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?

[MeMaskid]

Thank you for your kind words.

[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).  :)

[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!

[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?

[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)

[mematrix]

Don't give up sweetie.  I'm not.