Help pain is unbearable

[lilbethm]

Help,
I ama 37yr old female who had complications from a hysterectomy 3yrs ago. A very bad infection caused the insicion to herniate, it was a mess. I was left with debilitaitng pain.
During all of my test they did notice my liver looking (fatty)
I was 15lbs overweight at the time. Every test the liver looked worse. But I recovered and started a business of my own, it is very successful, I was pain free and loving life.
This past summer I noticed a swelling under my rib, it didnt hurt so I let it go untill Sept last year it started a burning pain. Every day the pain got worse until I couldnt stand it anymore and went to the Dr.
He had an ultrasound, and a CT scan that showed a leision, on my liver and again the NASH.
He then ordered a Biopsy of my liver and sent me to a surgeon who turned me awy because I wasnt loosing any wieght, Now 4 months later I am on 2mg of Dilaudid for pain, it isnt touching the pain. I cannot sleep in my bed because my kidneys hurt its to hard. And I fall asleep standing up. I am awake but will just drift off and come back.
I am a generally happy person, my husband is getting tired of it all, I can't drive to the corner it hurts so badly.
I did pass bright red blood last January and had an endoscopy done they thought IBS but not now, there is no more sign of intestinal problems.
I feel like I will surely die without help, but because of my healing problems no-one wants to touch me.
Do you know what they should look for? What stages of liver disease are my symptoms. And know any great Drs in the philly area you can talk to for me?

[Kevin Pho, MD]

Hello - thanks for asking your question.  

I'll briefly talk about treatments for NASH.

Nonalcoholic steatohepatitis (NASH) is the term used to describe the distinct clinical entity in which patients lack a history of significant alcohol consumption but have liver biopsy findings indistinguishable from alcoholic hepatitis. Other terms that have infrequently been used to describe this condition include pseudoalcoholic hepatitis, alcohol-like hepatitis, fatty liver hepatitis, steatonecrosis, and diabetic hepatitis.

There is no proven effective therapy for NASH. Attempts are made to modify potential risk factors such as obesity, hyperlipidemia, and poor diabetic control. Weight reduction should be gradual, since rapid weight loss has been associated with worsening of liver disease. One report suggested that weight loss should not exceed approximately 1600 g (approximately 3.5 lbs) per week in adults.

Ursodeoxycholic acid, Vitamin E, Metformin, Pioglitazone plus vitamin E, and Betaine have been studied in the treatment of NASH in various preliminary trials.  You may want to discuss these options with your personal gastroenterologist.

I stress that this answer is not intended as and does not substitute for medical advice - please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Links:
American Liver Foundation - NASH
http://www.liverfoundation.org/cgi-bin/dbs/articles.cgi?db=articles&uid=default&ID=1027&view_records=1

[kimbacat]

I'm sure the Doc will be around shortly to help out.  

have you been back to the GI that did your endoscopy?  I would start there and not with a surgeon (not sure why you were sent to one).  whoever is prescribing the dilaudid maybe can push for an appt right away.  the local gi can start working you up and if things get complicated, you can have him/her refer you downtown (Penn, Jefferson, Graduate, Temple) or even down to Hopkins if that's closer.  there are some really good gi's and hepatologists in the area (local and downtown).  

best of luck

[lilbethm]

They sent me to a surgeon to have a biopsy of the leision on my liver.
Thanks I really would like a specific Dr. Name last time I went to U of Penn to a specialist he told me I was depressed and 2 weeks later I passed blood that seemed like gallons for 4 hrs, then I knew it wasnt my mind.
They judt really are scared of me because it seems an infectious disease process is going on, but no-one knows what for certain.
I have fevers, pain in my side that is excruciating now!
And even wose than that is this tiredness. It is awfull I can tshake it even on a beuitiful day like today!
I am missing so much. I am getting depressed, but its not the cause of my problem it is a side effect.
As I stated I have everything in the world a successfull business, happy home. I love my kids and my husband. We have so much fun together. I wish I could go out today I am afraid to drive.

Beth

[lilbethm]

By the way I don't blame the Dr.'s for being afraid of me!!
But still I need help here.

Beth

[roxnsox]

I am so sorry to hear that the doctors are giving you the run around.  I have been through it with the doctors---it is awful.   Did the doctor give you any advise on what to do about your liver problem (NASH)?  
   I was diagnosed with NASH a year ago and this is what I recommend.  Drink lots of water.  I have found that just drinking a lot of water will get rid of some of the pain. Cut back on as much of the trans-fat as you can.  This includes all hydrogenated oils and partially hydrogenated oils.  Read package labels.  I lost 20 pounds by cutting hydrogenated oils from my diet and I feel so much better.  
   Look at the American Liver Foundation's website.  It is liverfoundation.org.  They have some information about NASH.  There is research going on at the present time and more and more inforamtion is being published about NASH.  Not all doctors are up to speed about this yet.

[kimbacat]

I also know what it is like to get the run around (2 decades of being told my Crohn's disease was all in my head).  it's hard to be persistant when you feel so crappy, but you need to be.  talk to your primary care doc or gyno about your situation and your experiences so far.  at least have them do blood tests and check for things like anemia, etc which might be contributing to your fatigue.  perhaps they can refer you to someone else.  be firm and push them for help.  in the meantime, you can call the offices of the gi and surgeon that you saw and ask for copies of your records.  there might be a small charge and you might have to fax a short note to them to "officially" request the information.  call the hospitals and ask for copies of your records and the films for the CT and U/S that you had.  this way, you'll have records in hand when you go to a new doc.

the reason I asked about the surgeon is that as far as I know, liver biopsies are done by either radiologists or gi's.  I think they would be better able to assess your risks for a biopsy.  

I in no way want you to feel that I am saying this is all in your head, but seeing a counselor might help you.  pain and illness put a tremendous stress on your body.  talking to someone can help you deal with the stress while you are trying to get an answer from the docs.  it won't make things go away, but it might help you cope.  maybe they can get you into a pain management program.  my counselors have taught me a lot of things to help with the stress and chronic pain that I have.

I've found that support groups are good places to hear the good and bad about different docs.  at a minimum, you'll hear who NOT to go to.  check around and see if there are any NASH, hepatitis, crohn's and colitis, etc support group meetings near you.  check out the university hospitals, AMA and GI society websites for info on docs, what their specialities are, etc.

the reason I'm hedging on naming anyone is that my GI, hepatologist and pulmonologist are all at Penn and you've said that you had a bad experience there.  my local gi is with Hillmont GI in Montgomery County (drs Nack and Miller and a bunch of others) and have always treated me very well.

best of luck

[tessa0825]

I think (in my experience) your advocate has to come by way of you Family dr...It all starts with him (or her) If you have one that isnt active in your medical care and willing to get involved and make things happen, then I would be looking around for one that is..They are the ones that can get you into specalists and continue to push for answers.....About two yrs ago my family Dr. noticed I had been running a high wh cell count...and he made up his mind he was fidning out why...I complained of NO symptoms, other than tiredness....He ordered ct scans and other tests and when he wasnt comfortable with those results he TOLD me I was going to a cancer Dr. and a GI Spec...when his office staff called the GI Dr., we were told  that my appt was for in 5 MONTHS, he blew a gasket, he called the GI Dr. himself and my appt. was now in 5 days...Result, after biopsies and EGD was Barretts (precancerous) Esophagus with low-grade dysplasia....I would have probably never went to a Dr. on my own for those acid-reflux symptoms (we are programed to think acid-reflux is normal).If not for having a savvy family Dr., who knows when I would have been diagnosed and started receiving treatment....He is the one that puts it all together for me...I still see the cancer Dr. and I will have a long (lifetime) one with the GI Spec.,but, I think your family Dr. is the one that needs to initally be in charge....Good luck to you!! Dont give up !!!  Tessa