Liver Biopsy

[DebE13]

Excuse me that this is not MC related but I trust the people here so figured it would be a good place to ask. Googling isn't always the best way to get useful information.

My son has to have a liver biopsy as soon as we can get him in and before he leaves for college in a few weeks. The doctor gave a slightly different explanation of the procedure than the transplant nurse did and now he is quite uncomfortable with the whole idea. Looking at the his labs over the past years the doctor was interested in some of the enzymes that are consistently elevated but normally not caused by the PSC. He is looking for another autoimmune disease- sigh. If they find he also has autoimmune hepatitis he will need to be treated for that in effort to prolong the life of his liver. He has no symptoms but he wants him tested. He said the treatment would either be prednisone or something new, budesonide. Well guess who is familiar with that? I didn't realize it was used for other conditions but I generally just lock into gut and thyroid issues. I told the doctor I was opposed to prednisone. I could be very misinformed but my past experience gives me the willies any time I think about that drug. Bad, bad side effects for me that I never want my son to experience. The doctor made note of the preference. I would assume this would be a long term treatment but again, I am ahead of myself.

My concern at the moment is the actual procedure. My son HATES needles which could be comical since he has been a pin cushion since he has been 16. The doctor told him they just use a numbing agent on the skin and that's it. Later, the nurse who works in the transplant unit explained it more like mild sedative in which you are still awake and a vikadin for those that are really uptight. Would it be similiar to what they use during a colonoscopy? I'm hoping it is because I know he'd be fine.

They also said they can go through the neck or the side. I read the side is most common but how is that determined? I don't think he would tolerate the neck entry very well. I wil have to make sure they are all aware of how stressful this is for him. He has been experiencing D since his return from a vacation in New Mexico which has me on edge. I prey this isn't the beginning of our issues for him.

It was very interesting to listen to him explain how how these autoimmune issues are genetics related and they believe are activated by something, ie:an infection. Sounds very familiar.........

I'm trying to keep focused on the learning because it's absolutley heartbreaking to be a bystander to all he is going through and not being able to do a damn thing. The only consolation is we aren't going through the bile duct cancer scare again.

[brandy]

Hi Deb,

I think the boyfriend has recently had liver biopsies (due to the liver abscesses.) I'll get a little clarification from him tomorrow. His went through the side.

Brandy

[tex]

Hi Deb,

I'm assuming that Brandy will be able to answer you questions, because I've never had any biopsies of that type, so I really don't know much about them. I have to say though that I don't believe that I would be comfortable having liver biopsies taken through the neck.

Where did he spend most of his time in New Mexico? I used to spend some time out there now and then. If he drank any water out of a stream while hiking in the mountains, for example, he might have picked up a parasitic infection that's causing his D. Water in wilderness areas might appear to be pure and clean, but giardia are very common in most of those areas these days.

Is your son GF? You might be interested in these articles about the association between celiac disease and autoimmune liver disease.

Celiac disease in patients with severe liver disease: gluten-free diet may reverse hepatic failure.

Elevated serum aminotransferase activity as an early manifestation of gluten-sensitive enteropathy.

Duration of exposure to gluten and risk for autoimmune disorders in patients with celiac disease. SIGEP Study Group for Autoimmune Disorders in Celiac Disease.

This is from a website by Sandra Cabot, M.D.:

Here are my recommendations for those with autoimmune hepatitis, primary biliary sclerosis and sclerosing cholangitis:

Avoid all gluten. This is predominantly found in wheat, rye, barley, triticale, spelt and kamut, but is hidden in many foods.
.......................................................................................................................
Avoid all dairy products. This means no cow’s milk and all foods containing it such as cheese, yoghurt, ice-cream, butter, cream, cream-based sauces and other foods containing milk.
.....................................................................................................................
Try to avoid high stress levels. Stress has a very detrimental effect on the immune system and it is well known for aggravating autoimmune diseases.

Sound familiar?

Gluten can be a culprit in some types of liver disease

Tex

[brandy]

Hi Deb,

I talked to the boyfriend. Going by what the boyfriend said he probably had something like this:

The doctor told him they just use a numbing agent on the skin and that's it. Later, the nurse who works in the transplant unit explained it more like mild sedative in which you are still awake

I think the boyfriend had the procedure done on day 2 or 3 of his 8 day stay. They went through the side. He had the numbing agent on the skin. We're not sure about the mild sedative. The boyfriend was taking morphine at that time so I suspect he might have had just the numbing agent.

The boyfriend was awake during the whole thing. I think it went pretty quick. He did not feel pain during or after the procedure. The boyfriend looked away during the procedure. He was totally cognitive afterwards when I saw him.

The procedure might have been done in the mri but the boyfriend can't remember/is not sure of this. He was stuck in the mri almost every day to put in his drains, adjust his drains, remove his drains....etc and everything blurs together.

I think it is a fairly low tech procedure. The teaching hospital across town sends a technician to the patients room and they do it in the patients room. The boyfriends nurse was aghast when I told her this as she did not think the procedure should be done in a non sterile environment.

[brandy]

Tex,

It is amazing how gluten can affect all parts of the body.

[tex]

It surely is.

Tex

[DebE13]

Thanks Brandy. It's nice to hear from someone who has gone through it. I got it scheduled today and confirmed he will be receiving the same drugs given during a colonoscopy so he should be properly out of it.

Very interesting links Tex. Thank you. I forwarded them to my son to read too. Better to see the source rather than just out of my mouth. Funny you should bring that up- but not funny at all. He just told me he has had alternating WD and loose stools since BEFORE his trip to New Mexico. Which has now been a couple weeks. He was hoping it would resolve on its own. Foul smelling. No stomach aches, no abdominal pain, no other symptoms but D. I'm glad of that but am scared that his gut problems have just been activated. Ulcerative colitis is generally what PSCers get but who knows. My mom has undx D issues too. I have to now try to get a colonoscopy scheduled within the next two weeks in addition to the liver biopsy. I feel like throwing a tantrum but know it won't do a darn thing. I think I will try immodium for him and get rid of all the dairy. I will have to pull out my soapbox again and have the gluten talk. I will have to look up his enterolab results again. I believe eggs and soy were ok, gluten and daidy were not. Although, both his father and I have thyroid problems so I don't care for the idea of soy being ok for him. He has not been willing to change his eating habits because he has felt no problems- until now. Now it may be too late. For a 20 year old male he is pretty thin- 156ish pounds. He doesn't eat much because the PSC has affected his appetite. He was tested for celiac when he was dx with PSC when he was 16 but who knows. I tested negative several times too. He was home since May.....the timing of it all stinks.

Tex, he spent most of his time in the Silver City area. The pictures he brought back were beautiful. He went with his girlfriend and her family and had a blast. I was happy he was able to have the experience because our travels since my MC dx have been next to nothing. Makes me sad but it is what it is- I don't travel well. Makes me even more sad to think he had manage D while away from home. They were in a remote area in the mountains- sounded wonderful. He said he knows not to drink out of a stream so that's a relief.

I am happy that we can talk poop. I'm sure it's the last thing a son wants to be sharing with his mom but poop is a pretty common topic at our house and pretty matter-of-fact. If it's not me then it's my poopy cat, haha. Who, by the way, has tapered of her meds and is back to normal.

[tex]

Hi Deb,

It sure does sound as though you're on the right track to schedule a colonoscopy for him. I assume they'll retrieve some colon biopsies, also.

I once backpacked into the Gila Wilderness northwest of Silver City (years before my symptoms began). It is indeed beautiful and rugged country. I'd love to do that again, but there's no way I could do it now.

Well, at least your cat's symptoms are under control, so that's a good sign that you know what you're doing.

Tex