Your story is common. I find MOST OF US 'PSC'rs' need to know we are NOT DYING, we are actually NORMAL, we're NOT the first and we're NOT going to be the last. We are special and need to feel and treat ourselves special.
I am sorry for your diagnosis but in some ways I feel we are luckier than most. Tons of people get sick for the FIRST TIME later in life and give up. WE have been given an opportunity to live life better, healthier, longer as a result and to learn how the body works and to treat it accordingly.
You are welcome to email me offline. I have shared on this site but there are a few that don't believe clean water and food make a difference. People are looking for a magic pill to fix them. I don't believe that pill ever did or ever will exist. People will try to disprove any and everything KNOWING for a fact their PILLS have problems and the damage they cause.
I'm interested in curing myself and that takes work. MIND, BODY and SPIRIT work. You are in control. It is a journey that takes awareness, learning, loving and getting back to it when you stray. I believe WE CAN HEAL SCAR TISSUE and keep the inflammatory process DOWN when we put in the work and live life kinder, with more spirituality and being 'of-service.'
Anyone can email me offline. You need to tell me about yourself and know I AM NOT A DOCTOR. Most of us here are not doctors. I DON'T make any claims what is helping me will help others. We are all different and everything needs to be discussed with your doctors. You may have to state 'off the record' to discuss some of these things with your doctor. I can share what I have learned and applied to myself.
Thank you so much Mona for your email address I will definently email you. you're post is so true. WE can heal our mind, body, & spirit it takes work but its a good lifestyle change for the better ..... You are so inspirational...
I had UC when I was a teenager, then was diagnosed with PSC much later in my fifties. I had colon cancer at 35 and then a
j-pouch cancer at 52. When I had UC, there were no medications that I could take to help me. I was allergic to what I could have taken. Now I think there are more medications out there for this disease. So in my situation, the UC worsened until the colon was removed. I feel much better today than I did suffering from UC.
Danielle - I have had Ulcerative Colitis for 24 years now and was just recently diagnosed with PSC. I guess (according to my GI) that most PSC patients start with UC or Crohns.
I've been told to manage my PSC that I need to just continue what I was doing with UC. Stay away from stuff that makes my UC flare up and continue the meds I'm taking. I currently control the UC with my diet and Asacol, and now I'm on Ursodial for the PSC.
Besides diet, changing your outlook on life (in my case) seemed to help. Trying not to get stressed out about the little things and just letting stuff that is not important go.
As for diets, well for me staying away from caffiene, watermelon (for some strange reason), very citrusy things like oranges and grapefruits, alcohol (occasional drink here and there), milk, ice cream and raw vegetables (especially corn) seems to help. I went from a point where several years ago they wanted to remove my colon to being down to less than a one on the severity scale.
Mona, I also wish to get in contact with you.
My story is I was diagnosed back in 2007 with UC with PSC. I received 2 pints of blood due to a bad flare from the UC back in 2009. In 2017 I had extreme pain, I had an ERCP due to the bile ducts closing. After I went home I was in agony for 2 days. Went back to ER, I had a bad infection & developed sepsis. One month after I got the flu, I got sepsis again. I had an MRCP about a month ago, the results say atrophy with underlying cirrhosis. Dr called me about 2 weeks ago & said I’m in between stage 3 & stage 4. He actually recommended I go talk to the transplant Dr but I want to wait. He said we might do an ERCP, so hopefully he calls me tomorrow. Anyway, 2 weeks ago, I had discomfort in my liver, 1 week ago had fever for only 1 day & yesterday & today again. Hope to hear from you.
Ana
Danielle, by all means, please ask questions. There are quite a few members who have both psc and either colitis or churns.
Having one is hard enough to deal with, but two can be tougher.
I had colitis in 2006, resulting in a pouch. The psc came in 2013. Both were a challenge, but made easier by having one at a time. But I am not able to advise about the duality of them.
What I learned is to stay flexible, think long term while dealing with the daily stuff.
With psc, I’d highly encourage you to get a hepatologist at a transplant center if you can. Hepatologists know the liver much better than a regular GI.
MimiLuna,
I’d encourage you to go ahead and get the transplant evaluation. It’s good to go ahead and go through all the testing and be approved and listed. If you get a call and you are not ready you can just pass and tell them to go to the next person. It would be better to be listed and not need one immediately than to need the transplant and you aren’t approved and on the list. Just something to consider. I’m sorry you are having such a difficult time.
Be encouraged that a transplant is not something to dread. I had great peace going into surgery and feel so much better now. It’s literally giving you a new life in a sense. I know we each have to make our own decision on whether to proceed or not, but I just want to tell you that there is hope and that it is something I would encourage you to strongly consider. Best wishes.
I had no idea that you can pass, it’s intimidating taking the first step towards a transplant. I’m hoping that by doing a liver detox by juices, my liver will get better. Thank you so much Mark
You need to understand that liver detox methods with juices, etc. will NOT cure PSC. There are many false groups out there that are pushing such methods, but these in some cases will cause the liver damage to worsen. I encourage you to accept the counsel and advice of your hepatologist. It may be the saving of your life. Best wishes.