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?

[mountaindog]

First, your story is inspirational.  You have endured tremendous suffering.  I am so sorry.

Wow.  It saddens me that so many doctors have lost their drive to problem solve.  I, too, have been given the "nothing seems to be Wrong with you" brush off.  After many tears, a few suicide attempts, and losing my ability to work, I finally took my health care into my own hands.  At my lowest point, I made just enough to not qualify for assistance, but not enough for insurance.  Don't give up.

I have a Doctor friend in another state who coached me. I started interviewing Doctors.  Its called a "meet and greet".  If they won't do that, than you don't want them anyway. Ask questions like..."What approach do you take to difficult to diagnose cases?"  Figure out what their philosophy of healthcare is.  Think of all the resources a Dr. has.  The Way they think is as important as their ability to memorize symptoms and  drug formulas.  Briefly explain some of you symptoms.  As what approach they would take, an action plan.  Ask what they would do when plan A doesn't work.  What's plan B, C, and D?  Name some obscure gasto. diseases and ask what their experience is in treating them.  Don't be afraid to remind a doctor that You know your body best.  

If you have insurance, bug them, Only talk to managers, if they won't pay for your 2nd, 3rd, etc. consultations.  No, they don't really care about you, but the squeeky wheel gets the oil.

It is so much easier for me to give advice, than take it.  I still suffer depression from constant pain and exhaustion, but a story like yours offers a great reminder that we are responsible for our own health.  Sometimes that means being overly assertive.  If you are paying for a service, it is Your Right to demand quality.  It is so demeaning to see a person in pain and tell them they are fine or to just treat the pain and not stamp out the underlying cause.  I have let several Dr.s make me feel 2 inches tall.  I felt like a big ball of isolated sorrow. You Deserve to be Listened To!


Stepping down from my soapbox...which tests have you had done for celiac?

[cmac120]

Just a thought on the sleepiness caused by the anti-spasmodic meds.  You might want to try Dicyclomine.  I was on that and Asacol a few years ago and it helped immensely.  Asacol iss an anti-inflammatory and works in tandem with the anti-spasmodic.  I didn't experience any side effects from the Dicyclomine so that might be something to look into.  My GI specialist couIdn't pinpoint the source of my problem either as I was experiencing symptoms of IBD, IBS and Crohn's.  The meds stopped the pain and bloating but not the chronic diarrhea.  I stopped going to him eventually because he was offering me no solutions.  I did some research on my own and now I take fiber twice daily and a probiotic/digestive enzyme combination before every meal.  What I found in my research is that your colon will not always digest carbs and once they are broken down into simple sugars, they stagnate in the colon and build up gas and antibiotic organisms causing diarrhea.  So I cut out carbs altogether.  I eat nothing with sugar in it or high fructose corn syrup, nothing processed (including mayo and processed meats) and just make sure that if I cheat on the diet that there isn't a lot of sugar in it.  I am also lactose intolerant so this severly limits what I can eat.  I cheat about 3 meals a week and the probiotics seem to pick up the slack in those cases.  My abdominal pain is gone and I still get diarrhea from time to time but it's not nearly as bad as it was before.  A little Immodium usually clears it right up.

[mematrix]

You do sound like you understand the frustration we havve experienced with this ordeal!  Why is it that when Dr.s don't know the answer they blame the victim?  I guess they are hoping she will give up as well and just disapear, leaving their MDiety complex in tact.  They are giving her antispasm meds for IBS now and it does help a little but she is so sleepy.  We're wondering if it would be of any advantage to look for another Dr. now but this one at least knows her history.  They are all so afraid of malpractice suits that they are unwilling to do the tests necessary to get a definitive answer.  Guess you can tell I am angry.  They are not helping my daughter and she is going further in debt everyday with Dr. bills and not being able to work.  Thanks so much for your input and ear to my frustration.

[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]

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?

[mematrix]

Thank you for your comments.  It seems like so many people have this problem following a gall bladder removal yet the Dr.s don't seem to have a clue about the cause.  memanatrixkid was supposed to have (yet another) endoscopy yesterday but after 3 hours of waiting they couldn't get their equipment to work so she went home.  The associate Dr. (primary gastro was out of the country...again) read from the chart aloud and he said, "Maybe this is the best she will be.")  Constant pain, still losing weight (lost 70 pounds so far), constant nausea and diarhea and very low blood sugars, 60 sometimes.  This is the best she will be?  I can't accept that and neither can she!  She  is a young woman with children and a husband who have been on hold for nearly 2 years because the Dr.s don't seem to know or care what is wrong.  Sorry for the rant...I'm at my wit's end.  Hope you feel better.