Friday, March 15, 2013

Primary Biliary Cirrhosis. (Actually now it's Primary Sclerosing Cholangitis.)

Dear Friends,

It is hard to put into words what I’m feeling right now. Scared, confused, angry, depressed, hopeless, hopeful… I keep going over and over what my doctor said to me this morning. I have Primary Biliary Cirrhosis. This is a very rare disease that is connected with my Ulcerative Colitis. Only about 2% of UC patients develop this disease. It is incurable, and right now there are no known treatments for it.

To explain this disease a little bit… basically the ducts (tubes) coming out of my liver are inflamed and could possibly have some blockage. This would explain the pain I felt a couple weeks ago. The pain has subsided, but the inflammation is still there. This is a progressive chronic disease that could (and most likely will) spread to my entire liver. If this occurs, then the only cure would be a liver transplant. I asked my doctor how likely it is that this would happen, and he told me I might not need a transplant, but usually people who have this disease eventually need to get it. There is also no timeline for this disease. It is usually slow-progressing, but the last time my doctor told a patient that, the patient needed a transplant 6 months later. Needless to say, it’s hard to know what is going to happen.

The plan right now is for me to get an endoscopy next week so they can check out what’s actually going on. I’m at a greater risk for cancer because of this inflammation, so they want to make sure there’s no cancer in there now (please be praying that there’s not – I don’t think I could handle something like that also happening). After that I will need to do a follow-up with my doctor, and then in the next few months I should be set up to visit the Mayo Clinic. I feel very blessed right now to be living in Minnesota and only an hour away from the Clinic. From what I’ve heard it sounds like they have some experimental treatments right now and they have programs for exactly the disease I’m dealing with. What a blessing.

I just heard the news this morning, and I already feel so supported by everyone around me. To all of you who have offered your encouragement and prayers, I feel utterly grateful. I am beyond words – I can’t tell you what it means to have a support system like all of you. I put in my two week’s notice at work – I know that some of you may think that this was a rash decision, but I know it is for the best. I can’t spend my precious time and energy on that job when I should be focusing on staying sane so I can stay as healthy as I can. My emotional and mental health really does play a factor in my physical health. I know I’m going to go crazy not working, but thankfully I have my final online class to work on, so that will keep me busy for at least the next couple of months.

My parents are flying in to see me tomorrow, and I’m so grateful for that. I’m so excited to see them. Getting the news like I did today made it so much harder to be away from my family. Please don’t misunderstand me, though. I have the absolute best husband in the world. He has been so caring, so compassionate, so loving… I don’t know what I would do without him. He is my rock and my best friend. I feel so awful putting him through this, but I am so grateful for his patience and understanding. If any of you see him or talk to him, please let him know how great he is, because I can’t tell him enough. God knew what He was doing when He gave me that man.

I know that God is in control. I know that since the beginning of time He has known exactly what is going to happen with me, and He knows how He will be glorified in everything. If I’m being totally honest, I’m having trouble not being angry right now about the fact that I not only have one chronic illness (UC), but now I have a second. Both could require major surgeries in the future and could also make me very sick. It’s so true that man plans his life, but the Lord orders his steps. Before all of this started happening I was hoping to go to grad school and get my Master’s. It’s looking now like that will be put on hold indefinitely so Eric and I can focus on what’s really important – our relationship and building our family. Please pray for wisdom as we try to figure out the direction of our lives at this point. I have no idea where we’re going to go from here, but I’m desperately trying to remember that the Lord is in control and He knows what He’s doing. It’s been a whirlwind of events lately, and I’m really just wanting everything to slow down. I don’t think it’s going to, but I can hope, right?

Praise God that He has given me good health thus far – my UC isn't active right now, and that is something to definitely praise the Lord for. It has spread to my entire colon now instead of just affecting part of it, but the fact that it is dormant at the moment is huge. Please pray that even though I have all this stress that it remains in that state.

Thank you all again for your prayers, thoughts, and encouragement. You all mean so much to me, and I am grateful for each and every one of you. I covet your continued prayers, though. I need them more than words can say. I need the Lord’s presence and comfort more than ever right now, but I’m struggling to open my Bible because I don’t even know how to feel towards God right now. Truly. Call me a heathen, tell me I need to have more faith… I am simply struggling not to be angry with Him right now and to draw near to Him like I know I need to.

For those of you who have read through this long post, thank you for sticking it through. You’re a true friend, and I’m grateful for you.


  1. Bethany,

    It's okay to be angry. God never tells us we can't be upset and confused and frustrated when He places us in bitter circumstances. To be blunt, you're faith in God is at its strongest when you choose to remember Him and lay at his feet in the midst of this sad and confusing time. Faith is what makes us cling to Christ when it doesn't make sense to. Continue to do that, NO matter what news comes your way in the future. You most definitely are in all of our prayers. Your openness and honesty is an encouragement and testimony of who you are. Please continue to keep all of us posted, and to let us know how we can be better serving to you and your husband. Allow us to serve you as the body of Christ should. I pray that the possible treatments at the Mayo Clinic will be successful for you, and that a transplant will not be in your future. Continue to lean on those around you, and really enjoy your family! I hope you have tons of fun with them.

    I truly mean it when i say, may God bless you. Thank you for the update. We are praying and we all love you.


    1. Thank you so much for your encouragement. To be honest, I'm not exactly sure which "KB" this is - I know a couple people with those initials. :) But thanks again for the encouragement. It is such a blessing to hear these things from everyone.

  2. Hey Bethany,

    Thank you so much for sharing this. I cannot imagine what it feels like to confront something so difficult, especially while already dealing with a chronic illness. You are in our prayers and keep us posted on how things progress and how we can pray specifically as this journey continues. I think it's really wise that you're focusing on your health right now. I'll pray you continue to feel the Lord's presence and guidance as you move forward. - Bethany Johnson

    1. Thank you, Bethany. I will definitely keep you all posted on what's going on. Your encouragement means the world to me. Praying for you guys from across the pond. :)

  3. Bethany,
    I have been praying since this morning without really knowing the severity of your condition, when I first saw the posts from you and your family. Thank you for sharing.
    Though we only met once at Michael & Shelley's wedding, I still consider you family and I truly care. If you don't mind I will add you to our church prayer chain.
    I am claiming Psalm 107:19-20 for you.
    Love and prayers,
    Christine Merwarth

    1. Thanks, Christine. You have been incredibly encouraging through all of this. I am totally okay with you putting me on your prayer chain. I can use all the prayer I can get at this point, if nothing else but for peace and comfort. A miracle would be great too... haha. Thanks again - I can't express how much it means to me.

  4. I love you. See you tomorrow.

  5. Bethany,
    I know it has been a long time since we talked, but I want you to know I am praying for you too! It is so hard to trust God in these times. It is so hard to see what He is doing or why He is putting us through these trials. I admire the way that you look toward His glory through this time. I pray peace for you, that God will remind you again and again of His continuing care and love through this awful time. I pray faith and hope for you, even though it seems impossible. I pray that Our God will use your story through this illness to bless others and grow His kingdom.
    Barb Nettles

  6. Bethany, your transparency is honest, real and refreshing!!...YAY for you!!!! :) Keep blogging, journaling, crying, screaming, laughing, and crying some more. You already know that God understands. I am predicting that an infinite number of people will be so touched and encouraged by your journey that the ripple effect may shake MN!! Love you sweet girl. Rene'

  7. Bethany, your transparency is honest, real and refreshing! YAY for you!!! Keep blogging, praying, screaming, crying, wondering, and crying some more; you already know that God understands. I predict that your journey through this will infinitely encourage and inspire so many that the ripple effect may shake MN!! :) Praying for strength sweet one!! Hugs, Rene' N.

  8. Hey my sister, (I like calling you sister) thank you for the updates and the time and energy and thoughtfulness and honesty that requires. I am so glad to hear your parents are in town, too. What an additional comfort (yeah to Eric for being an excellent husband - must run in his family... : ) We are praying for your recovery. Love Heather Pegors


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