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Primary Sclerosing Cholangitis (PSC) - Online Support Group

My husband´s story


#1

Hi everyone,
I joined this forum for my husband who doesn´t speak English well enough to participate. We have already found lot of useful information here that gave us hope.
He is 34 and has just recently been diagnosed with PSC, although there have been signs pointing in this direction for 10 years.

He was diagnosed with UC in 2006. UC has mainly been under control when it comes to symptoms, but colonoscopy shows otherwise. He has flare ups once a year when he has to take Prednisone for couple of weeks. For the rest of the year he manages with Sulfasalazine.
In 2008 he had his first,(what we now know) cholangitis attack with high fever, chills, itching, dark urine,abdomen pain, nausea, and vomiting. It lasted for 2 days, spent 4 days in hospital. They concluded it as food poisoning. All of his liver enzymes were pretty high (around 500-600 U/L), with bilirubin 2.5 mg/dL. Enzyme values were back to normal couple of weeks later.
He was doing fine for another couple of years, with enzyme values rising (twice the norm) and then dropping back to normal. He started having night fevers, chills, became more tired but all the symptoms were always connected to his UC.
PSC attacks came back in 2012 after very stressful period caused by my complicated pregnancy and premature baby. He used to have really painful PSC attacks about 3x a year with all the symptoms mentioned above. Since he was not taken seriously by his doctor he refused to go see one once the attack came.
Things got worse this year. Since the beginning of the 2018 he has already had 4 attacks, went to ER twice, liver enzymes were high in March AST,GGT,ALP in 500s and ALT was 1100, bilirubin 2,5. They sent him home after giving him something like Tylenol. Fortunately his GI got concerned and found him a liver specialist. He had another attack in May with the same results as in March. His blood work was better in between but still above the norm (in 300s), bilirubin down to 1. His albumin is 42 g/L, which we learned is good news.
His liver doctor recommended ERCP and biopsy, so we will have more info in a month or so. Waiting is the worst for both of us, but in the meantime we try to educate on this topic, so we can ask questions during the next doctor´s visit. Having two small children we pushed the emotions aside, concentrate on the facts and deal with it as it comes.
Thank you for reading his story. Kat


#2

Hi Kat,
Sorry for the roller coaster ride your husband has taken. I’m glad to know he’s now under the care of a hepatologist. If the hepatologist who is a specialist in the diagnosis and treatment of liver disease is recommending an ERCP I would certainly have one done. This is a procedure that is a necessary tool to give the PSC patient better quality of life and hopefully delay transplant. I would caution you though to only use the advanced endoscopist that is tied with the transplant hospital that does these procedures every day. Make sure they don’t get a resident, new doctor, etc. to work on your husband. This is a necessary but invasive procedure and you need him in the hand of an expert in this procedure. Whatever you do, don’t ask your local GI to perform the procedure. I hope it goes well. Let us know if we can help.

Mark


#3

Hi Kat,

I’m sorry that you two are having to deal with this all too. It must be so hard with young children added to the situation.

I used sulafasalazine for many years to control UC too.

I would agree with Mark on the importance of an experienced Doc doing the ERCP. I had a real problem once with someone that did maybe a few a year. The Doctor I have used most recently and his team do a few a day most of the time. BIG difference!

Please give your husband my regards. You two hang in there and keep moving forward!
Doug


#4

Welcome to the group! It’s very informative to have all these opinions and support! I had 6 ERCPs a few year ago at age 35. They definitely helped me feel much better. I have Crohns and PSC and I take Lialda and Ursodiol daily. Getting a good GI and Liver Specialist is vital! If he feels like crap, go directly to the ER. He needs the correct meds to keep everything under control. Regular colonoscopys are important too.
Take care


#5

Kat, psc is known for producing roller coaster rides. Glad you are doing research to learn about this disease, as knowledge is power.

When the ERCP is done correctly, it is a wonderful diagnostic tool, and can clear blockages, add or remove stents… But it can produce some side effects that are not good. I have had 4 or so over the last several years with only a sore throat as a result.

Jeff


#6

Thank you for the support. I haven´t been active because of moving and the stress that comes with it.

We had the last visit with a hepatologist yesterday and it was rather confusing. My husband had one more attack in July. He refused to go to ER, so there was no blood work done. Hist last blood work is from twoo weeks ago and all the results are normal. Based on the latest reasults hepatologist crossed out PSC and says its gallstones. He has still not seen MRI or ultrasound yet. All the doctor did was one blood work. We did have the same situation in the past with normal blood results between the attacks. The doctor says that if the liver enzymes are not increased all the time it cannot be PSC and it has to be gallstones. DO you all have the same infromation? I tried to talk to a doctor but he did not really listen to me. On the other hand my hubsband refused to talk to him at all.

My husband was checked for gallstones couple times in between attack and they were never confirmed. As the stress has passed my husband started to feel better.

I want to be happy if the previous diagnosis of PCS was incorrect but somehow it is hard to believe it when it was based on one single blood work. When we look back at his enzymel levels in the last 3 years… 15 out of 21 were increased significantly. But the blood work comes from a different doctor so the current one did not pay attention to it.
Thank you for the explanations.


#7

I am surprised the doc think he can diagnose psc through bloodwork. That is best done by an ERCP or MRI.

Any other thoughts out there?


#8

I completely agree. ERCP is the gold standard for an accurate PSC diagnosis. The patient needs to be sure he’s seeing a hepatologist not your local GI!

Mark


#9

Thank you for your opinion, I think the same. My husband is seeing a hepatologist. Problem With ERCP is that there is no such a specialist in my country who does it on daily basis,so they have one coming once a from the neighbouring country to do the procedure if needed. Also insurance companie refuse to pay for the procedure, if it is not a life treathening situation, so they perform it only in urgent cases.