Discussions By Condition: Liver conditions

Sclerosing Cholangitis

Posted In: Liver conditions 6 Replies
  • Posted By: Anonymous
  • August 26, 2006
  • 07:02 PM

My husband has sclerosing cholangitis and I am frightened.
He is in the shower vomiting, before he got into the shower he was shaking so hard, I couldn't get him warm so I put him in a hot shower.

Someone help me

Cherry Patterson

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6 Replies:

  • I hope everything worked out ok. I did not know that those were symptoms of sclerosing cholangitis. is his disease advanced at this point or was this the first type of symptoms you saw. I dont have any information for youo unfortunatly but i wish you the best and hope everything ended/ends up ok.
    Anonymous 42,789 Replies
    • January 20, 2007
    • 05:06 AM
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  • hiI am sorry to here of your husbands condition and hope this is not to forward of me.My wife has just been diagnosed with PSC early stages no symptoms yet just high LFT blood readings. Do you know how long it was before you realised that he had PSC till he got to the stage he is at just now. You dont need to answer these questions, i know you are looking for answers like myself. thankyouJohn
    Anonymous 42,789 Replies
    • February 21, 2007
    • 07:34 PM
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  • Hi,Im a 39 year old female who was diagnosed with PSC on 28th December 2006. It started march 2004 when i lost a lot of weight very quickly, always tired, irritable/moody. Routine blood tests showed High LFT's and took a further two years to diagnose. Had Liver biopsy, MRI scan, colonoscopy and loads of blood tests. In June last year started getting first pain/discomfort in upper right side under the rib cage, then the itching started and became more tired to the point I needed afternoon naps. In January this year was prescribed Urso Acid tablets which seems to have lessened the tiredness and itching. Still unsure of full symptoms as doctors seem to be vague about telling me the prognosis. Doctors say illness could be the same in 10 weeks or 10years, and may or may not need transplant. If any one could relay any information regarding their symptoms or situation it would be greatly appreciated.ThanksLisa
    Anonymous 42,789 Replies
    • February 26, 2007
    • 01:51 PM
    • 0
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  • Age 61, male. I have stage 4 Primary Sclerosing Cholangitis, Ulcerative Colitis, splenomagly and auto-immune disease. I am in the system at a transplant hospital in Milwaukee. Fatigue, dry scratchy eyes, lightheadedness and bouts with confusion and irritableness are my symtoms. It can be a real downer.Having said that, DON'T GIVE UP. Nourish your spiritual self. Try to be more loving. Cherish every day you have. Remember the joy and freedom of being a child and claim it as your own today. Be grateful for all things big and little. Follow your doctor's orders. Realize when you can't do more that you have to rest. Be patient with yourself. Try your best to not fear the future. May God bless you and keep you in the palm of His/Her hand.
    Anonymous 42,789 Replies Flag this Response
  • Hi there :))I am 32 years old and have PSC. I was diagnosed after my son was born but since birth I have been a long time survivor (the eldest in Canada) of Biliary Atresia, which is a congenital liver disease where the bile ducts are missing or damaged on birth. I am the eldest survivor in Canada and also have my native liver.I can tell you this. I am being followed by a liver clinic in Toronto that specializes in all diseases liver related. They have put me on the urso and another drug called cipro (antibiotic to help with infections that occur regularily outside the area where the bile ducts are - though I have none).I have no jaundice or itching but the fatigue i experience is overwhelming and doesn't seem to be getting any better. I have had many tests alongside the regular LFT's they do. There is permanent cirrhosis already because of living with the Biliary Atresia since birth but other than the fatigue, my symptoms are not severe. If you have sever symptoms like vomiting, upper pain in the right side of your body, coca cola coloured urine or grey/pale stools you should go to the hospital IMMEDIATELY. Tell them of your disease and make sure if they don't know what it is, you tell them to get someone who specialises in hepatology to look at you.Other than that... sadly, there is nothing we can do except wait and take care of ourselves. Eat well (very VERY important as the fattier the food you eat and the higher the protein the more strain it puts on your liver to break it down). Take vitamin D and calcium/magnesium to help with bone/arthritis (these supplements help because the increase in bile in the system results in a decrease of these supplements in the body. I you haven't already been referred to a specialist, get a referral and make sure they monitor your progress at least every 6 months. If you don't know something, ask your Doctor to help you understand. My memory has been affected quite a bit so sometimes I have to ask them to explain things again... and this is OK. There's nothing wrong with it. Don't be ashamed that you are suffering but don't live in it and a future that is probably going to end in transplantation but could be many many years from now. I've lived with liver disease all my life... should of died long ago but haven't. Every day is a gift. I have horrible thoughts sometimes. I feel sorry for myself sometimes. I cry sometimes and I worry sometimes. During those times... it hurts more than I'd like to admit... but no one else can bring us up but ourselves and in the end we all bounce back from those hard times. The most important thing, I find, is to admit that these moments happen now and will continue to happen forever probably and beating ourselves up for not being stronger or braver is just hurtful to our souls.I don't know much, honestly, but I know that if you find good health care and good self care you can make it through anything. Even if you don't have a great support network (mine's not so perfect because I think my entire family is too scared to admit a problem and I try not to worry them), you can find solace in forums like this and in your own ways. I write. It soothes me. Some of my words are horrible and unshareable (is that actually a word... don't think so, hehe) I comfort myself by knowing that by writing I get it out of me and onto paper. Find something that soothes your soul (reading, music, art, nature, letter writing... anything you Love doing) and you may find salvation you never knew you had available to you before.That's the best I can do to add my two cents to this forum. Long winded is my name and surviving is my game. Take care and keep smiling. Thoughts and prayers to all of you out there dealing with this.Namaste,Sheri
    Anonymous 42,789 Replies
    • January 30, 2008
    • 07:49 PM
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  • I pray that your husband is doing better. I am a black American female (41), diagnosed with PSC (09/2007). I've had stents placed and removed about 4 times in the last 6 months. I don't know what stage I'm in nor do I know why I've had 7 ERCPs. The first ERCP resulted in pancreatitis. I have very high cholesterol and blood pressure and LFTs. I eat healthy and do some sort of excercise 3 times out of the week. Jaundice comes and goes and so does the pain in my right upper abdomen (under my rib cage) that sometimes radiate to my back or across to the upper left side. Other than what I've stated how do I decipher the symptoms of PSC or just "getting older" pains.Any information helps.greatchick
    Anonymous 42,789 Replies Flag this Response
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