Newly diagnosed with Colitis ulcerosa, possible psc

Hi, I’m new here. I read lots of your stories, what a wonderful supporting group this is! Please excuse my English, it is not my native language and I sometimes have troubles finding the right words! Our son was diagnosed with colitis ulcerosa with rectal sparing last friday. Out of the blue we also had to hear that all his liver levels are high (GOT: 82, GPT 207, Gamma -GT 116, AP: 234) and psc is highly possible. Ultrasound was not showing anything, they now want to do a MRI. But since he is in his last weeks studying before his exams he postponed it to the end of January. He has - other than diarrhea and abdominal pain after dinner sometimes - no other symptoms. He does lots of sports, works and studies full time - enjoys and loves his life! We are all shaken by the diagnosis. CU is already a lot to handle, but also psc? From all of us in our family, our son is the one who stays calm and emphasizes how good his life has been so far - he has to study for his exam so I am happy he can take it so calm. I try to read everything I can and stay positive but it’s so hard sometimes. It helps me a lot to read your stories! I hope to find peace by learning a little bit more every day!
Thank you for listening!
Caro

Caro,
I’m am glad you found this PSC forum. We certainly understand what you are saying and where you are coming from. It is not uncommon for a patient with ulcerative colitis to also have PSC. Not all PSC patients have UC but some do. We have a number on this forum that do and had successful transplants in the end.
It is important in all seriousness for your son to not take this lightly. Once the diagnosis is confirmed please get him under the care of a hepatologist associated with a good transplant hospital. Routine blood work will be important to track the progress of the disease as well as MRCP’s once or twice a year (MRI of the liver and surrounding organs). The MRI they are wanting to do will help to give a more accurate diagnosis of whether it is PSC or not. They may also, depending on his blood work need to do an ERCP. This is where they go down the throat endoscopically and up into the common bile duct to check out his left and right hepatic ducts. With PSC you will see beading in those ducts and over time they can cause strictures to block the flow of bile to the gut. It is important with the ERCP to be able to open those passages back up to allow as much bile as possible to flow out. The more bile that backs up in the liver the quicker the liver cells die and cirrhosis develops.
I realize the possibility he has PSC is a frightening thing for any family, but you must not give up hope. There is help and there is hope. In the meantime, he needs to be encouraged to live his life to its fullest. This is not the time to hide in a bubble, but one must live their life. Regular exercise will be important to maintain a good core strength physically as well as a healthy diet.
Please let us know how the final diagnosis goes, and do feel free to ask any questions that you have. We are very willing to help you through this process. The more you and those around your son educate themselves about PSC, the calmer you will be in your hearts. I do recommend that your son take a trusted family member or friend with him to each of his appointments who will be his advocate when he may not be thinking clearly or willing to do what he needs to do to get the best care.

Mark
PSC 2011, R-PSC 2021 / Liver Transplant 2015

Thank you so much Mark for your finding the exact right words for me to calm down a little bit. I see the urgency to see a liver specialist but he wants to postpone it for another four weeks, I think I have to accept it. But luckily he is very open and without asking us arranged for an appointment with his gastro - doc with him and us so we can go through this together. Fortunately he does lots of sports and I will have to inform myself more about a proper diet, he already eats very healthy but maybe there are things he could do specially for his condition. He already tried intermittend fasting (helped for a while) and cutting off gluten (also helped for a little while).
Thank you so much for being here for all of us. I think doctors can help a lot but they have not experienced it as you all did and still do. I am overhelmed of all the hope you all manage to spread, when you just google the things you read are darker than dark. Here I found some light thanks to people like you! Have a wonderful day!

Caro,
Four weeks will not make a difference. It’s not critical at this point so he has time. Do not be over fearful. You guys face this as a family together and be a strength an encouragement to one another. This disease is long term for most. I hope he will pursue his dream of becoming a doctor. Don’t let PSC stop him. It’ll get his attention when he needs intervention. Although diet is important don’t let it control you. For me there were times I couldn’t even stand the smell of food cooking. Sometimes all I could eat was fast food. Not every day but the key is don’t go overboard with a special diet. It doesn’t have much impact on the PSC. Now I’m sure the UC requires special attention which he’s already used to dealing with.
I trust your family has a Merry Christmas. Don’t dwell on the illness but cherish the love of family and reason for this time of the year.

Mark

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Caro,
His diet will likely affect his UC far more than with PSC. I had UC in 2006, and what we eat can trigger a nasty flair, but it is so individualistic that what works for one person does not for another.

With the UC and PSC, make sure his doc for his UC, the GI, communicates well with the hep
atologist when you select one. Together, they can make a good team.

But emotionally, be prepared for a roller coaster ride. He will have to learn to recognize symptoms when they appear. And they will. Luckily, PSC generally progresses very slowly. UC is a different animal.

It is one thing to be the patient, but another to be the parent, when you have much less control.

I hope his UC can get into remission.

Do your research, but be careful not to reach information overload.

Jeff

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Hi Caro,

My daughter was diagnosed with PSC and UC in 2013 (she was 13 years old back then) , in particular UC was quite bad. We have tried pretty much everything, traditional ‘treatment’ ie steroids, immunosuppressants, sulfasalazine, colestyramine, asacol. We have even tried for 8 months the SCD diet (gluten free, starch free etc) . The SCD diet helped a bit with the UC symptoms but the PSC was at its peak ( ie GGT 717, bilirubin total 29, ALT 183 etc). Since she has been on Vanco, LFTs normalised, her colon healed, no UC anymore. She has been on Vanco since 2014. MRCP scan in 2018 showed no inflamation in the biliary ducts anymore and colonoscopy showed no active UC ( colon healed completely). To us, Vanco is the only treatment that is working.

Hope that helps,
Daniela

Thank you Jeff, for caring and providing useful information! I am so grateful for all the advise here! PSC was something I have never heard of before and when you start to google, the answers are not very hopeful! Here I found so much information and hope, I’m glad for having found this group! But I’m glad you reminded me of not to read too much. It was very good in the beginning, now I need to slow down a little bit! From all I read and what you confirmed: It’s different for everyone and it sure is a roller coaster ride!
I think we are in very good hands, his gastrodoc and hematologist work together very close! At the moment my son seems to respond well to mesalazin, which I try to interpret as a good sign. Here they say it’s better not to completly heal the inflamation in UC as it keeps the psc from progressing. Ever heard of that? I’ve never read this anywhere.
Have a wonderful day
Caro

Daniela, thank you so much for your text, that gave me lots of hope! You hear the diagnose (which still has to be confirmed) and you think it’s the end of (a normal) life for your child. Everything you can think of, every single minute every day, is PSC and UC, at least at the stage we are right now. I am sure that gets better with time and it helps a lot to read from people in the same situation and how they deal with it. So I really appriciate all the nice answers I got - they helped me over these first hard days.
I read a lot about Vanco but I guess we will have to fight for it…It’s not standart here and I will have to read everything I can to convince them to at least give it a try (and hope it does wonders which will convince them)…
Have a wonderful day,
Caro

Caro, I do not know how docs handle patients with both PSC and UC. To me, that would be like trying to herd cats. But docs do it somehow. And some patients handle it better than others. What causes one UC patient to have their UC in remission is one thing, but don’t recall any comments about trying to balance meds between the two diseases. Would not surprise me if there was a high degree of a balancing act.

H Caro,

You do very well with English! Colitis Ullcerosa is Ulcerative Colitis in English. I was diagnosed with Ulcerative Colitis years before the doctors realized I had PSC. I support all that your son is doing with sports, school and just loving life. Keep going! I never let diarrhea and cramps stop me! Your son knows when he needs to take a break, lay down perhaps for a while until he is ready to take off again! Let him be all boy.

I was not diagnosed with UC while in my youth. I was a man when I found out. It explained a lot of things that happened to me in my youth and early manhood.

It is common to have liver function blood tests twice a year. Ultrasound and MRI can show scarring of the liver. Sometimes, they will do an out patient procedure called a liver biopsy so they can see if PSC is present.

It is hard being the parent of your son. Try not to fear. Be very encouraging and supportive of what he wants to do. Help him to listen to his body and to slow down and take it easy if his condition flares up. Keep a diary to note if he has any flare-ups due to food. For example, I drank large quantities of milk as a youth. Quite suddenly when I was about 30 years old, I would get horrible diarrhea after drinking a glass of milk! I had become intolerant, so I had to limit myself to small portions fo milk to have happy intestines. Over time, I had developed a list of trigger foods that gave me diarrhea.

This is a very good place to list you story, ask questions and learn about how UC and PSC are closely linked together.

Paul