Please share your story of hope. Here’s mine!
i know when you first get diagnosed its terrifying. I was very sick for many years. Young and skinny so nobody seemed to understand the pain and fear I was experiencing. bleeding inside, it hurt to eat from the top to the bottom, I was afraid to leave the house because I might poop myself in public, I could not hold in the 20+ trips to the toilet. I was in pain PAINPAIN constantly, joints hurt, teeth turned grey, hair fell out, weight dropped into the 90’s, I could barely stay awake because of fatigue but I could not sleep because of pain and sweating and itching.
I had just gotten married and my husband became my caretaker. Sad,.
I moved to Japan in 2007. To die there.
But I kept suffering and living. Then I became pregnant. I had to live for my unborn baby, which the dr told me I was too sick to keep.
The DR told me I had a terrible case of UC, and I needed TPN. but I couldnt afford it at 300$ a day. That Dr laughed at me and said “I cant fix you, I fix bodies, you are a social problem and I cant fix that.”
So I took my health into my own hands. The internet was filled with people complaining and hurting and dying, no good stories there. I found a book. “Listen to your Gut” and I started following that. I found and tried the SCD diet. I got better! I gained weight, and I kept that baby. His name is Nathan and He’s 11 now.
I ended up sick again after a bout with depression and panic disorder and my second baby being born. I was diagnosed with PSC, the DR said he was so so sorry, and that there was nothing he could do. But I knew there was lots I could do. I kept going. I got diagnosed with cancer. I kept looking, I went back on SCD, and I improved my life in every way I could. I moved to the mountains, I found love, i had two more kids, i changed jobs, many things. most important I found God and I found real love.
Now I am free from Depression, Agorophobia, Cancer (they were going to remove my bowel but I got better with just lifestyle changes), my PSC and Chron’s disease are sleeping. I live a totally normal active wonderful amazing life now!! Thanks to my God and thanks to the things I found to help me heal.
I would tell myself at the beginning:
-It won’t be like this forever. Yes you are suffering. You will learn to be so strong from it! and you won’t suffer forever. Keep living. Keep looking. you have a future ahead of you so beautiful you would never believe or imagine it.
Thanks for sharing your story.
While we know that not everyone’s story has a happy ending, we like hearing success stories.
That is an incredible story and it makes me feel hopeful and appreciative because I don’t have it that bad!
Thanks for sharing
Your’s is an amazing story. It’s wonderful what can happen when we take charge of our issues. Especially when God is included.
I had a follow up last Friday and got some good news. I had understood that I had stage 3 fibrosis, bordering on stage 4. I never really got a definitive answer as to how bad the damage was, but for the last year everyday felt as though I’ve had loaded gun in my face. I used to wake up wondering when my skin would turn yellow, when symptoms were going to get bad and my liver begin failing etc. Following my most recent MRI, there has been no increased damage to my liver and it looks like I only have stage 2 fibrosis. Specialist said I’m a very long way from needing a transplant (if ever). I can’t even describe the relief. Much less anxious and feeling hopeful for the first time in a long time. A year of strict dieting and exercise seems to have paid off. I hope you’re all doing well, that you’re happy, and as stress free as possible.
Glad to hear your good news! I hope you continue to have continued improved health for many years to come. Keep up the good work.
Hi, I’m from Poland (sorry for my english ;)) and I’m still under diagnosis but most likely PSC member looking at finally made MRI (you can’timagine how hard was to get MRI in Poland). I’m 44 this year and I had sypmtoms (bad blood tests and stomach pains) already being 16 yrs old. Have visited 7 different specialist including herbal specialist before finally finding one doctor that made full diagnostic panel. My fibrosis a year ago was F1. I’m taking now only UDCA and some herbs. Just wanted to tell you that sometimes it could be really a long way before liver get’s bad. I had GGTP results few times of 1018 and ALT 480 ,AST 440 in the past and great pains from time to time every few years. Got much better 12 years ago when I took full diet and herbal treatment for like 1 year given by herbal specialist and pracitcing anestesiologist doctor at the same time. Now I have tried to take UDCA for last couple of months but it seems only to help partially so I will talk with my doctor if it’s ok to resign for a while from UDCA come back to herbs in full and see with the same diagnostic tools how does it work. Generally speaking at least in my condition it looks like it has sesonal effects (inflamations comes ususally in early spring time) and it’s connected to stres and chaos in life. I’m much better when I’m able to keep calm and reasonably balanced life.
Your story is a source for me and I’m sure others. I understand that drive to fight for your life especially when a child is involved. I will pray for your continued health. I’m on the SCD diet as well. I believe we have to do everything we can to fight for our lives. Thank you for sharing!