Hi. This is my first time posting anything. I have read many posts and am thankful for all of you. My story is very long, I am sorry but I just need to get it told.
My situation is different than all of yours but my symptoms are very much the same.
In 2003 or so I was diagnosed with a Choledolchol cyst and was told that the cyst has the potential to turn to cancer. In 2007, I opted to have surgery to remove it. Surgery was successful and I went on with my life.
2014 comes around and I start having periodic fevers, fullness and RUQ pain. My GI MD (who I work for) stated that it must be viral and IBS since I’d feel better in a day or so. I dealt with it for a few months then in June, I had labs done and my alk phos was 1000. My GI doc sent me back to the surgeon due to stricture at surgery site and it was decided to treat me with percutaneous tube since I couldn’t have ERCP w/stent. I was told that they do this to stretch the stricture for a year. Usually patients have to come back every 3 months to exchange tube So I had the tube placed externally/internally. I ended up in the hospital with sepsis for a week. They upsized my tube then 3 weeks I felt like crap again so I had to go get tube upsized again. I ended up with 8 tube upsized, another bout of sepsis, then had to have a 2nd tube placec. They decided I needed a redo of the 2007 surgey, which I had done and was started on Ursodiol. And I did good for a year, labs good. Then in 2016, it started all
over again with severe chills, fevers, pains, nausea, etc but the episodes would only last a day or two. My GI MD (again who I work for) kept saying that it could not be cholangitis because it resolved on its own and my alk phos was always stable. After having the recurring episodes, I decided to get a second opinion from Mayo Clinic in Feb 2017. My alk phos at Mayo went up to 260, haf MRCP and hepatologist found that I have Secondary Sclerosing Cholangitis due to recurring untreated infections which caused inflammation and scarring in my intrahepatic ducts. She gave me a rx for cipro and told me to take it whenever I get the fever,chills, etc. I took cipro in March and have done good since other than chronic fatigue, periodic itching and some aches/pains. Then it all started again today. I started on Cipro when my temp hit 100.5.
I know that many of you have the same symptoms. It is so scary when the fevers, chills and uncontrollable shakes happen. I know I have PTSD from all of the fevers, infections and bouts of sepsis. I feel so helpless when I get like this and I feel bad for my family to have to see my like that.
Does anyone experience muscle spasms during the flairs? I get this weird feeling in my gluts and hamstring and can barely walk at the time. It all started with the sepsis infections. I never felt so horrible until then but now every time I get the episodes, my muscles spams happen first then the uncontrollable shakes/chills, etc.
How often do you get infections?
Does anyone else have SSC?
Sorry for the long story. Thank you for letting me tell my story.
It is very helpful to read and learn!
Sorry to hear of your difficult journey. I cannot speak to most of it. However, I wondered what you do when you get the chills. I find that exercising really helps prevent chills, particularly if it’s done in the sun. Also, eating and exercise can help me to stop the chills once they’ve started. Do either of those things help you?
Secondly, I wonder if you stretch your hamstrings. By lying on my back and keeping my legs at 90 degrees angle to my back, I can stretch them in the morning.
In general, exercise helps me cope with the stress. Perhaps you can let us know your feelings on exercise.
Dear TamBam99,
Your story is well-written. The details you describe are very recognizable to me and, I’m sure, others. Secondary or Primary, it’s no picnic to have to deal with medications, doctors, procedures, hospital stays, let alone how awful you feel most of the time. It sounds like you are prepared with Cipro when you need it. I had Rifaxamin to take when a fever broke out. One time, the symptoms came on and I went into liver failure. A trip to the hospital resulted in IV Prednisone and IV antibiotics. I recovered quickly, but learned I also had a c.difficle infection in my intestinal track. That was difficult to cure. It took IV Vancomycin to get rid of it.
I received a liver transplant in 2012 and am doing fine. My immune system is weak. I get muscle spasms, body pain, stiffness and cramps, chills, etc. My liver now works perfectly, and now I am so much better. I know I will have bouts with diarrhea, gut cramping and tiredness the rest of my life. The symptoms subside quickly after the diarrhea has ended. I tend to my daily chores, listen to what my body is saying and lay down to rest when I am real tired. I used to get upset with myself when my day was not as productive as I wanted. My thinking changed about this. Now, I deal with how I feel and if the day is wasted, I just conclude there is another day tomorrow. Physical exercise each day helps make you feel better. Just walking is good. My doctor has me taking calcium citrate daily to keep my bones strong. He says 10 minutes out in the daylight activates vitamin D, a necessity for people with PSC and SSC.
On the psychological side of PSC or SSC, your recognition of something akin to PTSD is right on. My Hepatologist’s nurse asked me if I was depressed. I thought about saying, “I’m fine” but realized that would not be truthful. So, I acknowledged I did have depression. The nurse said any person with a chronic, serious disease that denied being depressed was lying to themselves. Depression affects everyone with chronic disease. Admitting it makes it easier to deal with it. For short periods of time, I would take Zanax, which helped a lot.
PSC/SSC develop over years and for many, drug treatment and procedures will keep a diseased liver working for years, if not decades. For me, I ran out of time and medicines were not working. I was one of the patients that needed a transplant. Now, I am PSC free!
Keep informed about the status of your disease and ask if they see a need for a transplant in your future. It’s a whole different discussion about transplantation. Not everybody needs it. Have that discussion with your doctor so you know where you stand. Deal with the symptoms as best you can. Resist letting them take the joy out of living.
Best wishes and prayers,
Paul
Thank you for your advice. I need to get back to exercising, that would help for sure. It’s hard to get motivated. I work full time and by the time I get home I am so tired. I know exercise will help.
When I get the fever/shakes it really knocks me down for a few days. When it starts, I drink lots of water, take Advil and rest. Now, since I got 2nd opinion, I take an antibiotic to try to prevent further scarring/beading in my ducts.
Paul,
Thank you for sharing your journey. I am happy to hear that you are PSC free. I hope that you continue feeling better every day.
PSC/SSC sucks, I pray they find a cure!
I too have had 2 bouts of c dif 2 years ago. I pray that I never get it again. That’s why my GI MD didn’t prescribe antibiotics for me last year and now I developed SSC due to repeated infections scarring my ducts. I had 8 bouts of the “fever episodes” over the last year. And now the only thing I can do to stop progression is take antibiotics when I have to. I do take probiotics daily (ever since the c dif) and so far so good. 
It is very helpful to read, learn and share information.
Thank you for your encouragement!
God Bless,
Tam
TamBam99,
Just one piece of advice regarding pain medication. With liver disease you really need to avoid NSAID’s completely as it just increases damage to the liver. Drugs like Advil, Motrin, Alieve, Aspirin and such are all NSAIDS. My hepatologists have told me that I can take up to 3,000 mg of Tylenol a day. That’s 2, 500 mg capsules, 3 times a day as needed. Hope this helps.
Mark
Thank you Mark, I will keep that in mind. I try not to take advil very often. Tylenol doesn’t do much when I have the “fever episodes”. I will try Tylenol again next time, maybe it will work with the cipro.
Thanks again!
Tam
Paul, I also take alprazalam when I am going through the little blips of SSC. I find that it helps s great deal. It definitely helps me rest and relax. Thanks again.
The secret to exercising is to do it in the morning before the day starts. Preparing part of your supper in the morning can help you prepare in advance for how you will feel when you get home from work. For instance, while stretching in the morning, you can have some corn and potatoes boiling on the stove. Then when you come home from work, you can put some chicken breasts in the oven. After supper, you might rest a bit, and then exercise. There is a sacrifice. Less time for television and socializing.