Hello to my new friends and family on this blog,
My name is sami I’m a 37 year old female from DC area, my account was just approved so I’m here to get some advice, share my story and if I can provide any help or support.
So to begin my story, starting in 2015 I had mild leukocytisis which is elevation of WBC and was consistent for two years finally my hematologist ordered a bone marrow biopsy that was Normal thanks God and white blood cells went back down finally after two years to normal . I was fine up to a month ago that I started having upper abdominal pain I related the pain to my new surgery in April for ovarian cyst removal but pain persisted had ultra sound and diagnosis was enlarged liver and my family doctor ordered CT and that was normal too. But I wasn’t satisfied with the answers and made an appt with a hepatologist she ran all sorts of blood tests: my Smooth muscle antibody was positive and that was suggestive of auto immune hepatitis and all the other enzyme levels were upper limit normal. I had MRI with normal results as well. She suggested I may have heart issuess and ordered a heart catheterization. I did right and left heart cath which is very invasive and results were all within normal limits. Liver enzymes were still all upper limit normal and pain persisted and ended up doing liver biopsy and that came out as zone 3 mild fibrosis and no autoimmune hepatitis. Last week I did MRCP and they found strictures all around common bile duct intra and extra hepatic and they are not sure what it is. Some doctors have said it’s PSC and some said diagnosis is not confirmed till I have ERCP. I have all these procedures with in the month of October and got married in that month as well as it was planned from a year ago and unfortunately it wasn’t fun because I was in pain from liver biopsy and heart cath. I’m very upset and devastated I think my leukocytisis from two years ago was starting of my liver issues and it wasn’t diagnosed. I’m scared of ERCPs complication which is pancreatitis and also this whole disease I know will be a much worse roller coaster than I have been riding for the past month. I’m normally very calm and strong but I have lost hope and all my dreams of being a mother and more seem like a dream at this point. Has anyone here got MRCP and was not diagnosed with definitive PSC and after ERCP diagnosis has been confirmed? I appreciate you taking time to read my story and give me some advice
Hi Sami. Welcome to the group and I’m sorry for all you’ve been going through (except your marriage…congratulations! 
). My hepatologist has still not said that he diagnoses me with PSC and it’s been a year since my first Cholangitis attack. I’ve had multiple MRCP’s and 2 ERCP’s. He just said he wants to reserve a small percentage of doubt that I have this disease. I think he’s being very cautious about my diagnosis, since it is rare. I also had a bad gallbladder which was removed last December and when I asked him what else he thought it could be, he said that he thought if it wasn’t PSC he is thinking it’s SSC (secondary, because of my gallbladder problems at the same time). The treatment is the same, so it doesn’t really matter. Last visit, he was more convinced it was PSC.
When I was first diagnosed last year, I was in shock and depressed over the diagnosis. I’m not quite 50 and have a 16 year old daughter and a 20 year old son. I kept thinking how I wouldn’t get to see them married and having children of their own, but someone in this group encouraged me to live life and know that you can live with and after PSC. It’s not a death sentence. I also have since heard stories from several younger women who have successful pregnancies and healthy babies even though they have PSC. So, please don’t give up. You have a whole new life ahead of you, with your new spouse. Together, you both can raise a family and enjoy life. Don’t let PSC dictate what you do with your life. In time, you’ll relax and things will calm down a bit. (Less doctor’s appointments and procedures.) You won’t think about it every day and you’ll decide you can still do things you want to do. Seize the day!
Sami, ditto on what Marlena said. About the only good thing about psc is that it generally progresses pretty slowly, but we have to be ready to handle the symptoms where and when they arise.
Until then, the best things to do are to keep with your hepatogist(not a GP or GI) and to keep positive (sometimes that is difficult), while finding a balance between living your live as you want and acceptance of the disease.
Jeff
Sami,
Welcome to the group. I can certainly understand your concerns about the ERCP. I think the best advice I could give regarding that is to make sure you are using an advanced endoscopist doctor connected with your hepatologist or transplant center who does these procedures day in and day out. Do NOT use your local GI to perform this procedure. The expert who does this routinely will be less likely to cause the pancreatitis you fear. I had multiple ones over the years from diagnosis to transplant and it really is the gold standard to definitively diagnose for PSC. if you do have PSC it’s the main tool to bring temporary relief to your clogged ducts. Once you find that good experienced doctor to perform the procedure I would encourage you to request the same doctor every time you have it done. He will get used to your ducts over time and know what to avoid to lessen the chances of complications. Good luck and please let us know if we can help in any way.
Mark
Marlena, Jeff, and Mark thank so much for your responses. I don’t feel alone anymore I feel like I have new friends and family that Can understand me well. I’m trying to stay positive and be strong . I know it’s just the beginning and I’m shocked but hopefully I get the strength to deal with this disease and fight it off. I changed the hospital form Sibley to Georgetown and my doctors as well. Now I’m under the care of transplant hepatologist and GI, they want to start with endoscopy on fri and ERCP next week. thanks for your useful advices. I’ll pray for healing and strength for everyone suffering this disease!
Sami
Hi. Like you I am a newbie to this next phase of my life.
I had a total colectomy (removal of entire colon) due to colitis and after that op was told I had PSC. That was some 5 yrs ago. The GI then said no it wasn’t. But then this year he did another MRCP which came back positive again to PSC. So without an ERCP they have diagnosed me only via MRCP.
I have my first appointment with a specialist heptatologist (on Jeff and Mark’s recommendation) in two weeks. He is reviewing my last 7 years of bloods and my last two MRCP so hopefully he will either confirm the PSC or send me for a battery of tests.
I have found this website most beneficial (thus joining from Australia) even though some stuff scares the … out of me. I have resigned myself to the fact that what will be will be and all I can do is fight what I can and live life to the fullest which I have done and will continue to do.
I will enjoy conversing with you over your journey.
Gaz
Sami,
I live in the Washington, D.C. area. I was diagnosed in 2016 with PSC. My GI used only blood work and MRCP to diagnose. He does not want to do an ERCP until my large bile duct closes. He is fairly conservative with procedures and medications. I did have something show up on one of my mri’s that caused concern, so he sent me down to see a colleague at UVA medical. The concern was cancer. It turned out to be a blood clot. UVA also does not recommend an ERCP for diagnosing, because they now feel that it may speed up the process. My point here is, I’ve had three doctors tell me that the ERCP should now only be reserved for when the large bile duct closes, or something shows up that they need a sample of.
All The Best!
The best advice I can give you is to not let PSC change your plans in life. When I was diagnosed with PSC 19 years ago, (I probably had it for 6 years before that too), I thought I shouldn’t have children, and so I didn’t. But it turns out, I would have survived to see them to adulthood, and I was worried for nothing. In fact, had I exercised more, I might have had more energy to raise them too.
As to right upper abdominal pain, I get that too, but have come to realize it has more to do with my intestines. I’ve also learned that bran cereal everyday can eliminate that pain for me. Of course, regularity may have absolutely nothing to do with your pain, but it is worth eliminating that possibility. When you’re in your thirties, you can’t imagine needing bran cereal, so it can help if somebody talks to you about eating enough fibre. There is a connection between PSC and the intestines which is not fully clear to the doctors. They know that 70% of people with PSC also have ulcerative colitis, but they don’t know why.
So, if you try a bit of bran cereal every night for one week, and monitor your abdominal pain, at least you can see if it’s your intestines or not.
Thanks so much for all the responses and support ! Praying for all of us here ! GOD BLESS