Diagnosis

Being diagnosed with an illness or chronic condition can be scary and intimidating, but my diagnosis of Primary Sclerosing Cholangitis (PSC) brought a sense of relief. Well, if I’m being honest, there was also a little fear.  It brought relief because I had a long road of tests, procedures, and doctor visits to finally get answers. So I’ll start at the beginning… (Disclaimer: It’s going to get personal real fast.  🙂 )

In May of 2014 I had been experiencing some abnormal stools and decided to see my primary care doctor to get things checked out. She ordered some bloodwork to see if we could figure out what was going on. The bloodwork showed elevated liver enzymes, so I had an ultrasound to check out my liver, gallbladder, pancreas, and kidneys. Everything appeared normal and the doctors were still unsure of what was causing the elevated numbers, so they decided to have me go in for an MRI. Again, everything appeared normal, so I was referred to a Gastroenterologist for next steps.  

The Gastro decided a colonoscopy was the next course of action, so I was able to experience the fun procedure a little earlier than most (at age 28). The preparation of drinking a gallon of laxatives was definitely the worst part. To top it all off, I was the youngest patient in the waiting room by at least 20 years.

After the procedure, the doctor came into my room to review his findings. He stated that he removed a polyp (which could have turned cancerous if I didn’t have a colonoscopy until the usual recommended age – whew!) and that I have something called Ulcerative Proctitis (a less severe form of Ulcerative Colitis which causes inflammation in the last few inches of the large intestine). He quickly stated that he’d write me a prescription for the Proctitis and that I need to come in for regular colonoscopies every few years. Unfortunately, the doctor appeared to be in a hurry and did not really allow for us to ask many questions before he was out the door. Before he left, he did indicate that the elevated liver enzymes were not caused by the Proctitis, so we were back to square one again.

The good news is the Proctitis medication worked immediately and now I only use it as needed for a few days when a flare up appears.   

I consulted with my Gastro and he thought it would be best to conduct an endoscopic retrograde cholangiopancreatography (or ERCP) next. Most of you are probably wondering what the heck an ERCP is. It’s a procedure where the doctor examines the pancreatic and bile ducts by placing a tube down your throat. If they find a blockage during the procedure they will often place a stent or make an incision to open things up. Once again, the procedure did not reveal a clear diagnosis for me because everything appeared pretty normal during the exam.

I did have my first introduction to PSC at this point when my Gastro casually mentioned that PSC might be a possibility. He indicated some of my liver ducts were a little more pink than usual but it was a small chance since it’s a rare condition and there was not a clear sign during the ERCP. He did not seem worried and felt that there were no more tests we should run at this time. My husband and I wanted to start a family soon and the Gastro fully supported continuing to live my life as normal since everything else appeared fine. At this point we did a little research on PSC but put it at the back of our minds since I had been feeling good and the doctor did not seem concerned.

In December of 2014, we were blessed to find out I was pregnant and expecting a baby in August.  I continued to run my liver bloodwork to keep an eye on things. During the course of my pregnancy, all of my liver enzymes normalized.  I ended up consulting with a new Gastro during my pregnancy and she indicated that they often see this in pregnant women with autoimmune diseases and that she’d like to figure out what’s going on after I had the baby.

The rest of the pregnancy continued to go smoothly and in August 2015 I gave birth to an amazing little boy. As suspected, my liver blood work jumped back up and I was sent in for another MRI and biopsy in November 2015. Once again, I had my doctor stumped since everything came back normal. We decided the next step was to go see a specialist at Rochester Mayo to get answers.

After more blood work and scans, we headed to Mayo in February 2016. During my initial consultation it was suspected that I had PSC. They wanted to run some more blood tests (p-ANCA and c-ANCA) to confirm and have me consult with an additional doctor the following day. The test results came back positive for PSC so I was officially diagnosed.

Not much changed after the diagnosis for me. There is a medication (Ursodiol) that sometimes helps lower liver enzymes of PSC patients, but since I was still nursing my son we decided to wait on trying it.

Even though there is no cure for PSC at this time, all the doctors I’ve worked with have been extremely optimistic that I can live a full life. I decided then that I will live my life to the fullest no matter what gets thrown my way.

Thanks for joining me on this journey.

~Liver Life to the Fullest

What is PSC?

Like most people, I had no idea what Primary Sclerosing Cholangitis was until a doctor informed me I might have it, but he wasn’t quite sure (more on this and my diagnosis in the next post). I want to spend a few minutes sharing what PSC is to help answer some of the common questions.

PSC is a rare chronic liver condition that predominantly affects older men – I guess I like to break the mold. Essentially the bile ducts inside and outside the liver become inflamed which leads to scarring, narrowing of the ducts and eventually blockages. This damages the liver which can potentially lead to liver failure and the need to have a transplant.

Cause
There is no known cause of PSC at this time but it is often found in individuals with Ulcerative Colitis. (My journey actually started with a diagnosis of Ulcerative Proctitis which is a less severe form of UC.)

And no – PSC is not caused by drinking alcohol. My family and friends reading this are smiling because they know how little alcohol I drank pre-diagnosis that it’s a joke.  🙂

Symptoms
Common symptoms of PSC include itching, fatigue, nausea, vomiting, insomnia, abnormal stool/urine, etc.  I had not been experiencing any of these symptom upon my diagnosis and until September 2016.

Cure
Unfortunately, there is no cure for PSC at this time, but there are medications and surgical options to help alleviate symptoms if needed. One of those surgeries can involve having a stent inserted in the bile ducts to provide relief. However, even if you can manage the symptoms, PSC can sometimes continue to damage the liver to the point where a transplant is needed.  And even if you get a transplant, it’s possible PSC can recur. The good news is there are some great trials being conducted currently and a number of doctors are hopeful a cure can be found.

Dietary Restrictions
There are currently no dietary restrictions suggested for PSC patients. However, there have been a variety of one-off success stories of dietary changes that have lead to improvement in symptoms and slowing progression of the disease. I’m currently testing out a gluten free diet to see if that helps with some of my recurring symptoms. My thought is that it can’t hurt to try.

When people find out I have a liver condition, the most common question I get is, “Can you drink alcohol?”  It’s typically recommended that anyone with a liver condition shouldn’t drink alcohol, so I don’t.  A number of my doctors have indicated that a drink on a special occasion wouldn’t hurt, but why risk it if I don’t need to?

Summary
If I’ve confused you or you want to learn more, here’s a two-minute PSC overview video I found helpful and a PSC website to get you started.

 

That’s PSC. For those of you stressing out thinking that I need a liver transplant ASAP – don’t worry!  I’m in the very early stages of PSC and my liver is still healthy. The condition generally progresses slowly and in some cases, not at all.  The good news is, many PSC patients live long healthy lives with PSC and/or post-liver transplant.

While living with PSC may really stink at times, it isn’t anything I can’t handle because I know God is in control.

Thanks for joining me on this journey.

~Liver Life to the Fullest

Why a Blog?

If you were you ask my family, friends, coworkers, and myself (even just a few months ago), they would all tell you I am not a writer and I’m not very outspoken. I’ve never been one to journal and have always dreaded large writing projects at school or work. So you may be asking yourself, “Why is she starting a blog?”

The Short Answer:
God placed this blog on my heart to share my PSC journey with others.

The Long Answer:
I was recently diagnosed with a rare chronic liver condition called Primary Sclerosing Cholangitis (or PSC for short). Instead of giving in to my writing fears, apprehensions, and urges to run away, I want to bring as much good out of my diagnosis as possible by sharing my story. In thinking through the idea of a blog, there are three main reasons I’m starting this adventure:

  • To Increase PSC Awareness/Education
    When most people learn of a new ailment or diagnosis they often turn to the internet for some reassurance that they’re not alone and/or look for guidance on what to expect. This is true of me (and my family) when we first learned I had PSC. I know, I know… all doctors tell you not to read about diseases on the internet… In my case it really helped me understand the condition better and learn a little about what to expect or what questions to ask (I’ll cover some of this info in another post for those of you not familiar with PSC).

    Fortunately there’s some great PSC resources/forums/foundations already started.  One thing that helped me the most was reading other PSCers’ stories but I often found they were from people who were at the stage of waiting for a liver transplant or post-transplant. (Disclaimer: I’m currently in the early stages – more details on my journey later.) My hope is that this blog can provide a glimpse of what it’s like living with a chronic condition from the early stages to wherever it may lead.

    If sharing my story helps one person learning of their PSC diagnosis or encourages someone to consider being an organ donor, all this writing will be worth it.
  • To Update My Family & Friends of My Journey
    Many of you reading this may be freaking out a little thinking, “How did I not know she was sick?!” Mainly because it’s a newer diagnosis, I’ve primarily been feeling good (more on that later), often there are not a lot of external signs with PSC, and I’ve gotten good at pushing through some of the symptoms.

    I’m hopeful this blog will be a good way to stay connected with my support system and provide updates in one place as they happen.
  • For My Own Internal Processing
    I’ve had some time to process what my diagnosis means, but have also learned my thoughts and feelings about PSC can change in an instant. Every person with the condition has a unique experience and no two PSCers have the same story. I’ll be using this blog to help reflect on my journey and what it means for the future.   

    Additionally, living with this chronic condition means countless doctor visits, blood draws, hospital stays, Radiology scans, etc. – all of which can quickly become a blur and hard to explain with new care providers.  This blog will be a good resource to keep track of key events in my PSC life.

 

In the next few posts I will give you a little background on PSC and walk you through my PSC story starting at the beginning. Forewarning: Those posts may be a little long as we have some catching up to do. Once I’m caught up with posting all the details, my goal will be to post when key updates occur.

Thanks for joining me on this journey.

~Liver Life to the Fullest