I'm new to all of this so bear with me. I was curious as to how many people have Primary Sclerosing Cholangitis as well as Ulcerative Colitis? Or Crohns? How do you deal with it? I was told by my doctor (I have UC) that whenever I have a flare up that my liver could possible flare up and that might be why I get symptoms etc. What do you guys to help not get flares up if you have UC.
Am I allowed to ask a question having to do with UC and PSC?
Thanks
-Danielle
UC, IBD or Crohn's and PSC seem to go together. I am completely off all my medications now and using diet and the such to improve myself. The challenge is controlling the GI (and body) issue to keep the inflammatory process down which seems to flare the bile ducts and ultimate liver.
You can email me offline as several people do. Since 2005 I had doctors shoving pills down my throat and radiating the heck out of me with tests and NOT KNOWING what to do when I was finally diagnosed (3/2010) caused me to PAY ATTENTION. It appears there are people who like to criticize others so I am happy to share with you OFFLINE. We are all so different but there are some basics we can follow. I am not a doctor as most of us aren't but I sure can share what I do and perhaps some of what I have learned the hard way can help you. I know transplant is the ONLY real TREATMENT (not cure) but I also know a transplant is not good. They just about have to kill our immune system to get it to leave the transplant alone as we are programmed to kill intruders. I know SOME say they've never felt better with that new liver but it is a tough journey. I try to keep my body part (and cells in general) healthy.
Mona: PSC and Crohn's. I was dying in 2009. I couldn't stand long enough to brush my teeth and I couldn't drive. I've gone from stage 3-4 to 0-1 recently and my Crohn's is in FULL REMISSION. Pharmaceutical free and loving life. Doesn't mean I don't have to stay ON IT every single day but I am very happy. My doctors are NOW true believers and support and encourage me. It is important to get doctors that PAY ATTENTION and care about results and NOT padding their pockets with Big Pharmaceutical monies. Have a great Day! I live in CA and it really is beautiful.
Hi Danielle,
I have both UC and PSC. Initially they thought I had Crohns, but then changed the diagnosis to UC. I understand that most people have both -- the UC can cause the PSC. I was dignosed about 5 years ago and am still adjusting and learning how to manage symptoms. I was on medication (Urso Forte for my liver) for a while but now I don't take anything (I had a gut instinct to stop taking it ... then a year later I find out from my doctor that new research came out that showed it actually did more harm than good) -- other than a multi-vitamin here and there. I found that the pills sitting in my stomach actually made me feel more sick.
Sometimes it's hit or miss -- but I typically avoid a lot of dairy products ... milk occasionally makes me feel sick. I also stay away from a lot of lettuce and spicy foods (although I'm not going to lie ... sometimes you just need a good Mexican meal! but I definitely feel it afterward). I also try to drink water with lemons -- apparently lemons help your liver. Milk thistle (a supplement) is also proven to help rejuvenate liver function -- so you can consider that as well.
Make sure you take time to relax. I'm one of those on-the-go people who's literally always doing something for someone (you'll note it's midnight now and I'm still going! haha) -- but make sure you take time to relax and de-stress. I've found that when I'm stressed my liver hurts a lot worse than normal. Too much sugar can cause more liver pain as well.
I would say to talk with your doctor -- but definitely listen to your own body. Others may react to something one way -- but you might react a completely different way. It's all about what you can handle and how you feel day to day. I've found the typical things like living a healthy lifestyle and exercising help tremendously.
Somedays are just plain awful -- but a positive attitude is always important to come back to. And remember -- you aren't alone! I had a very difficult time dealing with the diagnosis before I found this group. You can explain it to friends and famiy all you want ... but until you talk to someone who has the same issues ... you know the others don't quite fully understand.
Hope this helps!
~ Stacy
Hi there,
ich was diagnosed with Crohn's when I was 5 in 1992. Now, only 2 weeks ago, at the age of 24, I got the diagnose of PSC and my doctor changed the other diagnose to UC. I am also as curious as you are, because PSC is new to me too. As well as UC, although it is similar to Crohn's.
So ask questions, I am also interested in the answers ;)
Hi Danielle,
About 70% of people with PSC have some sort of IBD - at least those were the last numbers I saw. So little is known about what causes PSC that they are still working on how one is linked to the other.
I think its great that you would pose the question - most people on this forum seem to have dealt with IBD in some form. I have UC, for instance. I take a combination of drugs that treat both (Urso for my liver, Immuran for my UC, prednisone for both) as well as as Asacol for maintenance for the UC.
I'd say they have varying effects. For instance, I've responded really well to the pharma treatments. My AST/LST, alk phos and bilyrubin levels have all come way down and stabilized. My IBD flare ups have also dramatically decreased. I'd agree with Stacy and Mona that diet is really important, too. I've had to give up a lot of fatty and processed foods. Dairy also seems to cause issues. My doc recommended a "greek diet" so lots of chicken, fish, veggies and light oils. It really helps.
Just make sure you listen to your body. And, above all, don't take any supplements without running them by your doctor first. Hope this helps!
i take pentasa for uc, find it works, i notice it if i dont take it for a couple of days.
Thank you everyone that has responded! I appreciate any information!!
Mona - what's your e-mail address, I'm interested in your way of doing things. I was diagnosed in 2007- the Doctors estimate I'd had PSC for less than a year since my liver was in excellent health. I'm still in pretty good shape so anything that can help without medication the better.
Stewart
Mona said:
UC, IBD or Crohn's and PSC seem to go together. I am completely off all my medications now and using diet and the such to improve myself. The challenge is controlling the GI (and body) issue to keep the inflammatory process down which seems to flare the bile ducts and ultimate liver.
You can email me offline as several people do. Since 2005 I had doctors shoving pills down my throat and radiating the heck out of me with tests and NOT KNOWING what to do when I was finally diagnosed (3/2010) caused me to PAY ATTENTION. It appears there are people who like to criticize others so I am happy to share with you OFFLINE. We are all so different but there are some basics we can follow. I am not a doctor as most of us aren't but I sure can share what I do and perhaps some of what I have learned the hard way can help you. I know transplant is the ONLY real TREATMENT (not cure) but I also know a transplant is not good. They just about have to kill our immune system to get it to leave the transplant alone as we are programmed to kill intruders. I know SOME say they've never felt better with that new liver but it is a tough journey. I try to keep my body part (and cells in general) healthy.
Mona: PSC and Crohn's. I was dying in 2009. I couldn't stand long enough to brush my teeth and I couldn't drive. I've gone from stage 3-4 to 0-1 recently and my Crohn's is in FULL REMISSION. Pharmaceutical free and loving life. Doesn't mean I don't have to stay ON IT every single day but I am very happy. My doctors are NOW true believers and support and encourage me. It is important to get doctors that PAY ATTENTION and care about results and NOT padding their pockets with Big Pharmaceutical monies. Have a great Day! I live in CA and it really is beautiful.
How do I email you off line? I have been diagnosed with PSC for 10 years now and this year all the symptoms are occurring--itching, fever, chills --sometimes I cannot get out of bed. I am trying to figure out the things that trigger the worse symptoms --I have a stint in my bile duct to widen it.
Mona said:
UC, IBD or Crohn's and PSC seem to go together. I am completely off all my medications now and using diet and the such to improve myself. The challenge is controlling the GI (and body) issue to keep the inflammatory process down which seems to flare the bile ducts and ultimate liver.
You can email me offline as several people do. Since 2005 I had doctors shoving pills down my throat and radiating the heck out of me with tests and NOT KNOWING what to do when I was finally diagnosed (3/2010) caused me to PAY ATTENTION. It appears there are people who like to criticize others so I am happy to share with you OFFLINE. We are all so different but there are some basics we can follow. I am not a doctor as most of us aren't but I sure can share what I do and perhaps some of what I have learned the hard way can help you. I know transplant is the ONLY real TREATMENT (not cure) but I also know a transplant is not good. They just about have to kill our immune system to get it to leave the transplant alone as we are programmed to kill intruders. I know SOME say they've never felt better with that new liver but it is a tough journey. I try to keep my body part (and cells in general) healthy.
Mona: PSC and Crohn's. I was dying in 2009. I couldn't stand long enough to brush my teeth and I couldn't drive. I've gone from stage 3-4 to 0-1 recently and my Crohn's is in FULL REMISSION. Pharmaceutical free and loving life. Doesn't mean I don't have to stay ON IT every single day but I am very happy. My doctors are NOW true believers and support and encourage me. It is important to get doctors that PAY ATTENTION and care about results and NOT padding their pockets with Big Pharmaceutical monies. Have a great Day! I live in CA and it really is beautiful.
■■■■■■■■■■■■■■■■■■■■■■■
Identify yourself and the group otherwise I might not trust.
10 years and having a recurring immune response that strong does mean we need to pay attention or be at the mercy of the doctors. My doctors love me. They help me at times but they are so proud of me now given where I've been. Hang in there...You too Stewart.
Mona: PSC/Crohn's
I was under the impression that if you have a fever its generaly a sure sign you have an infection in your bile and should get on some antibiotics
reagent507 said:
How do I email you off line? I have been diagnosed with PSC for 10 years now and this year all the symptoms are occurring--itching, fever, chills --sometimes I cannot get out of bed. I am trying to figure out the things that trigger the worse symptoms --I have a stint in my bile duct to widen it.
IF YOU are talking to me, my doctors always told me if there is a constant fever over 101 with stomach pain, I should go to emergency. However, when I get there and wait 4-8 hours the fever runs it's course. I personally try to stay off antibiotics. It takes me MONTHS after that to get my gut flora back in shape and battle the candida.Of course getting blood work done is great but usually it doesn't cause a stay in the hospital. I know when I'm in trouble. It's very rare that I can't handle it on my own. However, it does happen. I spent some time in February in the hospital with Pancreatitis. ONLY because I let the doctors do an ERCP on me.
Of course I AM NOT A DOCTOR!!!!!! However, I stop eating and spend a couple of days on 1,500 calories a day fortified drinks [homemade or glucerna, ensure, boost] and rid myself of food I probably shouldn't have eaten. We are only human though. We can't be perfect. For example: I never had a problem with onions or peanuts...lately, I can't stop itching if I eat them. Next year, it won't cause me a problem. It comes and goes. Last year it was household chemicals...right now, I'm not having a problem with them.
Today I am going on a liquid fast and resting [EASTER DINNER YUM]. I feel a bit sluggish and if I let it go, I am going to be sick with a fever and severe pain. I have to pay for all the excitement, running and food NOW or really suffer later. Undigested food still moves and dumps big chunks into the blood stream. Imagine the liver having to deal with that. I wouldn't trade the GOOD TIME for the world. We are just special and have to treat ourselves that way. STRESS is another topic.
Mona
Hey Reagan and todd- If you have a fever over 100 or 101, you should DEFINETELY go to the E.R. I k.ow this bcuz I h am very familiar with liver infections. I have been hospitalized 6 times in 2011 bcuz of infections. All six times I had a fever , upper abdominal pain and increased jaundice in my eyes. The fevers all started out low and eventually went past 100 degrees. I was always told by my heptologist to always go to the ER if my fever went over 100. You don’t want to risk anything.
Marie84
Todd D said:
I was under the impression that if you have a fever its generaly a sure sign you have an infection in your bile and should get on some antibiotics
reagent507 said:How do I email you off line? I have been diagnosed with PSC for 10 years now and this year all the symptoms are occurring–itching, fever, chills --sometimes I cannot get out of bed. I am trying to figure out the things that trigger the worse symptoms --I have a stint in my bile duct to widen it.
Danielle- I also have UC and PSC and it is common for people with PSC to have UC or Crohns. My UC was really bad when I was diagnosed in 2006. I was on high dosages of prednisone at the time bcuz my first heptologist thought I had autoimmune hepatitis. Predisone did not help much. In fact it did worse and brought my bone density down to borderline osteoperosis. It is under control now and I take mesalamine for it. Do you take anything for it? I also found that by changing my diet and eating healthier helped it. I found that stress is a big trigger for flare ups of both the PSC and UC.
Mine is also stress induced....the second I get nervous/excited/stressed...I start to get sick. I take Lialda for UC and Urisdol for PSC. Eating healthy does help...trying to get better and just eating healthy...harder then it looks. So many short cuts that end up hurting me in the end
i recently had the craziest uc flare up and prednisone helped a bit but i only take a small dose, starting off on 35mg 1st day, taking 5mg off a day for a week and im roughly 65-70kg so it works out at .5mg per kilo, stress can do it, so staying positive is a help, im on a world trip and stress just goes with it and i got sick in the 1st week haha. but eating healthy keeps you balanced. that was my first very intense flare up of uc, ive had mild, but nothing like that, can anyone suggest experience in how to get back to normal, ive heard eating soups etc for awhile, or can i just start eating and exercising normally? cheers todd
They appear to go hand and hand. I was diagnosed with UC in September 2008. After continued problems an ERCP was done last April (2011) and I was also diagnosed with PSC. My UC is currently pretty well under control, but the PSC we're not sure about. Just had a lot of lab work done this week...we shall see.
Anyways, one BIG triggar I found for my UC was red meat (beef). As much as I love a good hamburger, everytime I would eat red meat I would get sick. It's been almsot 2 years since I had red meat and have seen much improvement. Not sure if anyone else has seen this as a triggar?
wow I was just diagnosed with PSC .. I have been relieved with knowing what's going on with me.. I will very very very much like your info offline on tips that I can do . I don't want to be on meds, I want to be healthy & willing to do whatever it takes to manage this disease. I sent you a request to friend , can't send you a direct message yet.. I hope to hear from you . .
Mona said:
UC, IBD or Crohn's and PSC seem to go together. I am completely off all my medications now and using diet and the such to improve myself. The challenge is controlling the GI (and body) issue to keep the inflammatory process down which seems to flare the bile ducts and ultimate liver.
You can email me offline as several people do. Since 2005 I had doctors shoving pills down my throat and radiating the heck out of me with tests and NOT KNOWING what to do when I was finally diagnosed (3/2010) caused me to PAY ATTENTION. It appears there are people who like to criticize others so I am happy to share with you OFFLINE. We are all so different but there are some basics we can follow. I am not a doctor as most of us aren't but I sure can share what I do and perhaps some of what I have learned the hard way can help you. I know transplant is the ONLY real TREATMENT (not cure) but I also know a transplant is not good. They just about have to kill our immune system to get it to leave the transplant alone as we are programmed to kill intruders. I know SOME say they've never felt better with that new liver but it is a tough journey. I try to keep my body part (and cells in general) healthy.
Mona: PSC and Crohn's. I was dying in 2009. I couldn't stand long enough to brush my teeth and I couldn't drive. I've gone from stage 3-4 to 0-1 recently and my Crohn's is in FULL REMISSION. Pharmaceutical free and loving life. Doesn't mean I don't have to stay ON IT every single day but I am very happy. My doctors are NOW true believers and support and encourage me. It is important to get doctors that PAY ATTENTION and care about results and NOT padding their pockets with Big Pharmaceutical monies. Have a great Day! I live in CA and it really is beautiful.
Tell us about yourself.
Is it Crixus?
Hi Mona,
I just wrote a long post LOL introducing myself I thought I hit add reply but it didn't show up? So here goes again.
I am 43yrs & freshly diagnosed w/ PSC actually it will be a week today. I was in the hospital for 3 days from Friday till Monday. I have been healthy all my life also work out all the time & I also train people too. So this sickness has worked on me psychologically to where I was so depressed. I can fairly say that my symptoms progressed over a 5 to 6 month period after I had my gallbladder removed in the last week of November 2011. Which was the confusing part because some of the symptoms I was having I figured it was due to my gallbladder being removed , like everytime I ate food I would get sick, bad cramps , had diarrhea to mushy stool not really a lot of solid stools. I also was losing weight & I didn't have an appetite much got to where I was actually scared to eat. I then would get chills where my body would tremble & teeth would chatter, this only happen couple of time .. Both times I was drinking something that was cold so I figured I was reacting to that... silly me. In Jan 2012 about mid month I was getting fevers like every few days my highest temp was 102.3 at the time I figured it was because I over exerted myself I treated the fevers w/ tylenol but moved over to Aleve gel caps which brought temp down. I started itching on my body in different spots no rash at all but felt itchy didn't know why that was happening either..
Still feeling all this was complications of my gall bladder surgery, especially after going to my PC doctor having a blood test which came back clear nothing alarming at all. So with me still having diarrhea or mushy poo seem like my food was just running through me. I was placed on cholestyramine powder Feb 20th & I also put myself on low fat diet. Well this helped some I could eat more & the itching was reduced. But yet after few weeks on the cholestyramine & adjusting the dosage to see what works best because the required dosage was too much seem like it made my stool mushy or even a foam type mess. I also had horrible stinky gas from the cholestyramine which then in turn had be cramping some & bloated I didn't really have an appetite as much. So I contributed my continued weight lost to that..
Fast forward 3 months later, the last week of May other symptoms started to present itself , first my urine started getting orange look to it, which I thought maybe I was dehydrated so when I dranked more water it started clearing. I went back to the ER on 4/27 where I had a panic attack not understanding what was going on with me but I felt something was not right just wanted to get some answers. Well when I went there they took my blood again, did a urine sample, & stool sample. After all that the doctor came back told me everything looked fine my liver looked good , kidney's was fine, no bacteria or infection showing up in my stool but the only thing I was slightly anemic for which he said it was so slight that nothing to be alarmed about that I should take some Iron supplements. Then basically he also said in no uncertain terms that maybe my problem was all in my head, he did suggest that I see a Gastrologist. So I went home encouraged slightly but still felt something was being overlooked.
Ok I went back to my PC explained what been going on also we went over in more detailed my blood test that I had done back in January w/ her which again was all clear. Only slight anemia that was with a big slight because she didn't feel it was nothing to alert me about. I was got my medication from cholestyramine changed to pill form Welchol because the cholestyramine got to where it bloated me so much & took away from my appetite. So after picking up the Welchol from the pharmacy w/ a shocking sticker price of $250 for which I found out I had to reach a $250 deductable on my insurance so when I get my refill it will be just a copay. I started taking the Welcol which did help some and I was back to eating regular foods, even could go back to real milk because I love cereal. I also was given Xanax which I cut in half take at night so I can sleep straight through w/o tossing & turning all night. I was still in the gym working out & having great workouts almost back at pre-surgery levels in all catagories. My appetite picked up , for some odd reason every morning I wake up very hungry. So I would eat a good breakfast always tried to eat some fruit with breakfast.
Ok lets fast forward to late may , more symptoms started to occur even though the itching had been reduced a lot I contributed to the Welchol , my urine started to darken , looking a orange to dark yellow. The final straw was I started to jaundice which alarmed my sister who then forced me to go to the doctor. Which I knew she was right so I went to the ER last friday. I was admitted prediagnosed w/ PCS but they admitted me assign me to Gastrologist who was coming in to give me ERCP the next day after my ultrasound. I must admit I was SO SCARED. But the hospital staff at Piedmont Hospital were fantastic, my GI doctor is great w/ great reviews online (Dr. Dale Holly). They treated me after my surgery in the hospital w/ IV fluids and antibiotics. They continued to take blood from me checking my levels & looking for any bacteria cultures which came clear. My billirubin numbers were going down I was responding well to treatment. Also the whole time while in the hospital I had an increasing appetite at all my meals 3 times a day also had snack at night like a turkey sandwich lunch box w/ fruit cup & sugar free lemon icy. I was released on monday after having a very encouraging talk with my GI doctor's PA because he was off work that day.
I decided to google PSC support board found this last night, & Mona I really was so encourage by reading your post , I made my 1st response here to you. I welcome any advice you have.. I do understand that everyone respond differently to treatment, medications etc. I read a lot on this site but also got off of it because some post was scary & I didnt want my anxiety to overwhelm me. But I did take a half Xanax to sleep last night.
On a good note it's 8:55am this morning I waked at 7:20am ate a bowl of rice check gluten free cereal w/ skim milk, a bagel w/ jelly & apple.. now having a bran muffin w/ cup of decalf coffee. I guess I'm still a little hungry. I'm not feeling sickly at all, wish I could go to the gym, but I'm at my brothers house in another state he's been a Godsend because he's been w/ me since my hospital visit now is watching all over me, treating me like a baby LOL. I am glad I have such a supportive family and I feel blessed to have found this board. My hopes for everyone the best and optimum health to sustain a normal life w/ all the benefits life have to offer. I want to be encouraged not discouraged I do believe the mind has a big role in your healing process.
I have also looked into the idea of meditation, what do you guys think? I looking for books & instruction on doing that.. I have downloaded Buddhist meditation app on my smartphone which I done from time to time. so we just see how that goes.
Thanks to you all for sharing and reading about me & welcome all your encouraging advice & compliments.
Crixus