Hi everyone. Thanks for all the intel. Yes i have had a biopsy done and when the results came in thats when i was told i had PSC. I was told it was a rare disease and i had to see a specialist. I go to see a specialist tomarrow morning for a endoscopy procedure ( i think thats how you spell "edoscopy" lol). I had one done already when i was in the hospital but i guess the experts has to do one too. Lol... Anyways i was feeling good untill yesterday i had that same pain i had befor. it nearly brought me to my knees! It felt like somebodies hand was inside my stomach and grabbed a hand full and squeezed and twisted my insides. ouch!!! I hope after the specialist looks at me he can tell me more. I also have a question? I do a pretty hard job where i do alot of heavy lifting. Do any of you know if i'll be able to continue working like this or what has been your experience??? I know i'm supposed to take this day by day but i can't help but worrie about it. I have 3 small kids and i want to be able to support them. Can anyone tell me what are the normal meds for this disease and side affects are?. I don't want to be on pain meds but the way my stomach felt the other night was terrible and there was no way I could have continued working if i was at work. If i have to I guess i have no choice but to take pain meds i just don't like the idea needing them. Does anybody here have a hard labor job?
How old are you? What is the stage of your PSC?
Matt, How old are you? Do you know what is the stage of your PSC?
Matt,
My son was diagnosed a year ago. He has had three biopsies, 3 colonoscopies, his colon removed (currently has an ostomy), has had an enlarged liver, heart, spleen & gallbladder. He still rides motorcycles, works, plays hockey, hunts & fishes. His job requires heavy lifting. Everyone is different. His GI Dr. Said working out & regular excersize are good for him. His job requires heavy lifting. He has another surgery on the 17th. The Ursodiol is working for him. I don’t know what stage he is in. They won’t tell us. I inquired about getting tested for a match for his liver if and when he needs a transplant. Right now they are not perusing that. That’s good news I guess. It all depends on how the PSC is affecting you. After Gage started his meds his appetite came back & his energy came back. He doesn’t take anything other than Tylenol for pain. I would think if you feel up to it heavy lifting for work be fine.
AJ
Hello Mattj,
I'm sorry you had to find us this way, but please be assured that we have all gone through what you are currently facing emotionally in one way or the other. For most of us PSC progresses very slowly. Some have had it 10-20 years without facing transplant yet, yet we all know that sometime out there we will face that. I have been diagnosed 3 years. They will most likely do the following tests on you depending on the doctors so just sit back and relax. There is no need for panic. You should be able to return to your work. For me, there have been little crisis along the way, where I had to miss work a day or two here and there after a procedure but was pretty much normally able to return shortly thereafter. Of all the procedures I have had though, the actual liver biopsy set me back the most because of the pain after the procedure that radiated up and over my shoulder and down my back. But after several weeks that settled down and I was fine. You will want to have your primary doctor refer you to a "Hepatologist" who is a gastro doctor that specializes in diseases of the liver. He will be the best to treat you along the way.
For me, this is the scenario as far as initial tests for diagnosis and first treatment procedures:
1. CAT scan.
2. MRCP - which is a fancy MRI of the liver and abdomen area.
3. Endoscopic ultrasound. They go down your throat, through your stomach and up to your pancreatic & hepatic ducts to do an ultrasound checking for cancer, etc.
4. ERCP - A similiar procedure but they will go up into the ducts and will dialate, clean out stones, etc. to give your ducts better flow.
All these are outpatient procedures and you should be able to return to work the next day after the two endoscopic ones unless there are complications. There are always risks involved in these tests but overall, I have good experiences going through this.
They also may ask you to do a colonoscopy as this can be affected by the PSC.
There are two meds that I currently take.
Rifampin 300 MG. 1 capsule twice a day for itching.
Ursodiol 300 MG. 2 capsules twice a day (total 4 capsules). This helps to thin the bile flow.
I hope this helps. I'm sure others will chime in with some good thoughts and suggestions for you to think about as well. Don't be afraid to bring your family into all these discussions. This is a long term illness but it is not hopeless and you should be able to live a long life all things being equal.
Mark
North Carolina
I'm 31 and i have no idea what stage it's in. I go to the doctor on the 6th of Jan. I didn't know there was stages. I'll ad that to list list of questions I'll be asking him. Ever since i got out of the hospital the first time witch was the 14th of last month i have only been sent once out of town to have a endoscopic ultrasound and i'm being sent back to the original doctor that diagnosed me. i feel like a ping pong ball. i go to talk to him on the 6th and they want to do another biopsy on the 20th. Thats all i know. Why would they want to do another biopsy??? Anyways, sorry i couldn't tell you more :(
Cactusgirl said:
Matt, How old are you? Do you know what is the stage of your PSC?
I ask because young people may have different treatment options. Pediatric small-duct PSC has a different prognosis. Given your age, the onset of your PSC may have been when you would have been considered a pediatric patient.
mattj said:
I'm 31 and i have no idea what stage it's in. I go to the doctor on the 6th of Jan. I didn't know there was stages. I'll ad that to list list of questions I'll be asking him. Ever since i got out of the hospital the first time witch was the 14th of last month i have only been sent once out of town to have a endoscopic ultrasound and i'm being sent back to the original doctor that diagnosed me. i feel like a ping pong ball. i go to talk to him on the 6th and they want to do another biopsy on the 20th. Thats all i know. Why would they want to do another biopsy??? Anyways, sorry i couldn't tell you more :(
Cactusgirl said:Matt, How old are you? Do you know what is the stage of your PSC?
Hey thanks, I'll ask my doctor about Ursodiol. It sounds like that would help. I will also ask him about a hepatologist. I really would like to thank all of you. I feel like I'm better educated and i've got a nice list of things to disguss with the doctor
fcmmark said:
Hello Mattj,
I'm sorry you had to find us this way, but please be assured that we have all gone through what you are currently facing emotionally in one way or the other. For most of us PSC progresses very slowly. Some have had it 10-20 years without facing transplant yet, yet we all know that sometime out there we will face that. I have been diagnosed 3 years. They will most likely do the following tests on you depending on the doctors so just sit back and relax. There is no need for panic. You should be able to return to your work. For me, there have been little crisis along the way, where I had to miss work a day or two here and there after a procedure but was pretty much normally able to return shortly thereafter. Of all the procedures I have had though, the actual liver biopsy set me back the most because of the pain after the procedure that radiated up and over my shoulder and down my back. But after several weeks that settled down and I was fine. You will want to have your primary doctor refer you to a "Hepatologist" who is a gastro doctor that specializes in diseases of the liver. He will be the best to treat you along the way.
For me, this is the scenario as far as initial tests for diagnosis and first treatment procedures:
1. CAT scan.
2. MRCP - which is a fancy MRI of the liver and abdomen area.
3. Endoscopic ultrasound. They go down your throat, through your stomach and up to your pancreatic & hepatic ducts to do an ultrasound checking for cancer, etc.
4. ERCP - A similiar procedure but they will go up into the ducts and will dialate, clean out stones, etc. to give your ducts better flow.
All these are outpatient procedures and you should be able to return to work the next day after the two endoscopic ones unless there are complications. There are always risks involved in these tests but overall, I have good experiences going through this.
They also may ask you to do a colonoscopy as this can be affected by the PSC.
There are two meds that I currently take.
Rifampin 300 MG. 1 capsule twice a day for itching.
Ursodiol 300 MG. 2 capsules twice a day (total 4 capsules). This helps to thin the bile flow.
I hope this helps. I'm sure others will chime in with some good thoughts and suggestions for you to think about as well. Don't be afraid to bring your family into all these discussions. This is a long term illness but it is not hopeless and you should be able to live a long life all things being equal.
Mark
North Carolina
Yes you can! I climb in mountains (winter and summer) ...hardwork but yes i can:)
Can you do hard work with PSC, I don't see why not. Many do http://www.drmirkin.com/fitness/9891.html
I was diagnosed with PSC over 10 years ago. On a day to day basis I don't really think about PSC. I take medicine everyday; however I don't generally have symptoms. I know that I am blessed in the regard, and thankful that my PSC has progressed slowly. I have trained myself to avoid foods that my body doesn't react well to, and I try to workout on a regular basis. I usually have one or two "events" a year, sometimes they last for a week or more, and other times it's just a few days. Then months go by without any health issues at all.
I can't help you much with the work part. I work in an office. I workout fairly hard, but that's only an hour day, not 8-10. I can tell you, and someone correct me if I'm wrong, you have been working with PSC. The pain is likely a blockage from the scar tissue caused by PSC. That is a symptom, when that symptom goes a way there is at least a chance it won't reoccur very often. This of course depends on how far you have progressed.
I do not know the severity of your PSC, or if it will be like my experience. I can tell you that it's not the end of the world, try relax, and get better. I understand how frustrating it can be to not have all the answers but worrying about it won't help. Listen to your body, and your doctor. You can't control that you have PSC but you can control how you react to having PSC. Take it easy, enjoy some extra time with your kids, I hope you get feeling better soon.
Once you get to the root of the pain, I believe the issue of physical work will be resolved. My guess is you will be able to continue working, leaping from tall buildings in a single bound, or whatever it is you do. Remember the famous Walter Payton was a football player who had PSC. The reason he died was because he got cholangiocarcinoma. He announced his PSC in February 1999 and died in November 1999. But before he learned of his illness, he was running around like running backs tend to do. He probably had it for some time before it was announced.
hello. ive had psc for several years and have been prescribed what feels like every medication out there. these meds are vital to keeping you as healthy as possible for as long as possible. they are life savers. i would suggest following the doctors instructions when it comes to medications. it sucks having to take a bunch of pills, but they will help your symptoms significantly! as far as work goes, i would stay away from hard labor. psc can cause you to become very fatigued very quickly and can cause you to feel very sick. i would talk to your supervisor about your condition and see if there is some other position or work you can do. im sure they will be sympathetic to your diagnosis.
I didn't have a labor intensive job, but when younger and for years I was a regular at the gym hitting machines and doing aerobics to keep the weight off. You need to discuss all this with your digestive health group. I know this can be frustrating. I raised 2 boys, yep football, basketball, and track/field or baseball games and worked full time as a teacher, so I was a busy person, but meds and managing symptoms got me through all that. My disease was a sister to UC which was diagnoised in 1986, the PSC wasn't diagnoised until about 1994-I had gall bladder problems due to the PSC and had to have it removed in 2000 and didn't hit the point that a transplant was a necessity until 2007. Every persons disease takes it's own journey. I was back to work within 10 weeks of the transplant and worked until I retired with 34 years of service teaching. I still am active and substitute teach and am even looking for a full/part-time job, yes, I like to be active. I take Ursodol for the PSC, and until transplant took Milk Thistle which is suppose to be good for the liver. Not all MD's allow that, but mine were Ok with it until the transplant. Have they said anything about an ERCP and putting in a stent to help drain your biliary system to protect your liver and gall bladder? I had that procedure once every few years and it is not that bad. Slight sore throat and slow for a day after, but then back to work and getting on with my family and all our activities. The heavy lifting may or may not be a problem. Best to discuss that with your doctor. My PSC or possibly my diet made me low in magnesium, Vit. D, and calcium-so I have been taking those vitamins with a multivitamin for years. Get to know your MD's and the facility you may need to use for any surgery that may become necessary-it is good to feel positive about things as much as you can. Be strong and keep on keeping on. Best of wishes for you with your health issues.
I realize this is an old thread, but I’ll answer for the benefit of anyone else looking for answers.
It depends completely upon your unique situation. PSC comes in a broad spectrum in terms of severity.
I was diagnosed 18 years ago, and I am now 45. I SCUBA dive, skydive, hike and camp, practice archery, and even did competitive jiu-jitsu, including MMA lessons three times a week (I eventually quit a few years ago due to some arthritis in my neck). Professionally speaking, I’m a paramedic in a very high call-volume area. This requires a lot of heavy lifting.
So while everyone is different in terms of the disease progression and severity, I can assure you that PSC does not, in and of itself, preclude you from leading a very active lifestyle.
Missourimedic,
Thanks for sharing your observations on this topic. One thing that we always encourage our new members in this forum to do and that is to live live to its fullest. Each day may be different, some days may be a struggle to get the strength you need, but you must fight and live your life until such time as things worsen and you have to back off. So glad to hear you are working still and doing well. I was fortunate to work the entire time of my PSC diagnosis prior to transplant although there were days of great difficulty there towards the end. Thanks again for sharing and we look forward to hearing more from you in the forum in the days ahead.
Mark
PSC 2011 / Liver Transplant 7-2015