I was diagnosed with PBC 5 years ago this upcoming January through a liver biopsy. The diagnosis was later changed to PSC for two reasons; my AMA is negative and I have Crohn’s Disease. My GI doctor didn’t do any further testing after my initial diagnosis other than routine blood work. I’m having a small bowel resection in December due to a stricture caused by active Crohn’s Disease. I will be having a repeat liver biopsy at this time. I’m going to be seeing a new GI doctor after the surgery. I’ve already spoken to him and he will be ordering an MRI to get a good look at what’s going on in my liver. I’m very anxious about my actual diagnosis. I’ve done some research on the internet about both of these liver diseases, but have had no guidance from a medical professional. I’m scared!!! Would you please share with me your personal journies’ after your diagnosis’s? Thank you!!!
I haven’t had any responses to my post yet…
I’m wondering if I’m being too vague, which I’m sure is true! I don’t have a whole lot of information to give since my GI doctor has done nothing to follow my disease. I know my ALK is high usually in the mid to upper 200’s. I’m planning a trip to Mayo Clinic in Rochester sometime after my surgery which is scheduled for December 16. I know I need to see a GI doctor whom specializes in Crohn’s Disease and a hepatologist who specializes on either PBC or PSC. Does anyone else go there? I’m looking at seeing Dr. Widener for the liver aspect and Dr. Papadakas for the IBD.
Hello, Momfirst.
Thank you for taking the time to share a bit of your journey with us here in the support group. I simply wanted to reach out and say, ‘hello and welcome’ quickly before heading out the house and to say, sometimes it takes a few days for folks to get around to responding to posts. I personally check posts on my phone and then go back, (sometimes taking a while due to daily duties taking more time than I’d like to give) responding once I have taken a moment to sit down and give the person on the other end of the screen my full attention. I’m sure others do the same. You can fish around the site, using key words in the search bar helps, and find stories similar to yours in the meantime. I hope the lack of response to your post does not discourage you from staying active in the group. I came to use this site as a soundboard and an interactive learning center of sorts in the beginning when I joined, a handful of years ago. I will try to dig around the site for you later this evening when time permits.
I have found this group to be a huge asset in my walk along side my husband with P.S.C and colitis; I hope you too will find value within this group.
Take care,
Hello Momfirst,
Sorry your post has not been answered yet. With the Thanksgiving holidays and the weekend activities I haven’t had time. Before you proceed with biopsies and all, I would really encourage you to have your appointment with a hepatologist first. You need to transition from your GI to a hepatologist and let he or she manage your care from now on. you don’t need but one person at this point looking at everything and with a diagnosis of PSC that would be your hepatologist. This specialist is also a GI but his specialty is a big step above a regular GI as he specializes in the diagnosis and treatment of liver disease. He should also be able to treat your Crohn’s Disease as well or at least refer you to someone in his group that can. You need to have pin-point care with one trusted hepatologist that will guide you through this process. PSC is a tricky character and can rear it’s ugly head up when you least expect it. Don’t be too anxious but do educate yourself all you can about the disease. There is hope, there is help and there is a life with this disease.
I was diagnosed in 2011 and yes it was very devastating to me and my family. We didn’t know if I would die soon or what. Once we got over the initial shock and got more education on just what PSC is things started to settle down. Several things to ask the hepatologist. These are just from my experiences. When I was diagnosed 1) A endoscopic ultra sound was done. Then 2) an ERCP procedure was done the next day which confirmed the PSC. Next, 3) An MRCP was done. This is an MRI of the abdominal organs, liver, bile ducts, etc. Make sure they do it with and without contrast. 4) once all that is done and the diagnosis is certain and they know how strictured your ducts are, then they will start a course of treatment that will probably involve Ursodiol which is a drug which thins the bile to make it easier to flow through your damaged bile ducts. There are also medications like Rifampin that can be prescribed should your itching get really bad. One tip. When you have severe itching, it is an indication your bilirubin is elevated abnormally so, and it may be time for another ERCP. This can be one of the things to guide you so you will know when to contact the hepatologist for intervention. When it gets like that you will also have RUQ pain and possibly right side back and side pain. I never got a liver biopsy until 2 years after diagnosis when I was participating in a trial drug for PSC. Again, you need to consult with the hepatologist before you have that surgery. Abdominal surgery can be dangerous for patients with liver disease. There’s so much more to say but hopefully this can give you something to start with. Please don’t hesitate to ask anything that comes to mind. We are always here to help.
Mark
PSC 2011 / Liver Transplant 7-2015
Hi Momfirst! Welcome! I haven’t checked the board in a week or so, please know we weren’t ignoring you! I’m a newbie to this group and to the disease. I was just diagnosed in October with PSC. I had a severe infection with cholangitis and it sent me to the hospital. My gallbladder is full of stones, but the couldn’t find a blockage from a stone and they were scratching their heads the first day. The next day, a GI doc camevin and told me he’d like to do an ERCP to look around and hopefully find the blockage and clear it. Worked like a charm and I felt so much instant relief when they woke me. They told me that they wanted the infection to clear up and then do another outpatient ERCP and that’s when I was diagnosed. I’m still learning and fumbling around. 
I just had my first colonoscopy to rule out polyps and check for Ulcerative Colitis. All clear for now, which was a relief. I have a hepatologist appointment scheduled for late January and I’m just taking things as they come.
I’m sorry that you have the double whammy of Crohn’s and PSC. My best friend was diagnosed with Crohn’s a week after I was diagnosed with PSC and she had a blockage and they removed 2 ft of her intestines, but has healed well and has no ostomy bag. She was sick for over a year and saw several doctors before they finally figured out what was going on, so she’s happy to be feeling “normal” again right now.
Anyway, this is a great group and very helpful, so don’t be afraid to ask questions. I’ll be asking too as I figure all this out! 
MarLena,
Yes, I’ve been hit with a whammy! I was diagnosed with Crohn’s Disease 26
years ago so I’m pretty used to that nasty disease. I’ve had three small
bowel resections because of my Crohn’s Disease and am scheduled to have my
fourth in about two weeks. I had the first surgery due to a stricture a
little over a year after my diagnosis at the age of 19. I did pretty well
after that surgery. I had my three children before having my next
resection. I had flares but was able to control my disease without surgery.
I had my second surgery due to a very severe stricture which couldn’t be
reduced by Remicade. I developed an abscess about ten days post surgery.
They placed a drain in the abscess but unfortunately it still fistualized
tiny small bowel so a repeat surgery was needed. After surgery they
switched me to humors but I wasn’t able to tolerate it. So they tried
remicade again but I had an allergic reaction during my first infusion.
I’ve been on Cimzia since then but have felt no relief! I’ve developed
another stricture which is at risk of perforating. So, my Crohn’s Disease
is not under control and considered severe.
Five years ago I had my right ovary removed because of a cyst, my
gallbladder removed due to severe upper right quadrant pain and an
inconclusive HIDA scan and a liver biopsy which they did because of my
concern about irregular liver blood tests. That’s when I was diagnosed with
the liver disease. My doctor hasn’t been assertive at all with my treatment
of Crohn’s or liver even with my probingand my options are very limited as
I live in Montana. I’m hoping to travel to Mayo Conic soon!
I could go on and on but would not know where to stop! I’m thankful for
finding this group! I really need help getting on the right track!
Gloria,h
Thank you for reaching out to me. I know everybody’s busy with the holidays and just life! I’m sorry I may have came across as abrasive! I’m not usually like that. I think I’m feeling a little too much stress and it’s showing in my mannerisms. Again, thank you for reaching out!!!
Mark,
Thank you for all your advice. Unfortunately there is no hepatologist in my area. I’d have to travel at least eight hours to the closest one and I’m not able to do that at this time due to finances. I haven’t been able to work due to illness. I have had a lot of abdominal pain, severe diarrhea, nausea, weight loss, hair loss,etc for over five years. I have an appointment this Friday to apply for SSDI again! Hopefully I’m approved.
I have contacted a GI doctor here that specializes in hepotabiliary disease who has agreed to follow me after my surgery. He thinks it’s important I have the surgery right away because I’m at risk for a small bowel perforation. He plans on ordering an MRI after surgery. I’m assuming an MRCP is what he means. I’ll make sure before hand and ask that it’s performed with and without contrast. The clinic I go to is part of the care network at Mayo which is why I’ve decided to go there to see a specialist. I’m also going to ask my new doctor to contact them about my care immediately. That way we’ll be working towards the same goal here until I can get there.
I’m sorry if my grammar, etc. isn’t the best. I’m replying on my phone. The keyboard isn’t very efficient.
Please keep your advice coming!!! Yes, I have been experiencing all over itching. It’s not completely driving me crazy at this point. A bath seems to calm things down a bit. I’ve been struggling with URQ pain for over five years so that’s nothing new. My bilirubin is within range. I have been experiencing many deficiencies; calcium, potassium, B-12, Vit D and a protein deficiency that caused edema in my legs and feet. That’s gotten better though! The calcium and protein deficiencies are the newest. I know the surgeon is going to do a blood clotting test before surgery. Trust me I wouldn’t be having this surgery if it wasn’t completely necessary. All physicians involved agree it’s very needed and soon.
Nicole
Momfirst,
Welcome and thanks for sharing your experience - I believe we can learn a lot from each other’s journey.
Depending on the results of your MRCP a liver biopsy may not be necessary. A liver biopsy is invasive and due to improvements in imaging has been superseded by MRCP to diagnose PSC. If I were in your shoes, I’d inquire about getting the order of these tests reversed.
You mention a calcium and vitamin D deficiency. It is very common for people with either PBC or PSC to have bone density issues due to fat soluble vitamin deficiency. If you haven’t had a DEXA scan, it wouldn’t hurt to ask your doctor in order to check for osteoporosis.
There are a lot of good posts on this site discussing potential itching remedies. If you are having trouble sleeping, benadryl can work in a pinch. Popular prescription drugs include cholestryramine and rifampin.
I was diagnosed back in 2001 at 19. I otherwise ignored the disease save for a brief stint as a high-dose Urso guinea pig. Aside from progressive fatigue I was otherwise asymptomatic for 12 years. In 2013 I developed recurring cholangitis attacks, lost 25 pounds, and finally understood what they meant by suicide itch. My hepatologist was overwhelmed and referred me to a transplant team. I had a meld of 15 and was one more hospital visit away from potential exception points. My transplant hepatologist was fantastic and discovered a lot of issues including osteoporosis that the prior 4 specialists failed to address. While going through the process of being listed I was started on an experimental course of oral vancomycin to attempt to treat the PSC. This treatment has given me the healthiest years of my adult life - normal blood work, no symptoms, and has stopped further progression per imaging. I wasn’t listed for being in such good shape but continue under the care of the transplant team in case things start to go south again.
Jtb,
Thank you for the response! I know I’ve got a lot of testing ahead of me!!!
I think it’s going to be hard to figure out which symptoms are caused by my
liver disease and which are caused by my Crohn’s as many of the symptoms
are the same. I hope to find a great doctor who can get me sorted out as
quickly as possible. It’s exciting news about the vancomycin working to
eliminate your symptoms!!! I had C-diff a couple years ago and was
prescribed vancomycin for it.
Nicole
Oh my goodness, you have certainly been through it with your Crohn’s!
I hope you can find a doctor that can help you manage both diseases really well. I live in a town west of Atlanta,GA and I really only have access to GI docs here, but am fortunate that if I travel 30-40 miles into Atlanta, we have 2 great transplant hospitals and many hepatologists to choose from. The closest Mayo Clinic to me is in Jacksonville, FL and despite my mother-in-law thinking I should go there, I think it’s a bit much to go that far with the other 2 hospitals close by. I’m looking forward to meeting my hepatologist in January and hopefully getting more insight and information from him!
MarLena,
I’m happy you have an appointment with a hapatologist in January! I hope they’re very informed about your disease and also a good fit for you!!!
I’m taking this one day at a time. I don’t think my family realizes how serious this disease is. I haven’t talked about it much or shared much mostly because my GI doctor really never addressed it so I kinda led myself to believe it wasn’t a big deal. I know it is a “big deal” at this point. After my biopsy and MRCP I will have a definitive Disease and will share, educate and encourage them to educate themselves. I really need their support but I don’t think they truly understand how sick I am from the Crohn’s, much less what symptoms are my liver disease and the upcoming symptoms I’ll deal with because of it. I’m so happy to have the support of this group from people who really understand!!!
Nicole
One suggestion about the liver biopsy. Look into the fibro scan instead. We got our insurance to pay for it . I had to pay for it first (about $200) and after wrote a a letter to request insurance to cover it. I sited the research why it was the more reasonable and safer way to go. At the time the FDA was going through the approval process. Liver biopsy can introduce infection and bleeding issues (not to scare you but best to be informed). The fibroscan is non invasive and accurate… even better than the small sample they get with a biopsy- which might be from an area of your liver that does not represent the whole picture. You have to take charge of what you want in this situation. Also, go to a specialist who knows PSC. It totally makes a difference. (7 years post diagnosis here and so grateful for the specialists I’ve had). Doing pretty good, but been through some rough patches for sure. Educate yourself… weigh out what you read. Not everyone is the same with this crazy disease. SO sorry you have to have joined the group here, but you came to the right place for support. Hang in there.
Dolphin 5,
Thank you for your reply! I’ve never heard of a fibroscan. I’ll call and ask my doctor about it. I’m going to do a little bit of Internet research too so I can educate myself on the procedure. I’ll also have to see if it’s available in my area. I’m learning so much and know I have so much more to learn! I had an appointment with the SSA to apply for SSDI today. It went well and the guy who did my intake seemed optimistic in me accepted! I’m very hopeful!!! This is the third time I’ve applied. They say the third time’s a charm. If I’m denied this time I will definitely appeal. I haven’t worked a full time job in over 4 years. The last full time job I had to quit as I was hospitalized twice and put on medical leave for an indefinite amount of time and was only employed there for 8 months counting the two months I was on leave which were the last two months I was actually employed. I finally decided to quit because they were short staffed without me and couldn’t higher anyone else and I had no idea when I’d be able to return. I did work a part time job for two years a couple years later. I worked about 25 hrs/wk. I was hospitalized every three while employed at that job. The only reason I wasn’t let go is because my boss was also my friend. After two years enough was enough.
Nicole
One observation. Although Fibroscan’s are useful, in all my experience they are not a full definitive replacement for a liver biopsy. They are more of a confirmation that the results of the biopsy are indicative of your condition. I’d certainly consult with your hepatologist and go with his guidance on this. Main point is don’t count just on a fibroscan to know the level of cirrhosis. Liver disease is not something to mess around with especially when it comes to PSC.
Mark
PSC 2011 / Liver Transplant 7-2015
Moms first, sorry you are faced with both PDF and chrome. One is bad enough.
I was diagnosed with psc about 2.5 years ago. Since then I have had two ercp’s to unclog a bile duct, and have had a good bit of some fatigue and itching. My blood work last week showed good improvement in most areas. So all in all, things are good here. Luckily psc progresses pretty slowly, but we have to be ready for when things going badly at any time.
Thank you JeffDC1! I’m trying to prepare my family in the case things do go
bad quickly…
I think every body’s in a bit of denial at this point. After Christmas I
plan on having a family meeting to give them as much information I can and
encourage them to further educate themselves. It’s really hard to wrap my
own head around! I certainly don’t want to feel pitied either! So much to
learn!!! I’m very thankful for today and look forward to tomorrow!
Nicole
fcmmark,
Thank you for sharing your abundance of knowledge about this scary disease!!! You seem very well educated on this topic! I’m wondering if you could point me in the right direction as far as educating my family about this disease. I’m looking for something simple to understand for those who don’t a lot of knowledge about the liver. If you’d prefer to private message me I’m ok with that. It’s something that I need to do. My husband and I will sit down with our kids first. They are ages13-19. They are all very intelligent! I’m not bragging but they really are! 
So they are capable of understanding pretty well. Then we’ll have a family meeting with extended family. Some are well educated on health, others not so much. I don’t think most people believe they’ll ever know someone who will need a liver transplant at some point! I certainly didn’t! I appreciate anything you have to share.
Nicole
Momfirst,
I got your message and will try to get a reply with some info later this evening or tomorrow. It’s a good inquiry so I want to be as thorough as possible.
Mark
Nicole,
There are a number of resources to gain more information that you can share with your family. I’ll list a few here. This first one is from the Mayo clinic. When you click on the link it will take you to the first page of introduction, but notice on the left that there are multiple pages to this article that will take you through the experience of PSC and some things to expect. Education is key so this is good that you are sharing with your children. My two girls were 19 and 21 when I was diagnosed and throughout the process my wife and I kept them fully informed at what was happening to me and they both along with my wife were a wonderful support team that helped me through this time. One thing I will mention to you. Don’t go to your hepatologist appointments alone if you can help it. Take your husband with you or one of your children so they can take notes, ask the questions you don’t remember to ask, etc. I would often send out a family email after appointments, MRI’s and procedures and just give everyone an update of what happened, what the findings were and what the prognosis is. I did that my entire time with PSC and through and after my transplant. I set up several email lists in advance and would send updates. You will be pleasantly surprised that the more you share of what’s going on, the more support and words of encouragement will come. And you will be able to bless others yourself along the way as they seek to encourage you.
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Mayo Clinic on PSC - http://www.mayoclinic.org/diseases-conditions/primary-sclerosing-cholangitis/basics/definition/con-20029446
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Here’s a guy discussing PSC. A little boring but informative. https://www.youtube.com/watch?v=yymOjNyE5_o
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A brief patients story - https://www.youtube.com/watch?v=k_0OQlLc6hQ
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The Faces of PSC - https://www.youtube.com/watch?v=xEadEPW8Prg
Nicole, these are a start for you that hopefully will give some information to your family. I don’t want you to be afraid of the thought of a liver transplant. It is one of the most wonderful things that happened to me and I believe it came at a time that I didn’t have much time left on this earth, but God in His grace spared me for my wife and family. After 1 year and 6 months I’m doing well and feel the best I’ve felt in over 10 years. I may private message you a few photos and some other stuff at some point that you can share with them to show them that you can get better. Take care.
Mark