That sounds an awful lot like hepatitis. There are different kinds of hepatitis, both infectious and non-infectious. I think it needs to get figured out promptly.

The good news, I guess, is that a gastroenterologist would be a good choice, though a hepatologist (subspecialty of gastroenterology) might be best.

Crap!

Can't any of us get cut a break?

Hope that this gets figured out quickly...nice for your return home, isn't it?

Take a last breath of good sea air, go for a long walk on the beach.

Keep us posted on what happens

Sharon

All symptoms of something going on with his liver. Whatever it is, it needs to be addressed right away. So sorry....hope he gets it resolved quickly.

Possible gall stone or blockage, maybe?  

Thanks everyone.  Jeffrey had an apt. With surgeon today so he ordered a bunch of blood work, and a ct scan of the upper abdoman. (?). Looking at bile ducts.  It's funny but when he was 300 lbs he had fatty liver disease.  A few weeks ago he was seen by a hemotoligist because his, I think, white blood cells were high.  Could all be related.  I'm anxious to see the results.  I might make it home in time to take him for the scan.

just when I thought things were going fine.  

Scott, I know nothing about hepatitis.  How would he get it?  I just know he was vaccinated for Hep C and I think Hep B when he was younger.  Crap!  More stuff to worry about!

dianne

Hepatitis is liver inflammation, just more advanced. Long term fatty liver disease can cause it. Even a blocked bile duct from a stone can cause it, or side effects from various drugs. Simple blood tests can rule out infectious causes. They will get to the bottom of it.

Jan

Thinking of you and your son   I hope everything goes well     Grace

Jan, thank you.  Jeffrey is now in the hospital.  His bilirubin is 4.  Normal is 1.  They did a CT scan this afternoon and found that he has gall stones.  How is it that a kid,of 24 gets gall stones!  That was always something people in their 40's and 50's got.  But I know several 24 year olds who have had their gall bladders removed.  I'm not home yet so my husband is dealing with this, never a good thing!  But as of this evening was waiting for gastro to come up and decide next steps.  I think it depends on how much inflammation there is and whether to remove the stone or just take the entire gall bladder.  I just hope they do it laparoscopicly and not open him up.  I'll be home by noon tomorrow so I'll just go straight to the hospital.  Poor kid, just can't catch a break!

Thank you, Grace.  Hope all is well with you.

dianne

Gallstones are pretty common in folks withour profile, regardless of age. We tend toward dehydration, which leads to gallstones, and kidney stones too. The key is keeping hydrated and the urine dilute. But even if you do everything right, gallstones and liver diasease are acommon associated complication of UC.

Jan

Jan thank you for your input.  I didn't realize this was a common occurance.  What makes it so darn complicated is he is always claiming of pain we I think it is post surgical, so no one looks for anything.  Plus he didn't show any real symptoms until Tues.  good thing I was planning on leaving Florida on Wed. When I did.  I should be home before they do anything to him.  I only have about 4 more hours of driving to do without traffic.  I just could not do it all today, 8 hours is about my limit!  Between the rain and traffic today what should have been 6 hours turned into 9.  D.C. Traffic is worse than NYC traffic, I swear!

If he was on TPN that can significantly increase the risk of gallstones.

Scott, he was on TPN!  For about 8 weeks.  Boy, if there is a complication out there, it seems Jeffrey is going to get it.  And just when I thought things were going well.  Thank you for your input!

dianne

I am so sorry Dianne,

Yes, this is so common...I had galbladder problems from the age of 13 or 14 but only had it removed 3yrs ago...they stone kept growing all that time but with all of the other medical complications no one ever wanted to touch it.

The good news was that they did it through lap surgery and I was only kept 3 nights (precautionary measure due to my pouch situation and he likes to keep an eye on me for 72hrs).

Lap surgery is so easy compared to open surgery...

Hang in there, drive carefully and keep drinking and eating along the way

Sharon

I think it's good that it was a gall stone, compared to what else it could have been.  I am having my gall bladder out end of July.  As indicated, I think that many of us have a tendancy to develop GB issues -- not only with a pouch, but it seems to me that there might have been evidence that digestive disorders, like Colitis and Chrones are sometimes associated with gall bladder issues?  I was diagnosed a few years ago with PSC, primary schlerosing cholangitis (sp?) (inflammation/hardening of the GB ducts, I think?) and wonder how long I had this issue and whether it was a partner to colitis.

My gallbladder went bad and was removed (at age 30) long before UC dx and my j pouch surgery. Two of my twenty something year old nieces have just had to have there gall bladders out and they do not have IBD. Seems to be a problem of all ages now as I'm hearing more and more young people having gall bladder problems. But yes, having IBD bumps the chances up a lot. Hope they can do it laparoscopic for him. Mine was done lapo and my recovery was very smooth. Best wishes. 

Well folks, the shit has hit the fan, big time!  it looks like he has PSC.  Jeff's surgeon said liver transplant, but the GI who is doing the endoscope said it looks like very early state PSC.  So my question, while I'm waiting for answers, to knklhead, what are they doing for you?  I'm getting a lot of different information from everyone here.  I'm realling.  I just came up from Florida and have not even been home yet.  I just keep thinking that this poor kid is going to die.  Not know, but sometime in the near future. I'm can't get it out of my head.  I just said to Jeff's gastro doctor, we came in here for me simple procedure, meaning the colonectomy, and look where we are today.  It's been one disaster after another.  And it keeps going from bad to worse.  Half the radiology department and the  anesthesia   department know us.  I'm going to have to invite them all to dinner if this keeps up.  Well, I guess I should just wait until this procedure is over.  Should be about an hour or so.  

Dianne

Oh, knklhead, PSC is only diagnosed in patients with UC.  Never seen otherwise.  Have they discussed transplant with you? 

Dianne

Oh geez so sorry to read that news. I will keep Jeff in my prayers. Hopefully it's early and they can just treat it with medication.

Well, they said I had PSC, but never seemed too excited about it!  (Therefore, I haven't been too excited, either.)   My gastroenterologist did some form of cutting to help with PSC?  Again, even though I had a GB attack and an enteroscopic procedure of some sort two weeks ago, no one even mentioned PSC, and they were taking an up-close gander.  The surgeon who will do my GB removal at Cleveland Clinic also has all the info.  Perhaps there's different stages of PSC - liver transplant might indicate a more progressed PSC?   I hope nothing but good news for you here on out!

I am so sorry for the 2 of you (plus hubby)...this is so unfair. 

How is he taking it? Have you told him? How does he feel?

I just looked it up on the internet and it gives different views on both short term and long term prognosis.

It is not all gloom and doop but like Knklhead said it may depend on the advancement or severity of the disease.

Go home, take a shower and a nap before you take another step.

You need the rest too. He is in good hands for tonight.

Sharon

I'm so sorry for Jeff's issues but maybe I can help you with the PSC diagnosis.  First you may have Chrons or UC but it's more prevalent in UC patients.  Unless his liver is grossly damaged and bile ducts are blocked a transplant may not be imminent.  He may be listed now but he can go for years before it's a priority.  They tell you it's an average of 10 years from diagnosis to transplant.  But it's a very strange disease and doesn't follow the rules.  Check out PSC Partners Seeking a Cure website.  A Very informative and legitimate site.

Good luck and PM me if you have any questions I might help you with.

To add to the other clarifications, PSC does not only occur in the presence of UC. However, most cases (75%) are associated with IBD, mostly UC. But it is rare. I know, not much comfort when you or yours is affected. You can go many decades before liver transplant is necessary, if ever, as it is a very slowly progressing disease. While definitely not a welcome diagnosis, it is not a death sentence. 

Hopefully, you'll get the full story once you can speak to the doctors And find out if this is confirmed or only suspected. It was suspected in me at one point, but the MRCP did not confirm it. I chose not to go further with an ERCP or liver biopsy, and my liver enzymes have stayed down since that time.

http://www.liverfoundation.org...uttheliver/info/psc/

Jan

Jan, thank you.  It is confirmed.  They did an endoscopy today, found that the gall blader bile ducts were filled with sludge junk.  The liver ducts were funky looking.  They said it was very very early in the disease.  If Jeffrey didn't have the jaundice, not one would have found it.  His liver numbers are not great, but slightly better than the other day.  He has had fatty liver disease but since he lost 120 lbs, I thought that it would have resolved itself.  We were told to get a second and third opinion, no rush.  But get our ducks in a row and be ready to roll if necessary.  They are removing the gall bladder early next week.  So hopefully that will help get the jaundice under conteol.  I'm exhausted after driving 1300 miles in three days.  Then to be hit with this, there went all the relaxing I did n Florida!  I guess this too shall pass!

thank you for the update.  Much better news!  Look forward to updates.  Remember to pull over, take naps if you are tired when driving.  

Well, this may not pass, but you will get past it! Good to hear it is in early stages.

One thing I have learned by dealing with one autoimmune disease after another since 1972 is that it is never over. So I avoid disappointment by not expecting it to be over. Lulls and remission are good enough for me.

Jan

thank you everyone for your kind words and advice on this latest development.  Jeff's numbers are slowly getting better.  Yesterday they cleaned out some of the sludge in the bile ducts and that has helped.  If he can get on solid foods today, he can come home today.  They will take his gall bladder out early next week so if his numbers are improving there is no point in keeping him here.  The transplant issue is on hold right now.  They caught the PSC so early that the best advice is to keep an eye on it for now.  I wish the doctors would stop scaring the crap out of me!  

Sounds like good news! 

I agree. Too many doctors lead with the worst case scenario. So, by the time they are talking about the most likely scenario, you are so focused on doom and gloom, you never hear the good news. Patients and their families are under a great deal of stress, which makes their ability to understand and retain information very impaired. I don't know what they teach in med school, but that is basic nursing 101  

Jan

Jan , agree.  Too many darn doctors are involved in Jeffrey's care right now.  They sent him home yesterday which was great.  No point in keeping him in the hospital.  The transplant team came up before he was discharged and they have now said leave the gall bladder!  Tuesday, I'm going to get ahold of these people, bang their heads, and lock them in a room with no food or water and tell them they can't come out until they make a decision!  Three surgeons, 2 GI doctors, transplant people and I don't remember who all the other people were.  Too many.  Everyone had a different opinion.  And diagnosis!  Way too much stress for all of us.  I went to the beach today to see my younger brother and his new baby that is 7 months old and I've only seen once!  What a cutie pie!  The rest of the kids are adorable too!  It was good to get the heck away from here for a few hours!

Well, no good news but we have an appointment in NY with a hematologist.  As it turns out a family friend is a transplant surgeon at Leahy Clinic in MA.  So he was able to get plugged in immediately with this doctor at Weil-Cornell.  I've been reading a lot about PSC Primary Sclerosing Colongitis.  This disease is some serious stuff.  Now I have two serious issues to contend with. I'm feel so bad for Jeff. Me erythema I look at him, I start to cry, every doctor I speak to I start to cry.  I had my ENT in tears last week.  I wrecked his entire day.  As well as the rest of the staff.  And as luck would have it, Dr. dietz's office finally called me back with a date for Jeffrey to go out there.  I took the date in September just to have it, but I'm wondering if I should have any of the Colon Rectal surgeons at Cornell or Columbia look at him.  I like to have all records in the same place.  Anyone have any names of doctors with the medical school?  And since where Jeff is currently being treated has referred us to go elsewhere, I'm wondering if that's the better idea since we have 2 serious issues and having him followed at Cleveland is not practice because if he gets a flare up, I can't get him to cleveland.  And there is a ton of followup that goes on.    Right now my head is realling and don't know if I'm coming or going.  

Any my insight is appreciated as always.

d

 Hi, jeffsmom. Jeff from livingwthpsc here. When I read your first post, I thought cholangitis attack. I have not had issues with my gall bladder, so there may be similarities.

The good thing about PSC is that it progresses very slowly, but #$%%$ can happen at any time; it can be unpredictable.

One thing having had both UC and PSC have taught me is to be flexible, focus long term while dealing with the day to day stuff as needed, but focusing on the long term is a sanity-saver. And knowledge is power.

Jeff

Hi Dianne,

How is Jeff taking all of this? Being pushed and prodded and shoved from doctor to doctor and specialist to nurse...how is he taking it?

I know how hard the physical and emotional aspect must be but how is he holding up (I know that you are doing everything possible to preserve him and keep him safe)...by the way, are you sleeping? Eating? get a stress-free minute?

Don't forget that this is a long-haul disease and you need your health and strength for a very long time so keep healthy, tell them what you think, evacuate your stress and breath!

Hugs

Sharon