Sharon, since your autoimmune disease is not the typical IBD we see here, I doubt you will find much in the way of others with similar problems. While fatty liver disease and PSC is associated with UC, that is not your case. I also presume they have ruled out infectious hepatitis and autoimmune hepatitis, liver cancer, etc. your long surgical history probably is not a factor unless you now are having constrictions in the large veins or arteries in the portal circulation. Heart failure could also even be a player. Still, I would think they looked at all that.

It seems that you always seem to wind up with those rare maladies that have your docs scratching their heads. I wish I had more to offer you, other than to research hepatomegaly to see if any of the causes fit your crazy history.

I have had to deal with elevated liver enzymes, but my Dx was a straightforward nonalcoholic fatty liver disease. Hope you get this sorted out.

Jan

Hi, Sharon. I’m sorry you’re going through this. The “good” news is that the pain might be completely explained by the liver enlargement. Have you made sure that the doctors scratching their heads over this are aware of your Ehlers-Danlos?

My dad has minor liver issues and we follow up with gastro to monitor everything. Are you following up with Gastro?

Thanks, Jan, Scott, Lauren,

So far they have ruled out fatty liver disease, Hepatitis (any letter of the alphabet), cancer or at least tumors, etc...nothing is apparent on the MRI, the ducts are clear and there is nothing obvious enough for them to say, 'eurica!' other than, 'geez, that's a big liver'.

I don't drink and have (in spite of my sugar addiction) no major bad habits...so they are, as you say, scratching their heads...this has been going on since the gallbladder removal but worsening over the years...I've had numerous ultrasounds that showed nothing (at one point I thought that there must be a tiny stone or gravel stuck in the duct causing all of this)...my GP knows about the EDS but has no idea...

I have to redo the bloodwork and then go see a gastro. I haven't seen one in over 30yrs.

I was just hoping with all of the experience on this site that someone was going to pop up and say, yup, I've got the same problem...we did this and fixed it...yes, I know, I'm an optimist.

Have a happy holiday everyone, or as happy and healthy as possible.

Stay safe

Sharon

Sharon, perhaps you could get a referral to a hepatologist instead of a general gastroenterologist. One of the advantages of life in a major city is access to every flavor of sub-sub-specialist. At worst you’d get more sophisticated head scratching.

That was the next step...my GP says that there are 'steps' that you cannot jump over...first the GI then if needed the hepatologist.

Merry Christmas...

Sharon

@skn69 posted:

Thanks, Jan, Scott, Lauren,

So far they have ruled out fatty liver disease, Hepatitis (any letter of the alphabet), cancer or at least tumors, etc...nothing is apparent on the MRI, the ducts are clear and there is nothing obvious enough for them to say, 'eurica!' other than, 'geez, that's a big liver'.

I don't drink and have (in spite of my sugar addiction) no major bad habits...so they are, as you say, scratching their heads...this has been going on since the gallbladder removal but worsening over the years...I've had numerous ultrasounds that showed nothing (at one point I thought that there must be a tiny stone or gravel stuck in the duct causing all of this)...my GP knows about the EDS but has no idea...

I have to redo the bloodwork and then go see a gastro. I haven't seen one in over 30yrs.

I was just hoping with all of the experience on this site that someone was going to pop up and say, yup, I've got the same problem...we did this and fixed it...yes, I know, I'm an optimist.

Have a happy holiday everyone, or as happy and healthy as possible.

Stay safe

Sharon

You are welcome

You had not seen a GASTRO in 30 years????!!?!!!!

No, No need to...I saw my surgeon if I needed something but if not I never had to see one...

@skn69 posted:

No, No need to...I saw my surgeon if I needed something but if not I never had to see one...

I do not recommend that dear. I confirmed with at least 5 doctors that we need to get our pouchoscopy every 1-3 years no matter what; you cannot always feel a problem.  

I've had my K pouch for 42 yrs...The only time that I get scoped is when I need it and that is something that my surgeon orders.

@skn69 posted:

I've had my K pouch for 42 yrs...The only time that I get scoped is when I need it and that is something that my surgeon orders.

I think you should maybe get a second opinion. At least 5 doctors that I have come across have said every 1-3 years. Be careful and good luck with everything!

@Jan Dollar posted:

Sharon, since your autoimmune disease is not the typical IBD we see here, I doubt you will find much in the way of others with similar problems. While fatty liver disease and PSC is associated with UC, that is not your case. I also presume they have ruled out infectious hepatitis and autoimmune hepatitis, liver cancer, etc. your long surgical history probably is not a factor unless you now are having constrictions in the large veins or arteries in the portal circulation. Heart failure could also even be a player. Still, I would think they looked at all that.

It seems that you always seem to wind up with those rare maladies that have your docs scratching their heads. I wish I had more to offer you, other than to research hepatomegaly to see if any of the causes fit your crazy history.

I have had to deal with elevated liver enzymes, but my Dx was a straightforward nonalcoholic fatty liver disease. Hope you get this sorted out.

Jan

How can PSC be ruled out if her liver enzymes are elevated?

Elevated liver enzymes are a sign of a variety of liver diseases and are a non-specific indication of liver inflammation. PSC is rare and most of those cases also have an IBD diagnosis (which if I recall correctly, Sharon never had, but she has another disease, Ehlers-Danlos Syndrome, a collagen disorder). Anyway, PSC can be ruled out with MRCP imaging, as it was in my case. Liver biopsy is the most definitive, but is not without risk.

In regard to regular scopes in Sharon’s case, since she does not have a j-pouch, any retained rectal tissue, nor an IBD diagnosis, she does not fall into the general guidelines for regular scopes that most of us here are subject to.

Jan

Just to clarify, my liver enzymes have been elevated for over a year, the pain has been going on progressively for more years...my generalist (very kind but new in my life, being that we moved recently) did not find the numbers alarming...I had to insist on the abdominal plate due to the sudden and severe pain...there they found what they thought was an enlarged shadow of an impacted colon!  My surgeon then ordered the MRI that confirmed that it was my liver...but with covid we are not rushing to see any doctors unless it is absolutely necessary.

I did have an undetermined, as a teen, IBS diagnosis...hospitalized over a dozen times... they called it spastic colon with repeat unresolved 'gastro' symptoms...with the usual bleeding, uncontrollable diarrhea etc...I.V. and antibiotics were the go-to treatment...but I did not have a diagnosis of U.C. or Crohns (it would have been a deal-breaker for the K pouch at the time).

None of the patients from that time (the 70's-80's) that had k pouches done were ever suggested to have annual scopes...it was thought that once the colon was gone, the disease left with it...unless there was cancer.

New information and the fact that they now do J pouches and K pouches/BCIR for people with both U.C. and Crohns as well as cancer and other diseases (yes, other reasons can lead to pouches such as anal atresia, accident, incontinence...) have led us to the fact that the disease can come back in the small bowel...not my case.

I am doing a simple liver cleanse right now (all-natural with artichokes cooking water, lots of vegetables and very little of much else just to lighten the load on my liver). It will not cure anything but at least I am not making things worse...it seems to help with some of the pain and bloating...

I have had a lot of medical issues and treatments and take NSAIDs daily which can cause liver toxicity...the pain is unbearable without them and I refuse narcotics (the French having no problem prescribing them by the truckload without any restrictions)...the accumulation of all of that may be at the bottom of this.

Yes, I will need to proceed with my exams or tests and see a gastro or hepatologist but until this covid thing is over, I will deal with the pain and discomfort, avoid anything that can make matters worse and keep my fingers crossed.

I wish you all a very happy, healthy, safe and joyous New Year...

Sharon

@skn69 posted:

Just to clarify, my liver enzymes have been elevated for over a year, the pain has been going on progressively for more years...my generalist (very kind but new in my life, being that we moved recently) did not find the numbers alarming...I had to insist on the abdominal plate due to the sudden and severe pain...there they found what they thought was an enlarged shadow of an impacted colon!  My surgeon then ordered the MRI that confirmed that it was my liver...but with covid we are not rushing to see any doctors unless it is absolutely necessary.

I did have an undetermined, as a teen, IBS diagnosis...hospitalized over a dozen times... they called it spastic colon with repeat unresolved 'gastro' symptoms...with the usual bleeding, uncontrollable diarrhea etc...I.V. and antibiotics were the go-to treatment...but I did not have a diagnosis of U.C. or Crohns (it would have been a deal-breaker for the K pouch at the time).

None of the patients from that time (the 70's-80's) that had k pouches done were ever suggested to have annual scopes...it was thought that once the colon was gone, the disease left with it...unless there was cancer.

New information and the fact that they now do J pouches and K pouches/BCIR for people with both U.C. and Crohns as well as cancer and other diseases (yes, other reasons can lead to pouches such as anal atresia, accident, incontinence...) have led us to the fact that the disease can come back in the small bowel...not my case.

I am doing a simple liver cleanse right now (all-natural with artichokes cooking water, lots of vegetables and very little of much else just to lighten the load on my liver). It will not cure anything but at least I am not making things worse...it seems to help with some of the pain and bloating...

I have had a lot of medical issues and treatments and take NSAIDs daily which can cause liver toxicity...the pain is unbearable without them and I refuse narcotics (the French having no problem prescribing them by the truckload without any restrictions)...the accumulation of all of that may be at the bottom of this.

Yes, I will need to proceed with my exams or tests and see a gastro or hepatologist but until this covid thing is over, I will deal with the pain and discomfort, avoid anything that can make matters worse and keep my fingers crossed.

I wish you all a very happy, healthy, safe and joyous New Year...

Sharon

THanks!!! Same to you! Happy New Year Dear!

Sharon,

My liver enzymes have been elevated for a while and they are calling it fatty liver.

Thanks CT,

They have ruled out fatty liver disease...I was pretty sure that it had to be that but my surgeon reviewed the results and concluded that it isn't that...

The search continues...

Happy 2021...may it be better than 2020 was!

Sharon