I remember how confusing and frustrating it was for you when you were being sent for all those tests and taking medications. I’m so thankful you have gotten some answers despite poor communication from your doctors, and that your health has stabilized. You deal with all this with such peace and grace.
Great to hear your story. I am waiting to have my appointment with the hepatologist in May. My primary physician thinks I might have PSC. I also have Celiacs as well. I am like you I definitely notice when I eat too much dairy or really rich food that my liver can start to hurt. Lots of chicken and vegetables for me! 😊
I’m so sorry to hear this. I only lived with it for 6 years undiagnosed and 12 years since then. Major surgery and horrible medication reactions. Unfortunately I live in the US and had to pay for most of it.
Eu tenho chron e colangite esclerosante primária em estagio inicial, tenho 30 anos, sou mulher e descobri esse ano. Eu parei com o leite, fiz um tratamento para SIBO e to tomando probióticos, ainda não uso remédios para Chron e PSC mas meus exames melhoraram em 6 meses com mudanças alimentares e redução do estresse
I’m looking forward to seeing your recipes. I have a house full of very picky eaters ( cheese and pretzel eaters) but I am the one who cannot eat certain things so I end up having to make 3-4 different meal options to feed everyone… I’ll be interested to see if your own preferences will satisfy all of us LOL!
Thanks for sharing! My husband has PSC and it's such a rare liver disease it seems, I don't hear about anyone else having it. He has to get a colonoscopy and MRI every year which is no fun. Out of curiosity, are your liver numbers in the "normal range" since being on your medication?
Idk where you live, Stacy, but the history of the diagnosis and why it has been slow to be diagnosed in America is really interesting. Part of it includes intense war-time rationing in England and the observation of improved health in kids sick with unknown illness (celiac).
ohh man why are doctor's some of the worst communicators.. I mean I get they don't want to scare us with a bunch of stuff that we probably don't have but give us a clue about what is going on. I had an ERCP after I had Sam.. I had gallstones and needed to have my gallbladder out but my c-section was still open and infected (that was a whole thing).. so they tried to make me wait until it had healed before removing my gallbladder. Since I waited so long several of the gallstones had gotten out of my gallbladder (very uncommon). So I had my gallbladder out and felt better. Until the 4th of July when I ate a hamburger. I went back to my doctor who found bile in my urine and said you either have a leak from your gallbladder removal or a blockage. He sent me home but said I will contact you later today. A couple of hours later he said I have a bed for you at the hospital you need to stay there overnight until they can do an ERCP and see what is going on. So they had to go in and see if there was a leak which there wasn't but they did find 4 gallstones that got out of my gallbladder and stuck in my common bile duct near my pancreas. I looked so gross my skin was deep yellow along w/ my eyes. I had to stay several days over night to make sure all of my levels came back down. Meanwhile I had a 2 month old that I just wanted to be home with. I haven't had to do a colonoscopy but I have heard the prep is no fun!! I think it is funny you said hmm maybe I should have told people about this. I feel like that is so common.. you just get use to how something is and you assume it is normal. Glad you haven't had any major flare ups since your diagnosis!
We are fearfully and wonderfully made. Our God is amazing
Yes!
I remember how confusing and frustrating it was for you when you were being sent for all those tests and taking medications. I’m so thankful you have gotten some answers despite poor communication from your doctors, and that your health has stabilized. You deal with all this with such peace and grace.
I’m a Gastroenterology physician assistant. Thank you for sharing your story.
So interesting!
Great to hear your story. I am waiting to have my appointment with the hepatologist in May. My primary physician thinks I might have PSC. I also have Celiacs as well. I am like you I definitely notice when I eat too much dairy or really rich food that my liver can start to hurt. Lots of chicken and vegetables for me! 😊
I’m so sorry to hear this. I only lived with it for 6 years undiagnosed and 12 years since then. Major surgery and horrible medication reactions. Unfortunately I live in the US and had to pay for most of it.
That rough, I'm so thankful for our healthcare here, it may be slow but at least we don't have to pay for much!
Eu tenho chron e colangite esclerosante primária em estagio inicial, tenho 30 anos, sou mulher e descobri esse ano. Eu parei com o leite, fiz um tratamento para SIBO e to tomando probióticos, ainda não uso remédios para Chron e PSC mas meus exames melhoraram em 6 meses com mudanças alimentares e redução do estresse
I’m looking forward to seeing your recipes. I have a house full of very picky eaters ( cheese and pretzel eaters) but I am the one who cannot eat certain things so I end up having to make 3-4 different meal options to feed everyone… I’ll be interested to see if your own preferences will satisfy all of us LOL!
Oh that would be a struggle to try to make so many different meals!
Thanks for sharing! My husband has PSC and it's such a rare liver disease it seems, I don't hear about anyone else having it. He has to get a colonoscopy and MRI every year which is no fun. Out of curiosity, are your liver numbers in the "normal range" since being on your medication?
Wow, crazy that he has it too! Yes, my numbers have been in the normal range for the last few years!
I also hate Mansfield Park 😂
So many of my friends have celiac. It really seems to have exploded over the last 10 years.
Yes, I don't know how much the disease is on the rise and how much there is just more awareness and they are actually testing for it.
Idk where you live, Stacy, but the history of the diagnosis and why it has been slow to be diagnosed in America is really interesting. Part of it includes intense war-time rationing in England and the observation of improved health in kids sick with unknown illness (celiac).
Are you taking ursidol medicine 💊 have you notice weight gain
I am taking Ursodiol but have not noticed any weight gain as a result.
ohh man why are doctor's some of the worst communicators.. I mean I get they don't want to scare us with a bunch of stuff that we probably don't have but give us a clue about what is going on. I had an ERCP after I had Sam.. I had gallstones and needed to have my gallbladder out but my c-section was still open and infected (that was a whole thing).. so they tried to make me wait until it had healed before removing my gallbladder. Since I waited so long several of the gallstones had gotten out of my gallbladder (very uncommon). So I had my gallbladder out and felt better. Until the 4th of July when I ate a hamburger. I went back to my doctor who found bile in my urine and said you either have a leak from your gallbladder removal or a blockage. He sent me home but said I will contact you later today. A couple of hours later he said I have a bed for you at the hospital you need to stay there overnight until they can do an ERCP and see what is going on. So they had to go in and see if there was a leak which there wasn't but they did find 4 gallstones that got out of my gallbladder and stuck in my common bile duct near my pancreas. I looked so gross my skin was deep yellow along w/ my eyes. I had to stay several days over night to make sure all of my levels came back down. Meanwhile I had a 2 month old that I just wanted to be home with.
I haven't had to do a colonoscopy but I have heard the prep is no fun!! I think it is funny you said hmm maybe I should have told people about this. I feel like that is so common.. you just get use to how something is and you assume it is normal. Glad you haven't had any major flare ups since your diagnosis!
Oh wow, Lindsay, I can't imagine going through all that, never mind with a two month old waiting for you at home.