Hi all,
I was diagnosed with small duct PSC late December 2018. It was discovered because put on 60lbs in less than 5 months and my family Dr was trying to determine if there was something wrong with my thyroid, there isn’t. Still don’t have a reason for the out of control weight gain. The bloodwork however pointed to a liver condition which resulted in seeing a GI specialist. Since that time, I have been pouring over everything I can find on line and reading all posts here. There is so very little information available on the small duct side.
Like many chronic illnesses, there seems to be no real answer; your dying, not dying, you have 2-12 years, only treatment is a liver transplant but you can’t have that until you are at deaths door. In Canada, my GI specialist advises I can’t have a transplant after 65. Then there is the whole, you will live a full normal life if you can remain healthy. Remaining healthy, sure, how!? No roadmap to that either, which brings me to my frustrating position - getting some real, helpful information.
The Drs I have, have added to my endless confusion, my GI specialist dropped the diagnosis on me, handed me a series of blood work to be done every couple months for 6 months and come back to see me orders (see him in May) with no other info other than the transplant cure but not there yet and no transplant over 65 lecture. I am 55 now. My family Dr tells me that she knows lots of folks with PSC and I am being ridiculous thinking this might kill me because most people with PSC live a full normal life with no symptoms at all. Then sends me to a personal trainer and dietician that recommends a full on bodybuilding program with lots of protein shakes and no fruit cause that will speed my liver problems. Then when I am completely exhausted trying to keep up with high energy workouts, my GP sends me to see an internal medicine specialist who tells me the other Drs are speeding my trip to the grave because the only way to get and remain healthy is to become full on vegan. Only a whole foods, plant-based diet will work with my liver disease.
So now here I am overweight, broken, constantly exhausted and ranting like a crazy person. Do any of you, who are living with all this, have a real recommendation on best eating plan and exercise? I am so incredibly confused and frustrated.
Cheers,
Terri
Been there done that. I know exactly how you feel and just a diagnosis is not a death sentence. I was diagnosed at 16 years old and didn’t start experiencing symptoms until late 2017 early 2018. I’m now in liver failure on transplant list can’t work but I am making the best of it while I can. There are plenty of sensible diets online for ppl with PSC. I’m even more restricted because of my ileostomy. As for working out just listen to your body. If your doing too much it will let you know and sounds like it is. Try something a little easier. Lighter weights and cardio. Try to cook at home more using fresh items. Sure you can enjoy that greasy fast food burger now and again. Seems overwhelming at first and Everyone has their opinion on what’s right, which seems to be those who have Zero experience in dealing with having the disease. That is just my belief to eat decent healthy meals which can be easily done without feeling your sacrificing taste and enjoyment of it. Just look some up and you can mix and match as you please. Hope this helps just sort of ranting but I think it’s something we all do haha were here to listen and help the best we can. It’s nice sometimes to vent to a group of ppl who know Exactly what Your going through. Take a deep breath, relax and stay strong. Hope this helps somehow not very good at this kind of thing.
1 Like
Thank you, yes! Just having put it out there was like take a breath! Cheers, fingers crossed for you on the transplant.
1 Like
So sorry you’re going through this. I’ve been on the rollercoaster almost 18 years. There are no definitive answers and no right and wrong on a broad scale. You have to listen to what your body tells you. I started a very intensive exercise program last year after having not exercised for a few years besides walking and my body reacted letting me know it was not the best choice. I was very nauseous after each session and just exhausted. It was too hard on my body and I could tell my liver was not happy. I felt sick a lot of the time. As for my diet it hasn’t always been the best but I try. For me I have learned moderate exercise (I mainly walk) and really watch sugar intake. Maybe start a food/activity journal and see how you feel after an activity or eating and write it down. You may see a pattern. I know I can’t handle a lot of protein in one sitting. It will take time but you will figure out what works for you. God bless! Traci
Thank you so much Traci!
I have definitely started a food diary and so far found sugar and processed protein like ham and deli are problem foods for me.
I am reading “How not to die” by Dr Gregor. Recommended by my Internal Med Dr. (The one who thinks vegan is the cure for everything). And trying to follow that basic plan. So far not sure I’m feeling better, still many days feeling sick and just plain exhausted. But I’ve only been trialing it for a month so I will keep at it for a while longer.
So sorry to hear you’ve been fighting this for so long but it does give me lots of hope and reassurance.
Cheers,
Terri
1 Like