively symptom free with that.
If anyone read through my little essay, I appreciate any help or advice you can offer and wish you all a good day !
Love and good wishes,
Hi Emily, I am so sorry for all that you’re going through. I’m not sure where you live, but I highly suggest you look into a very mild antibiotic called oral vancomycin. You can just google it in connection with PSC and will see information, or at least read an article called “The Disappearing Liver Disease” by Dr. Cox out of Stanford. My daughter started on it when she was 20 and it had been a miracle for her and others on this site. It doesnt always work, and it can be hard to find a doctor that is willing to prescribe, but if it does work, it can be a tremendous help. See if your doctor can have you try if for a month, you should be able to tell if it is helping (you might see it work much quicker). After that time, have him run your liver enzymes and see if they have normalized. Of course this is easier said than done I know…especially when you’re having issues paying for medication. Perhaps you can look into Medicaid. I’m no expert but perhaps others can give you advice on that end. I wish you the best of luck and feel free to ask me any questions. You could also search vancomycin on this site and you will read a lot about it from others. Good luck!
I haven’t heard a great deal about Vancomycin, but after reading this I spoke to my GP this evening. He seemed VERY reluctant, just listing side effects of it. He also mentioned it was £150 for 28 days worth which would be mostly paid for by the NHS as I live in the UK. He is writing a letter to my hepatologist to seek his opinion on Vancomycin and to see if theres anything more that can be done about the pain I’m experiencing.
So hopefully at my appointment in 2 weeks time I’ll have a few more answers
Thank you for your help !
Yeah, that’s what I mean that doctors are reluctant. My daughter, and most everyone else that uses it, have no side effects. But if you take it and experience some, just stop. The worst it could do is nothing, the best is it could reverse damage (my daughter’s liver was able to heal completely)…most people notice UC symptoms stop or reduce in just a week or so. Google “primary Sclerosing Cholengitis oral vancomycin”. Even if he gives you a two week supply it might help in that short time. Good luck.
From your descriptions I am wondering if you have a bile duct blockage. What is your current bilirubin? You may need an ERCP.
Have you ran any fever, any chills? If that turns to an infection that’s no fun and will need immediate intervention. Somethings going on that’s not normal PSC symptoms possibly as well.
Emily, I’m so sorry to hear about your terrible, painful symptoms. The only advice I can give you is what I did for myself. After visiting a hepatologist at UAB, which is where my PSC was properly diagnosed after some initial confusion, I got a second opinion at the Mayo Clinic in Jacksonville, FL with Dr. Harnois. She and her liver transplant team immediately set me up for a liver evaluation. My final test revealed that I had cholangiocarcinoma, and I was successfully treated at Mayo. Shortly thereafter I received a liver transplant, which saved my life. I cannot say enough about the liver team at the Mayo Clinic in Jacksonville, FL. If you can get there, you might be able to stay at The Gabriel House of Care, which costs $40 a night and is minutes from the clinic and ER, while your liver situation is being evaluated. Good luck!
Emily, welcome back, and sorry you are having all these symptoms. What does your hematologist say/do? Have you had any imaging-mrcp, cat, mir…What does your most recent bloodwork show?
I have bloods done every 8 weeks, theyre all the same as usual, high levels of bilirubin, alkaline phosphatase ect. the only difference in 8 weeks was my haemoglobin dropping slightly from 120 G/L to 109 but i’ve always struggled with iron
I also have a yearly MRCP and the most recent, in May showed more scaring and damage to the top left of my liver. i have an MRI yearly also, to check my spleen because its larger than it should be, and my kidneys are too big
I only see my liver specialist every 6 months, but my gastro doctor every 8 weeks and no one can really help give any answers or explanation as to the pain
Thank you so much ! I live in the UK so I don’t have a whole lot of choice in Doctors as its paid for by the NHS. I did have a liver biopsy, MRCP and ERCP and obviously bloods which diagnosed PSC, i’m assuming that has ruled out the cholangiocarcinoma
I’ve always said, if I win lots of money I’d go to America and see what other options they’d offer me. I shall keep in mind Jacksonville, thank you !!
Hi Emily, I’m so sorry to read of all your suffering. My daughter has kidney stones and I had PSC. The thought came to me about whether you can qualify for Medicaid in you state. Medicaid (unlike Medicare which is for persons 65+, or who have special qualifications) is a state program that provides citizens under age 65 with comprehensive medical care. If you live in a populous area you may be able to inquire at you village or city call. If you live in a less populous area, I would call your county administration and ask for information about Medicaid. Don’t take a first “no” as the answer. Check further through other agencies such as your township or charities such as Salvation Army, Saint Vincent DePaul or Catholic Charities. They will all help you regardless of how you feel about religion. Never give up. I found I always could find the strength when I had ulcerative colitis, PSC and back injuries that required surgery. Tell yourself often that you have confidence in you ability to meet whatever evil comes your way. And, no. You have not done something you are being punished for.