gastroenterology mystery illness

[mematrix]

My 40 year old daughter has been very ill for about 2 years now with something that none of the many Dr.s she has seen have been able to identify.  She has upper right sidded abdominal pain, severe enough to require 30mg oxicodone to take the edge off and make it tolerable.  She also has constant nausea and vomiting and has lost 70 pounds in the past year due to the fact that everytime she eats (doesn't seem to make much difference what she eats) she has pain, nausea and diarrhea.  She had her gall bladder removed about 3 years ago and it was somewhat better for about 6 months but has gotten consistantly worse since that time.  She had a surgery about 6 months ago in which the surgeon tightened the upper stomach opening and opened the bottom.  Since then she has had constant diarrhea, nausea and pain.  The surgeon has given up and said, "Maybe this is just who you are."  She has been unable to work and is exhausted with the slightest efforts.  She is now being treated for depression since she is nearly housebound and having financial worries since she can't return to her job.  Her disability insurance is about to run out and she is very ill.  Please, can anyone help?

[Kevin Pho, MD]

Clearly,  there has been a comprehensive evaluation with the upper and lower endoscopy.

Sphincter of Oddi dysfunction can be considered, and is more prevalent in those without gallbladders.   A Sphincter of Oddi manometry would be the test to consider if this is suspected.

I would obtain blood tests to exclude celiac disease, and send the stool off for analysis to exclude malabsorption.

Otherwise irritable bowel syndrome can be considered.  Antispasmodic agents and tricyclic antidepressants are medications that can be discussed with a GI specialist.

This answer is not intended as and does not substitute for medical advice - the information presented is for patients education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
www.kevinmd.com

[marie313]

I have similiar symptoms and have also had to deal with horrible pain and nausea. They have me on Dilaudid which also helps me with my pain, but a lot of nausea meds don't seem to work. When I was hospitalized last month for my stomach issues they put me on a different medication that I hadn't yet tried. It's called Promethazine and it has helped incredibly with my nausea. Has she been tested for Gastroparesis and/or IBS or taken any prokinetic drugs to help with her symptoms?

[MeMaskid]

Hello,  I am mematrix daughter.  I have now too joined too look for some kind of hope.  I have been tested for Gastroparesis and I do have a mild case.  I have been told I have IBS for many, many years now.  As for the Promethazine, it was the first anti-nausia med I was put on and it makes me so sleepy that I could not function and it was contributing to the depression.  I now take Marinol.  It is wonderful!  Works like a magic pill but it is not cheap.  It also makes me very forgetful.  I can not think of words and spelling is an option.  I find myself having to check so many words to see if they are spelled correctly.  I was the type of person that could remember everything and multi task like crazy at work.  Now I can't even work.
My doctors are starting to give up on me and I still don't know what is wrong and it seems as though I will have to live like this the rest of my life.  I am only 40 and I do not want to.  I have a 10 year old boy and a 14 year old girl.  Both of which have their own medical issues.
I am thankful for any hope I can get.

[mematrix]

Don't give up sweetie.  I'm not.  

[lizziecee]

Hi - welcome to the forum, which is a great place to ask for advice, even if sometimes all we can offer is emotional support.

Just a thought - have you been tested for Crohn's and/or pancreatitis? Both of these diseases can present with the symptoms you are experiencing. Are you seeing a gastroenterologist, rather than a surgeon?  An upper endoscopy of the GI tract, and a colonoscopy of the large intestine can rule out many disorders, or indeed, lead to a definitive diagnosis and then appropriate treatment.

You are probably suffering from malabsorption with the severe weight loss,which can lead to some of the cognitive problems you have. Once you get the disease under control (whatever it may be), and some nourishment, I am sure these problems will improve.  

Don't give up - be proactive with your doctors - it is not just the "way you are" - you have a serious medical problem which should be properly investigated and treated.

Take care,
Liz (a Crohnie of 38 yrs)

[MeMaskid]

Thank you for the welcome.  

Yes I have been tested for Crohn's and it was negative.  I have not been tested for pancreatitis.  I am seeing a Gastro/surgon.  All he keeps saying is that I have to wait for at least 6 months from the surgery date(March 17, 2008) to see if it has worked.  I can tell you that I feel as though things have become worse since the surgery.  Yes I have had 3 upper endoscopies & a colonoscopy.  Some problems were found with the endoscopy.  The surgery was supposed to fix these issues.  I have been looking into the possibility of having something called Sphincter of Oddi dysfunction.  I do have a lot of the symtoms.  I mentioned it to me GP and he did not think that is what the problem is.  He fills it is adhisions that have re-formed.  But that doesn't explain the nausia.

I will keep trying.  Thank you for the support from afar.  I have a wonderful support team that are in my corner here.  But you can never have enough, right?

[marie313]

Hello there. I can understand your issue with the Promethazine. Although my nausea is healed, I usually fall dead asleep right after I take it. The problems that you are facing with the Marinol is because Marinol has always been side to have the same side effects as marijuana. That explains the side effects of short-term memory and not feeling completely there.  I'm actually quite surprised that you have chronic diarrhea because usually when people are taking narcotic pain medications like you and your father stated you were, they usually experience constipation and sometimes are even prescribed laxatives along with the narcotic so the maintain bowel movements. I feel your pain of not wanting to live the rest of your life like this. I'm 20 years old...exactly half your age and I can't imagine living through this for much longer. I'm so saddened because you have kids that you need to take care of but you're so sick you can't always be there for them. I really wish you the best of luck!

[marie313]

I just noticed on your profile that it said you were female. For some reason I thought you were Memaskid Dad, so sorry for that confusion and saying father in the last post to your daughter. Haha, these things are really misleading with only having screennames to make reference to. So I'll make this easier - my name is Marie (although that wasn't too had to tell from my display name).  :)

[MeMaskid]

Thank you for your kind words.