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More diagnosis - more unknowns


#1

My 28 year old son was diagnosed in spring 2018 with UC and PSC. We are currently under the care of an amazing team of specialists at Virginia Mason in Seattle. Despite complete control of UC symptoms on megadoses and enemas of Mesalamine/Apriso he is still testing with very high inflammation markers and ALP over 500 in addition to them noticing that his pelvic lymph nodes have been growing through each MRCP scan. We just did a liver biopsy and full torso/abdominal CT scans. Results are that he also has autoimmune hepatitis and his PSC is at level 2 (not 0 as a fibroscan showed three months ago, despite no new strictures or high bilirubin counts). His hepatologist has just prescribed Ursodial. The lymph nodes may or may not be associated to his UC but since that seems to be under control, we are being referred to a hematologist/oncologist for more testing. At this point, my son has pretty much asked to be on a ‘need-to-know’ basis because the general stress coupled with his autism makes for major shutdowns. Luckily, we are used to being very involved in his general healthcare since his high functioning autism makes him hyper-focus and miss important details, so taking the reins is nothing new to me. Just reaching out for commentary/support - has anyone had similar experiences?


#2

Parents can pay a heavy price when their child has psc. To have to deal with both uc and psc can be harrowing. I’m glad he is in the care of a hepatologist and that his uc is controlled. Mine never could be controlled for any length of time.

There are quite a few parents on this forum who can provide a lot more advice than I can about dealing with their child’s illness.

Parents?


#3

Thanks for the support Jeff. We do also make sure he is eating homemade fermented foods or drinking the fermentation brines daily. Making a lot of fermented veggies is a bit of work so I’m glad I’ve been able to be home during the last year while we were learning the ropes. I don’t know if that’s part of the trick with the uc but we’re not going to quit and test it since I know it’s better for all our guts lol!


#4

Corina,
Thank you for your post, and thank you for being there for your dear son. I can understand in his condition desiring to be on a need to know basis about his health. It is important to encourage him to stay as active as possible amidst the illness. The more normal his activities are the better for him. I know that you are wanting him to eat as healthy as possible and with the UC I know things are more complicated, but I encourage you to not mother him to death when he decides to just eat some junk food or something that’s not in the normal course of your home meals. Patients with PSC sometimes just can’t stand the smell, taste or look of food when the disease reaches a certain stage and so you just let them eat what they want. In late stage PSC protein intake is critical to try and maintain muscle mass. It’s also important that he get in some exercise each day, or at least 5 days out of the week. Even if it’s nothing more than walking 30 minutes at a time. Core strengthening exercises are vital to be prepared for transplant surgery when that time comes.

Urso is also good to try and keep the bile thinned for better flow. And as I’m sure you are finding out, something I call a bile-dump can occur, when you get too much bile and then you are dealing with diarrhea. I always kept Imodium caplets on hand and took them at one point about every day just to keep things under control.
If there’s anything we can do to further assist or offer insight please don’t hesitate to ask.

Mark
PSC 2011 / Liver Transplant 2015


#5

Thanks Mark for the tips - good advice to remember. Don’t worry though - although I make the fermented foods for him he is still in control of his diet and eats what he wants. (He’s got his own pantry and fridge even though he’s at home) Eating with his dad and I is always just an option. I am so glad you mentioned the bile dump - since we were notified about the urso via the patient portal we haven’t had a chance to discuss it with his hep Dr. (She’s amazingly informative and thorough when we meet with her).


#6

Hi! Sounds like you are doing a great job!
I am also a parent with a son with the same diagnosis. Although they are not sure about the psc anymore as the mrcp we took came up with nothing. We got the diagnosis (but not final it seems) this spring as well, he is 12.

Anyway, I want to say that it’s great you do fermented food for him! It is so great for our guts. My son doesn’t eat a lot of it, but some. I make a bread for him with sourdough where I lay all the ingredients in a 12 hour soak with sourdough thinned in water. We are in remission of uc now with prednisolon, imurel and Asacol.

I am new to this so don’t have any advice, but wanted to say I think fermenting food is a key. Have you tried “water kefir”? It might also be called “fruit kefir”.


#7

Annie,

Hopefully you are seeing a hepatologist - our earlier local GI MRCP scans were very different from what we just found out through the liver biopsy.

I do all of our fermenting in special anaerobic jars and ferment sourdough in my jars for three days in the fridge to break down all gluten. Some folks are worried about histamine in fermented products but there are lab tested differences between ferments with oxygen available and without (IE: water crocks and airlocks) *No judgement here - just the way we do it. We do milk kefir but Ian doesn’t like the taste of it so he just eats the live grains with each new batch I drink, which he can swallow quickly.

Corina


#8

Have you looked into oral vancomycin? Your son is still early with PSC, young, and has UC, and seems like an ideal candidate. Do a search for oral vancomycin on this site and you’ll find many amazing stories of how well it works, often reversing the damage and normalizing all the numbers. My daughter is 20 and was a the brink of cirrhosis and LFTs 10x higher than normal and after two months, all levels normal and her liver is healing. Do a google search for Dr. Ken Cox and his article “The Case of the Disappearing Liver DIsease” to discover the history of it. The problem is finding a doctor willing to prescribe. There are only a handful of non-pediatric doctors. Ours is in NY and will be happy to share the name if you can’t find anyone closer. Good luck!


#9

Yes, we are under the care of a great hospital.
I am going to ask for all the documents because I only understand bits and pieces as to why they suspect Psc. First it was the way the UC looked during the colonoscopy, then it was lightly dilated bile ducts on ultrasound. I haven’t exactly heard the results from the biopsy. But then the mrcp now showed nothing. Anyway. This is not about us.

Very interesting about the fermenting without air. I havre read that it may not be the gluten, but other stuff in the wheat, that is what they respond to. Don’t know the English names. But by soaking it, it reduces.


#10

Thank you for the recommendation. I believe his Dr brought that up at our last visit. With the whirlwind of other specialists I think we just got off topic… I’ll bring it up at our next visit.


#11

You have an amazing doctor if they believe in vanco and are willing to prescribe! Please keep posting about your story so I can see if your son receives it and how he is doing. Good luck!


#12

Joki - we are very fortunate to have been referred to her! For anyone near Seattle (and by ‘near’ I mean we travel 5 hours one way) we see Dr. Asma Saddique at Virginia Mason GI Dept (don’t be fooled by the “GI” - the department houses specialists of every variety in anything to do with the GI system - not your run of the mill GI docs!)