Good news, but not out of the woods!
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Nathalie….you have learned much and have advocated for yourself in an examplary manner. You might want to share some of your knowledge with patients suffering from either colitis, or psc. You would be a gift to others.
Tons of good wishes coming your way,
MarionI am so blessed to have you all in my life, so is Terry. Don was wonderful for him! If Don ever needs someone to talk to, Terry would love it! He’s not in his shoes of course, but he felt the fears, uncertainties and the deep love as Don has for you Jamie! I will stick around, I need to keep up on all of you! My blessed gift of Angels here on this board!
I will say it again, the spot on my right lobe was there before I left for the Mayo. After many prayers, prayer circles and deeply having the faith that I would be cured, it was gone! The docs saw it on the previous tests, they couldn’t find it on theirs! Of course, medical/scientific explanation was sought after, but they can’t and won’t change what the miracle is, was and will be! It’s hard to imagine that in some of your shoes, especially those who have recurrent disease or late stages. But, try to remember the good things you will learn along your journey, focus on them, believe and keep faith for healing! Healing comes in many forms, emotional, spiritual and physical! It’s easy for me to say this, I have felt the fears of the unknown to a certain extent and I came out clean. Know I am praying for you all! You are all my miracles and hope! Without you I couldn’t have made it this far, I would have turned and ran away, hiding my head in the sand. You gave me courage and strength! I will be yours!
I am so glad that the good news was uplifting to you all, it was to us too. I will be taking extra good care of my liver and GI tract as things can lead to others. Yes Marions, it is not a positive that I will get CC, it’s only a chance. As I have said, I hope that I can be of help to the medical community for you and others in detecting certain percursors that might lead to CC. I have a couple of the warning signs, we will watch them very closely!
I have read that 70% of people with UC develops PSC, and yes, 1/3 of people with PSC will go on to develop CC and 29-46% go on to develop colon cancer. If they can catch anything early, damage, blockages, strictures, polyps or blood work “hints”, situations can be caught early enough before progressing to CC or colon cancer, or at least catching things early enough to possibly cure it. Hope for the future?
So many people don’t have any symptoms until it’s progressed, but I am a firm believer that you go with your gut! If I have any symptoms or signs that something is going wrong with my body, I will be there on my docs doorstep! I will be having frequent tests, blood, imaging of sorts, including the scopes. I had to fight for a year to get where I am now, advocating and begging, pushing and forcing my PCP to do work ups, images and blood tests. Sending to a variety of specialists. I was fortunate enough to feel something was wrong and I pushed until they got on the right track.
I will be a shoulder, an ear, arms to hold you and bended knees to pray for you! I can help research or read or gather information for you. Anytime you need to call on me, please do! It is very precious to meet in person, maybe one day we can plan a gathering! A reunion! When we hang on to one another we can fly!
God Bless You!
I love you all!
NathalieHi Nathalie;
It was such a blessing meeting you and Terry. I am so thankful that your tests results were so positive. Thank God you can just be an “honorary member” of our group! You still need to take good care of your liver and stay healthly. We will keep in touch. Take care of yourself, say hello to Terry from Don and I, and God Bless,
JamieNathalie,
What great news for you. I am hoping the things continue to go well for you in the future. Good luck to you and keep us posted as to your progress.
Darla
Nathalie….Congratulations. Only once before do I remember a situation on this board, in where a CC had been suspected and further testing did not confirm the diagnoses. I am very happy for you and more so I am thrilled to hear about the incredible support you have received from Jamie. Although, as you say: you are not out of the woods I believe, that the forest has receded significantly. As far as I know and please, correct me if you would PSC can progress to CC but, certainly, does not always. I had been told that “possibly” 1/3 of PSC patients will contract bile duct cancer although, I don’t know of any statistics in that regard. I am hoping that you will respond to the medications and the colitis will be a momentary flair up. Also, I have been told of several Colitis support groups on the internet.
All my best wishes,
MarionYEAH! We love good news and how wonderful that you and Jamie got to meet. I tell ya there is nothing like meeting someone from this Board! Keep up the good work!!!
My sweet friends and family! Thank you for all the support you have given me through these trying times! God Bless you all!
I had a visit up at the Mayo in Rochester last week, 5 days of testing and was also entered into a research study for Cholangio! I need to say, if it wouldn’t have been for Jamie, I would have probably lost my mind there! Thank you Jamie for being there for me during your tough times, you and your wonderful husband are in our prayers and thoughts! I hope we continue to talk and see one another again! Soon!
Through all the testing they did, blood work, imaging and the EUS, they did not find any cancer! I was thrilled at this, although the ERCP would have been of better use for the visual of the smaller vessels, it is ok.
This is what we have learned, and it is posted here in other areas about the connections between certain diseases and Cholangiocarcinoma. I do have Ulcerative Colitis and they believe the beginning of Primary Schlerosing Cholangitis. Now my liver enzymes were normal except for the Alk. Phos., they were slightly elevated. We’ll keep close watch on this part.
Because of these conditions and the likely hood of developing CC, maybe we will find a breakthrough! A test to be able to detect it sooner than later! Either way we will stay positive and hope for the best, remembering even through the toughest times, there is positive impacts! Keep the good, forget the bad and be grateful for what we do have is a good strategy for us.
God bless you all! You are all in my prayers and in my thoughts! If ever I can be of assistance or help of any kind, please feel free to contact me. A prayer, a shoulder or a sounding board… Whatever I can do to help!
Hugs n Luvs,
Nathalie
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