Unfortunately there is no normal with PSC - progression and symptoms are quite variable. Some people never experience itching , others are crippled by it early on. Some are asymptomatic until the day when they need a new liver, others are hit hard with symptoms even with little progression of the disease.
A swollen abdomen and heaviness after eating could be signs of ascites, a symptom of liver cirrhosis. A low salt diet and diuretics can help if this is what is going on. These symptoms are definitely something to bring to the attention of your doctor.
Bile is important for fat digestion. PSC reduces its secretion significantly depending on the stage of the disease. It’s common for psc pts feel abdominal discomfort after a heavy meal. At later stage, cirrhosis may cause similar symptoms. So talk to your doctor about that since he/she knows your situation in detail. Most people have it long before diagnosis.
1. Most of us were asymptomatic in the early stages. With food, I try to limit my fried foods and have gotten to the point of grazing-trying to have multiple snacks throughout the day instead of three main(arge) meals, My appetite is minimal on most evenings. That said, I can still eat most foods without ill-effects, but maybe in smaller doses.
2. Itching varies for us. I remember my shoulders itching in the two winters before being diagnosed-I chalked it up to dry skin in the winter. Now my shoulders can itch at exactly the same places.
3. We all have our coping strategies. While I have been told that the damage to my liver is now severe, I am not on any medication. I usually take long naps on the weekends, sometimes two a day, due to fatigue.
thanks so much, great to get your insights on various aspects of PSC. My abdomen swells after a tiny amount of food, and stays like that for a number of hours. I have an endoscopy/colonoscopy scheduled for this week, and then get my liver biopsy results back. I feel I might have something else going on too, maybe a stomach ulcer. But I guess all will be revealed soon. I get itchy on my back, but I have been blaming it on dry skin too, and it may well be that.
Anyway, thanks for sharing, best wishes to each of you
thanks so much, great to get your insights on various aspects of PSC. My abdomen swells after a tiny amount of food, and stays like that for a number of hours. I have an endoscopy/colonoscopy scheduled for this week, and then get my liver biopsy results back. I feel I might have something else going on too, maybe a stomach ulcer. But I guess all will be revealed soon. I get itchy on my back, but I have been blaming it on dry skin too, and it may well be that.
Anyway, thanks for sharing, best wishes to each of you
Pretty much the what jtb said; we’re all different in terms of what we feel. I was diagnosed in 2001, and aside from the date of diagnosis have been asymptomatic for 90% of my time with this. So to reaply to your survey:
1: Only when I stuff my face with a lot more than I should. I don’t consider that a symptom though, more like general stupidity on my part. No other symptoms.
2: 2015. July. Bilirubin shot up for the first time since 2001 and was admitted. ERCP showed complete blockage of my common bile duct and massive damage overall. I was stage 3 at the time, but was staged at 3 about 2 years before.
3: ERCP-Spyglass has helped with the itch, but since my main ducts are still dilated well enough and my bili is currently normal, so no one is recommending repeat ERCP. Nothing else works for the itch. As I type my feet are itching. I have “retractable pruritus”, which is incurable itch. Now my lower legs are itching. Sigh. My answer would be stage 4, though that’s me. Aside from that, I have a little fatigue, nothing severe yet. Still working, thank goodness.
Feel free to ask anything else. We’re all in this together and should keep in touch. It helps me relax at least, since I don’t know anyone in person with this, and at times I get tired of trying to explain how I feel to people.
Thanks so much for your insights. It's nice to hear it is possible be asymptomatic for as much as 90% of the time. I understand the food thing - its hard to deprive ourselves of food when others aren't. I can easily fall off the healthy food wagon and regret it later.
How did you recover from the blocked bile duct in 2015? Is sounds very serious? Did they operate?introduce a stent?
Its great to hear you are still able to work 15 years on from diagnosis - but I am sorry to hear about the itching. It must drive you crazy.
Thanks again for your openness, and invitation to discuss this. The rarity of this diseases means we only have each other to talk to. I doubt I will meet anyone else with this disease.
Very best wishes to you
M
Nomad2040 said:
Pretty much the what jtb said; we're all different in terms of what we feel. I was diagnosed in 2001, and aside from the date of diagnosis have been asymptomatic for 90% of my time with this. So to reaply to your survey:
1: Only when I stuff my face with a lot more than I should. I don't consider that a symptom though, more like general stupidity on my part. No other symptoms.
2: 2015. July. Bilirubin shot up for the first time since 2001 and was admitted. ERCP showed complete blockage of my common bile duct and massive damage overall. I was stage 3 at the time, but was staged at 3 about 2 years before.
3: ERCP-Spyglass has helped with the itch, but since my main ducts are still dilated well enough and my bili is currently normal, so no one is recommending repeat ERCP. Nothing else works for the itch. As I type my feet are itching. I have "retractable pruritus", which is incurable itch. Now my lower legs are itching. Sigh. My answer would be stage 4, though that's me. Aside from that, I have a little fatigue, nothing severe yet. Still working, thank goodness.
Feel free to ask anything else. We're all in this together and should keep in touch. It helps me relax at least, since I don't know anyone in person with this, and at times I get tired of trying to explain how I feel to people.
I've yet to meet anyone, but I'm pretty sure I've walked by more than one person with it in my lifetime, and I do agree with you, it's a nice outlet to speak to those who are walking in your shoes.
As for 2015, I've had 4 ERCPs. First was when I was completely blocked and had a long plastic stent inserted. That pretty much fixed the problem, but the doctor who did it did not want to check further because of "fear of complications due to advanced disease". The second ERCP was to remove the stent - they can't stay inside you for long - and have the ducts visualized on the more advanced spyglass system. I was then told that my common bile duct and right and left hepatics were essentially destroyed. 3rd ERCP was for itch and a bilirubin level of 7. Doc found a large stone stuck inside the right hepatic and he had is lasered, but could not bag the pieces because my right hepatic is so damaged that it is in an angle that is impossible to get the bag in. Ducts were dilated again and that was that. Then itch came back, bili went up again and I had my 4th ERCP, since doc thought that a piece of the stone that was destroyed could be blocking something. He found nothing, dilated the ducts, and gave me a nice ICU stay of 9 days due to pancreatitis (which is not his fault, the risk is always there). Itch went away though, but came back a few months later. MRCP was done two weeks ago, which showed that large main ducts are still dilated from last ERCP and I didn't need another one. The test also diagnosed me with Splenomegaly (enlarged spleen), and with an earlier sonogram that diagnosed me with a small amount of Portal Hypertension (high blood pressure in the main vein that goes through the liver, which is dangerous), confirmed a diagnosis of cirrhosis, and an official placement into the liver transplant list with a MELD score of 8. No prior operations - I still have everything I was born with.
Aside from all of that, I'm taking it all in stride as best as possible. Everything else in my life seems to be in place, and I'm still working (when I can). Be positive, laugh a lot, get close to your loved ones, and enjoy life. If you can manage to make it to 15 years, you can damn well be sure there will be a cure by then. Even with cirrhosis, I'm still gambling on it.
Mave said:
Thanks so much for your insights. It's nice to hear it is possible be asymptomatic for as much as 90% of the time. I understand the food thing - its hard to deprive ourselves of food when others aren't. I can easily fall off the healthy food wagon and regret it later.
How did you recover from the blocked bile duct in 2015? Is sounds very serious? Did they operate?introduce a stent?
Its great to hear you are still able to work 15 years on from diagnosis - but I am sorry to hear about the itching. It must drive you crazy.
Thanks again for your openness, and invitation to discuss this. The rarity of this diseases means we only have each other to talk to. I doubt I will meet anyone else with this disease.
Very best wishes to you
M
Nomad2040 said:
Pretty much the what jtb said; we're all different in terms of what we feel. I was diagnosed in 2001, and aside from the date of diagnosis have been asymptomatic for 90% of my time with this. So to reaply to your survey:
1: Only when I stuff my face with a lot more than I should. I don't consider that a symptom though, more like general stupidity on my part. No other symptoms.
2: 2015. July. Bilirubin shot up for the first time since 2001 and was admitted. ERCP showed complete blockage of my common bile duct and massive damage overall. I was stage 3 at the time, but was staged at 3 about 2 years before.
3: ERCP-Spyglass has helped with the itch, but since my main ducts are still dilated well enough and my bili is currently normal, so no one is recommending repeat ERCP. Nothing else works for the itch. As I type my feet are itching. I have "retractable pruritus", which is incurable itch. Now my lower legs are itching. Sigh. My answer would be stage 4, though that's me. Aside from that, I have a little fatigue, nothing severe yet. Still working, thank goodness.
Feel free to ask anything else. We're all in this together and should keep in touch. It helps me relax at least, since I don't know anyone in person with this, and at times I get tired of trying to explain how I feel to people.
Thanks so much for your candid reply. You have been through the wringer. It's a testament to you regarding how positive you sound when you have been through so much. I now understand more about ERCPs. I had previously understood them to be diagnostic, but I see they are used for treatment too.
I think this is helping me get to the bottom of some symptoms that the medical profession have been unable to help with. When I was first alerted that something was wrong, I have severe abdo pains that felt exactly like gallstones/gallstone attack, only I have had my gall bladder out. The initial treatment was for gastritis/stomach ulcers etc, but I have stood by my 'gallstone-like' symptoms, only to have them rejected because I don't have a gall bladder. The picture is coming together for me, and its taxing to go through the GPs hit and miss suspicious of alcoholism (now there is a stigma with this disease), ulcers, gastritis, in my head, nothing wrong, etc. Thank goodness I now have a great specialist who gets it. No wonder we all sound like such experts on PSC, you have to be. So thank you for helping me learn from your own experiences (as well as google, and the peer reviewed medical literature (no there is some light reading).
I guess you are now waiting for a liver transplant? I can imagine there would be mixed feelings there. But if it helps, please write and share about that process too. The MELD scoring, the waiting, the fear/anticipation etc. I am happy to keep the conversation going if you are. Knowledge is power, my friend. All the best to you
M
Nomad2040 said:
I've yet to meet anyone, but I'm pretty sure I've walked by more than one person with it in my lifetime, and I do agree with you, it's a nice outlet to speak to those who are walking in your shoes.
As for 2015, I've had 4 ERCPs. First was when I was completely blocked and had a long plastic stent inserted. That pretty much fixed the problem, but the doctor who did it did not want to check further because of "fear of complications due to advanced disease". The second ERCP was to remove the stent - they can't stay inside you for long - and have the ducts visualized on the more advanced spyglass system. I was then told that my common bile duct and right and left hepatics were essentially destroyed. 3rd ERCP was for itch and a bilirubin level of 7. Doc found a large stone stuck inside the right hepatic and he had is lasered, but could not bag the pieces because my right hepatic is so damaged that it is in an angle that is impossible to get the bag in. Ducts were dilated again and that was that. Then itch came back, bili went up again and I had my 4th ERCP, since doc thought that a piece of the stone that was destroyed could be blocking something. He found nothing, dilated the ducts, and gave me a nice ICU stay of 9 days due to pancreatitis (which is not his fault, the risk is always there). Itch went away though, but came back a few months later. MRCP was done two weeks ago, which showed that large main ducts are still dilated from last ERCP and I didn't need another one. The test also diagnosed me with Splenomegaly (enlarged spleen), and with an earlier sonogram that diagnosed me with a small amount of Portal Hypertension (high blood pressure in the main vein that goes through the liver, which is dangerous), confirmed a diagnosis of cirrhosis, and an official placement into the liver transplant list with a MELD score of 8. No prior operations - I still have everything I was born with.
Aside from all of that, I'm taking it all in stride as best as possible. Everything else in my life seems to be in place, and I'm still working (when I can). Be positive, laugh a lot, get close to your loved ones, and enjoy life. If you can manage to make it to 15 years, you can damn well be sure there will be a cure by then. Even with cirrhosis, I'm still gambling on it.
Mave said:
Thanks so much for your insights. It's nice to hear it is possible be asymptomatic for as much as 90% of the time. I understand the food thing - its hard to deprive ourselves of food when others aren't. I can easily fall off the healthy food wagon and regret it later.
How did you recover from the blocked bile duct in 2015? Is sounds very serious? Did they operate?introduce a stent?
Its great to hear you are still able to work 15 years on from diagnosis - but I am sorry to hear about the itching. It must drive you crazy.
Thanks again for your openness, and invitation to discuss this. The rarity of this diseases means we only have each other to talk to. I doubt I will meet anyone else with this disease.
Very best wishes to you
M
Nomad2040 said:
Pretty much the what jtb said; we're all different in terms of what we feel. I was diagnosed in 2001, and aside from the date of diagnosis have been asymptomatic for 90% of my time with this. So to reaply to your survey:
1: Only when I stuff my face with a lot more than I should. I don't consider that a symptom though, more like general stupidity on my part. No other symptoms.
2: 2015. July. Bilirubin shot up for the first time since 2001 and was admitted. ERCP showed complete blockage of my common bile duct and massive damage overall. I was stage 3 at the time, but was staged at 3 about 2 years before.
3: ERCP-Spyglass has helped with the itch, but since my main ducts are still dilated well enough and my bili is currently normal, so no one is recommending repeat ERCP. Nothing else works for the itch. As I type my feet are itching. I have "retractable pruritus", which is incurable itch. Now my lower legs are itching. Sigh. My answer would be stage 4, though that's me. Aside from that, I have a little fatigue, nothing severe yet. Still working, thank goodness.
Feel free to ask anything else. We're all in this together and should keep in touch. It helps me relax at least, since I don't know anyone in person with this, and at times I get tired of trying to explain how I feel to people.
Mave, I look at transplants in a very conflicted way. While I am on a list-very low on the list, I sometimes wish for a short wait and get the transplant while I am still reasonably young, or wait 10-15 years until my health deteriorates to the degree a transplant is either conducted or I die.
There is no right answer for this dilemma.
Jeff
Mave said:
Thanks so much for your candid reply. You have been through the wringer. It's a testament to you regarding how positive you sound when you have been through so much. I now understand more about ERCPs. I had previously understood them to be diagnostic, but I see they are used for treatment too.
I think this is helping me get to the bottom of some symptoms that the medical profession have been unable to help with. When I was first alerted that something was wrong, I have severe abdo pains that felt exactly like gallstones/gallstone attack, only I have had my gall bladder out. The initial treatment was for gastritis/stomach ulcers etc, but I have stood by my 'gallstone-like' symptoms, only to have them rejected because I don't have a gall bladder. The picture is coming together for me, and its taxing to go through the GPs hit and miss suspicious of alcoholism (now there is a stigma with this disease), ulcers, gastritis, in my head, nothing wrong, etc. Thank goodness I now have a great specialist who gets it. No wonder we all sound like such experts on PSC, you have to be. So thank you for helping me learn from your own experiences (as well as google, and the peer reviewed medical literature (no there is some light reading).
I guess you are now waiting for a liver transplant? I can imagine there would be mixed feelings there. But if it helps, please write and share about that process too. The MELD scoring, the waiting, the fear/anticipation etc. I am happy to keep the conversation going if you are. Knowledge is power, my friend. All the best to you
M
Nomad2040 said:
I've yet to meet anyone, but I'm pretty sure I've walked by more than one person with it in my lifetime, and I do agree with you, it's a nice outlet to speak to those who are walking in your shoes.
As for 2015, I've had 4 ERCPs. First was when I was completely blocked and had a long plastic stent inserted. That pretty much fixed the problem, but the doctor who did it did not want to check further because of "fear of complications due to advanced disease". The second ERCP was to remove the stent - they can't stay inside you for long - and have the ducts visualized on the more advanced spyglass system. I was then told that my common bile duct and right and left hepatics were essentially destroyed. 3rd ERCP was for itch and a bilirubin level of 7. Doc found a large stone stuck inside the right hepatic and he had is lasered, but could not bag the pieces because my right hepatic is so damaged that it is in an angle that is impossible to get the bag in. Ducts were dilated again and that was that. Then itch came back, bili went up again and I had my 4th ERCP, since doc thought that a piece of the stone that was destroyed could be blocking something. He found nothing, dilated the ducts, and gave me a nice ICU stay of 9 days due to pancreatitis (which is not his fault, the risk is always there). Itch went away though, but came back a few months later. MRCP was done two weeks ago, which showed that large main ducts are still dilated from last ERCP and I didn't need another one. The test also diagnosed me with Splenomegaly (enlarged spleen), and with an earlier sonogram that diagnosed me with a small amount of Portal Hypertension (high blood pressure in the main vein that goes through the liver, which is dangerous), confirmed a diagnosis of cirrhosis, and an official placement into the liver transplant list with a MELD score of 8. No prior operations - I still have everything I was born with.
Aside from all of that, I'm taking it all in stride as best as possible. Everything else in my life seems to be in place, and I'm still working (when I can). Be positive, laugh a lot, get close to your loved ones, and enjoy life. If you can manage to make it to 15 years, you can damn well be sure there will be a cure by then. Even with cirrhosis, I'm still gambling on it.
Mave said:
Thanks so much for your insights. It's nice to hear it is possible be asymptomatic for as much as 90% of the time. I understand the food thing - its hard to deprive ourselves of food when others aren't. I can easily fall off the healthy food wagon and regret it later.
How did you recover from the blocked bile duct in 2015? Is sounds very serious? Did they operate?introduce a stent?
Its great to hear you are still able to work 15 years on from diagnosis - but I am sorry to hear about the itching. It must drive you crazy.
Thanks again for your openness, and invitation to discuss this. The rarity of this diseases means we only have each other to talk to. I doubt I will meet anyone else with this disease.
Very best wishes to you
M
Nomad2040 said:
Pretty much the what jtb said; we're all different in terms of what we feel. I was diagnosed in 2001, and aside from the date of diagnosis have been asymptomatic for 90% of my time with this. So to reaply to your survey:
1: Only when I stuff my face with a lot more than I should. I don't consider that a symptom though, more like general stupidity on my part. No other symptoms.
2: 2015. July. Bilirubin shot up for the first time since 2001 and was admitted. ERCP showed complete blockage of my common bile duct and massive damage overall. I was stage 3 at the time, but was staged at 3 about 2 years before.
3: ERCP-Spyglass has helped with the itch, but since my main ducts are still dilated well enough and my bili is currently normal, so no one is recommending repeat ERCP. Nothing else works for the itch. As I type my feet are itching. I have "retractable pruritus", which is incurable itch. Now my lower legs are itching. Sigh. My answer would be stage 4, though that's me. Aside from that, I have a little fatigue, nothing severe yet. Still working, thank goodness.
Feel free to ask anything else. We're all in this together and should keep in touch. It helps me relax at least, since I don't know anyone in person with this, and at times I get tired of trying to explain how I feel to people.
Yes, I blamed itchiness on my legs on dry skin for years before I was diagnosed. I had a girlfriend compare me to her flea-infested dog back in the early 90's, because I kept her awake with itching. It's something that makes me wonder whether I had it even back then.
Mave said:
I get itchy on my back, but I have been blaming it on dry skin too, and it may well be that.
Mave, sorry to hear you've joined our dubious club. I was in treatment/exploratory stages just one year ago. My diagnosis of PSC was delivered in Feb. 2015. Prior to PSC I was diagnosed with Ulcerative Colitis (UC) and have been taking Lialda for it. As I'm sure you've discovered, UC and PSC are a very common pair to have.
Since my diagnosis I believe I've been fortunate to be asymptomatic. The most problematic condition I suffer with is itchy back syndrome. My wife has been comparing me to a bear scratching on a tree for years. We just never equated it to a disease.
My approach to PSC, like everyone here, is to try to lead as healthy a life as possible. My diet has become unbelievably restricted, not only due to the PSC and UC but also because I've got diverticulosis (beginning stage of diverticulitis). So eating healthy is first and foremost. In addition to eating healthy I've taken on the 'job' of fitness. I believe it is incredibly important for every one of us to be physically prepared when/if the day arrives that our doctors tell us we have to be put on a transplant list. I don't believe it behooves us to get the news and then say, 'oh crap, I better get in shape for surgery'. I'm quite sure the transplant team will look for the best candidate/recipient for the limited number of livers available. If two people have a MELD of lets say 22, and they are both towards the top of the list, you can bet they're going to offer the donor liver to the best candidate. BE THAT CANDIDATE!!!
Since the day after my PSC diagnosis I started swimming. It took me about a month to get my endurance up. I've been swimming six days every week. As I mentioned earlier I've made this my 'job'. I swim 1.5 miles every day. I lost 45 lbs and weigh less than I did when I graduated HS in 1977. Again Mave, BE THAT CANDIDATE!!!
I view myself as someone who was dealt a crappy hand but wants to encourage those who've been saddled with this disease to lead as healthy and long a life as possible. I know the diet and physical activity isn't healing my PSC. My levels haven't gotten better, but quite frankly, the symptoms of this disease can make us all feel horrible. I know it sounds odd, but I haven't felt this 'healthy' in over 10 year. If the encouragement I can offer makes anyone feel better/healthier then I've done as much as I feel any doctor can do for us at this time. Will a cure be found for us someday? I sure as hell hope so. I am confident researchers are trying, but the number of us with this disease is incredibly low, so I feel the only real way to 'get better' is to live healthy.....as much of an oxymoron as that may seem.
I hope you can glean at least a bit of hope from my little diatribe. Be well and stay positive.
Hi, I say yes to the first question and as far as the itching goes I struggle with that all the time. I fell a few weeks ago and bruised a couple of ribs and have been in a lot of pain for that and when I take pain medication I feel itchy all over. Miserable side effect of the liver and kidneys not doing 100 percent. I have had psc since 1983 and now and then I get a good blood workup with everything performing very well and then just a month later I can have a crisis. Ercps are very good because without them i wouldn't be here. Not so much fun to endure though. I have heaviness after I eat most of the time and I know I have a stomach ulcer. I'm not sure if my stomach problems are all from psc. I am presently doing all I can to take as few prescription medication as possible because of the side effects and the burden they place on your organs. Even things like tylenol is a burden for organs that aren't doing their duties efficiently
Good luck to you newby's. It's a long long road but for the most part I lead a pretty normal life. I had my colon removed in 1985 and that helped tremendously.
I almost forgot to mention one thing. I have never been a good water drinker but the longer I live with psc the more I come to realize how really important drinking water is. I try to hit my target of 64 ounces of water every day and most of the time I am successful. Drinking even more is better but since I have to work at it I tried to set a goal that I could reach most days. Pure filtered water is the best of course.
Lyn.
Nomad2040 said:
Pretty much the what jtb said; we're all different in terms of what we feel. I was diagnosed in 2001, and aside from the date of diagnosis have been asymptomatic for 90% of my time with this. So to reaply to your survey:
1: Only when I stuff my face with a lot more than I should. I don't consider that a symptom though, more like general stupidity on my part. No other symptoms.
2: 2015. July. Bilirubin shot up for the first time since 2001 and was admitted. ERCP showed complete blockage of my common bile duct and massive damage overall. I was stage 3 at the time, but was staged at 3 about 2 years before.
3: ERCP-Spyglass has helped with the itch, but since my main ducts are still dilated well enough and my bili is currently normal, so no one is recommending repeat ERCP. Nothing else works for the itch. As I type my feet are itching. I have "retractable pruritus", which is incurable itch. Now my lower legs are itching. Sigh. My answer would be stage 4, though that's me. Aside from that, I have a little fatigue, nothing severe yet. Still working, thank goodness.
Feel free to ask anything else. We're all in this together and should keep in touch. It helps me relax at least, since I don't know anyone in person with this, and at times I get tired of trying to explain how I feel to people.
Which hospital you are listed? Seems they are very aggressive in treating the PSC. I had a sudden jump of bilirubin a few months ago and my doctor only relied on MRCP. My years ago ERCP showed no dominant stricture. But this time they refused to even just take a look with ERCP and instead put me on transplant evaluation immediately. Here the threshold of being listed is about 15. Below that after being listed, your status becomes inactive. You need about 30 to be on top of the list.
Nomad2040 said:
I've yet to meet anyone, but I'm pretty sure I've walked by more than one person with it in my lifetime, and I do agree with you, it's a nice outlet to speak to those who are walking in your shoes.
As for 2015, I've had 4 ERCPs. First was when I was completely blocked and had a long plastic stent inserted. That pretty much fixed the problem, but the doctor who did it did not want to check further because of "fear of complications due to advanced disease". The second ERCP was to remove the stent - they can't stay inside you for long - and have the ducts visualized on the more advanced spyglass system. I was then told that my common bile duct and right and left hepatics were essentially destroyed. 3rd ERCP was for itch and a bilirubin level of 7. Doc found a large stone stuck inside the right hepatic and he had is lasered, but could not bag the pieces because my right hepatic is so damaged that it is in an angle that is impossible to get the bag in. Ducts were dilated again and that was that. Then itch came back, bili went up again and I had my 4th ERCP, since doc thought that a piece of the stone that was destroyed could be blocking something. He found nothing, dilated the ducts, and gave me a nice ICU stay of 9 days due to pancreatitis (which is not his fault, the risk is always there). Itch went away though, but came back a few months later. MRCP was done two weeks ago, which showed that large main ducts are still dilated from last ERCP and I didn't need another one. The test also diagnosed me with Splenomegaly (enlarged spleen), and with an earlier sonogram that diagnosed me with a small amount of Portal Hypertension (high blood pressure in the main vein that goes through the liver, which is dangerous), confirmed a diagnosis of cirrhosis, and an official placement into the liver transplant list with a MELD score of 8. No prior operations - I still have everything I was born with.
Aside from all of that, I'm taking it all in stride as best as possible. Everything else in my life seems to be in place, and I'm still working (when I can). Be positive, laugh a lot, get close to your loved ones, and enjoy life. If you can manage to make it to 15 years, you can damn well be sure there will be a cure by then. Even with cirrhosis, I'm still gambling on it.
One other thing I'd say that definitely makes a difference for me on the itching is how much water I drink. If I am well hydrated, I'm much less likely to be itchy.
thanks so much for your reply. yes, a dubious club indeed, but I am thankful to have found this company :) You are very inspiring, with your positive attitude to having the disease, but also you taking your weight, diet and fitness in hand. It sounds like a good way to become empowered - I am going to take a leaf out of your book. Thanks so much, hope you continue to be asymptomatic and that itchy back gives you a break
Best wishes
Mave
masterswimmer said:
Mave, sorry to hear you've joined our dubious club. I was in treatment/exploratory stages just one year ago. My diagnosis of PSC was delivered in Feb. 2015. Prior to PSC I was diagnosed with Ulcerative Colitis (UC) and have been taking Lialda for it. As I'm sure you've discovered, UC and PSC are a very common pair to have.
Since my diagnosis I believe I've been fortunate to be asymptomatic. The most problematic condition I suffer with is itchy back syndrome. My wife has been comparing me to a bear scratching on a tree for years. We just never equated it to a disease.
My approach to PSC, like everyone here, is to try to lead as healthy a life as possible. My diet has become unbelievably restricted, not only due to the PSC and UC but also because I've got diverticulosis (beginning stage of diverticulitis). So eating healthy is first and foremost. In addition to eating healthy I've taken on the 'job' of fitness. I believe it is incredibly important for every one of us to be physically prepared when/if the day arrives that our doctors tell us we have to be put on a transplant list. I don't believe it behooves us to get the news and then say, 'oh crap, I better get in shape for surgery'. I'm quite sure the transplant team will look for the best candidate/recipient for the limited number of livers available. If two people have a MELD of lets say 22, and they are both towards the top of the list, you can bet they're going to offer the donor liver to the best candidate. BE THAT CANDIDATE!!!
Since the day after my PSC diagnosis I started swimming. It took me about a month to get my endurance up. I've been swimming six days every week. As I mentioned earlier I've made this my 'job'. I swim 1.5 miles every day. I lost 45 lbs and weigh less than I did when I graduated HS in 1977. Again Mave, BE THAT CANDIDATE!!!
I view myself as someone who was dealt a crappy hand but wants to encourage those who've been saddled with this disease to lead as healthy and long a life as possible. I know the diet and physical activity isn't healing my PSC. My levels haven't gotten better, but quite frankly, the symptoms of this disease can make us all feel horrible. I know it sounds odd, but I haven't felt this 'healthy' in over 10 year. If the encouragement I can offer makes anyone feel better/healthier then I've done as much as I feel any doctor can do for us at this time. Will a cure be found for us someday? I sure as hell hope so. I am confident researchers are trying, but the number of us with this disease is incredibly low, so I feel the only real way to 'get better' is to live healthy.....as much of an oxymoron as that may seem.
I hope you can glean at least a bit of hope from my little diatribe. Be well and stay positive.
Thanks so much for sharing your experiences and the tips about meds and water. You sound quite positive considering you have had PSC since 1983. When I consulted Dr Google I thought I would be dead or on the transplant list within years, but you have dealt with it for over 30 years. Interesting to hear about the ERCPs keeping you going. It seems to be a common theme in my research on this. It's a learning curve, alright. I wonder if your stomach ulcer is related? I feel like I have one but I got the all clear in a recent endoscopy, so I guess the uncomfortable feeling, and sometimes pain, after eating must be the PSC. Take good care, Lyn, and thanks again for talking with me
Mave
glena374 said:
Hi, I say yes to the first question and as far as the itching goes I struggle with that all the time. I fell a few weeks ago and bruised a couple of ribs and have been in a lot of pain for that and when I take pain medication I feel itchy all over. Miserable side effect of the liver and kidneys not doing 100 percent. I have had psc since 1983 and now and then I get a good blood workup with everything performing very well and then just a month later I can have a crisis. Ercps are very good because without them i wouldn't be here. Not so much fun to endure though. I have heaviness after I eat most of the time and I know I have a stomach ulcer. I'm not sure if my stomach problems are all from psc. I am presently doing all I can to take as few prescription medication as possible because of the side effects and the burden they place on your organs. Even things like tylenol is a burden for organs that aren't doing their duties efficiently
Good luck to you newby's. It's a long long road but for the most part I lead a pretty normal life. I had my colon removed in 1985 and that helped tremendously.
I almost forgot to mention one thing. I have never been a good water drinker but the longer I live with psc the more I come to realize how really important drinking water is. I try to hit my target of 64 ounces of water every day and most of the time I am successful. Drinking even more is better but since I have to work at it I tried to set a goal that I could reach most days. Pure filtered water is the best of course.
Lyn.
Nomad2040 said:
Pretty much the what jtb said; we're all different in terms of what we feel. I was diagnosed in 2001, and aside from the date of diagnosis have been asymptomatic for 90% of my time with this. So to reaply to your survey:
1: Only when I stuff my face with a lot more than I should. I don't consider that a symptom though, more like general stupidity on my part. No other symptoms.
2: 2015. July. Bilirubin shot up for the first time since 2001 and was admitted. ERCP showed complete blockage of my common bile duct and massive damage overall. I was stage 3 at the time, but was staged at 3 about 2 years before.
3: ERCP-Spyglass has helped with the itch, but since my main ducts are still dilated well enough and my bili is currently normal, so no one is recommending repeat ERCP. Nothing else works for the itch. As I type my feet are itching. I have "retractable pruritus", which is incurable itch. Now my lower legs are itching. Sigh. My answer would be stage 4, though that's me. Aside from that, I have a little fatigue, nothing severe yet. Still working, thank goodness.
Feel free to ask anything else. We're all in this together and should keep in touch. It helps me relax at least, since I don't know anyone in person with this, and at times I get tired of trying to explain how I feel to people.
One other thing I'd say that definitely makes a difference for me on the itching is how much water I drink. If I am well hydrated, I'm much less likely to be itchy.
