Chronic GI Problems

[Adel Dotzler]

About a year ago my daughter was treated for a very nasty, resistant ear infection.  After about a month of trying to treat her at home it became necessary to hospitalize her and put her on IV antibiotics and IV non-steroidal pain meds.  A few days into the therapy she began vomitting, and a few days later she was vomitting blood clots.  Oops they overmedicated her and ulcerated her stomach.  She was treated with zantac and sent on her way.  While trying to continue to treat her for the residual ear pain a doctor put her on celebrex, and you  guessed it reactivated the ulcers.  Since that time we have been on a rollercoaster ride of treatment.  She had a whole regimen of blood work done.  Her WBC always was slightly elevated as was her sedrate.  She had elevated ANCA which had everyone thinking auto immune syndrome (she had a severe reaction to sun exposure the summer before).  They repeated the ANCA a while later with some other tests and it was normal (I thought at one point her ANA was also elevated and then normalized)..  They started wondering about IBS.  She had a white blood cell scan in Nuc Med.  It had a hot spot in the area of the liver/duodenum together with the elevated ANCA and they treated her with steroids.  Inconclusive.  They did a gastric emptying scan which was low borderline normal at best.  The suggestion was made to repeat it with a 2 phase test (liquid and solid), a professional arguement ensued and the test was not repeated.  She had a couple of upper GIs and a small bowel exam done.  The upper GI revealed a hiatal hernia.  The small bowel study surprizingly was normal even though the gastric emptying scan really was not.  She had a gall bladder scan which was grossly abnormal.  The doctors thought some of her meds could have caused this response.  She was taken off the meds, the scan was repeated and the results were worse than the first time.  She had cholecystectomy and a short time later a sphincter of odi stent placement.  She developed pancreatitis secondary to the stent placement which rapidly was cleared up with meds.  Through all of this she has almost constant midepigastric pain, nausea, intermittent vomitting, and diarrhea.  She has been diagnosed with gastric reflux.  She has had several endoscopies all off which have shown chronic gastritis and esophagitis.  Her most recent endoscopy (about 2 weeks ago) after intensive IV therapy resolved the chronic gastritis and esophagitis but showed thickened rugae I believe in the gastric antrum.  She has had both head CTs and MRIs to rule out any CNS cause for her symptoms.  The symptoms don't seem to increase and decrease in any pattern other than becoming worse when she eats.  Her physicians can find no physical cause for her symptoms so she has had several psychiatric work ups.  Her therapists and psychiatrists can find no clear cause for her symptoms and they do not feel she fits into any pattern of psychological disease.  Her latest bought with her illness has been about a month long and has presented with almost constant vomitting and diarrhea.  She once again has an NJ Tube in place, and she is not tolerating the tube feedings well and continues to vomitt.  Her physicians are convinced that she has psychogenic vomitting, and once again the psychiatric people are scratching their heads stating they can find no psychological cause for the vomitting.  Are there any lab tests, imaging studies etc. that can be done to help figure this out.  They tried to repeat the gastric emptying scan but she was not able to hold down the liquids.  HELP!

[Sheila]

I wish that you had posted your daughters age.  There are so many things that can happen to people's health and it usually happens at a certain age.  Have you tried to just take your daughter off of food and on liquids only to give her system a rest for a few days?  Then the only foods I would give her would be banana's, rice, applesauce, and toast in small quantities only.  I remember hearing all sorts of stories stating that once the person was taken off of all medications, problems slowly disappeared.  What usually happens is a medication is ordered and that medication causes side effects.  Then another medication is given for the side effects.  Then this medication causes side effects..... and the story goes on and on.  One of the big problems could possibly be that her entire system has been thrown off balance and when her body tries to correct itself, she given another medication that throws it even further into space.  I'm not saying give up on the doctors, but ask for the reasons and demand the rational for their treatments.

[jen]

My husband developed several of the same symptoms after dental surgery, several antibiotics to clear up the infection in his jaw.  He used tagamet, zantac, prilosic, propulsid to try to control the symptoms.  
About one year later, different GI specialist, his stool tests reveals the toxins of a strain resistant bacteria.  Dr. said the toxins could cause the nausea, pains, etc.  Some Dr. in So. California would study him for free (because it is rare to find the toxins in the stools).  But who wants to be an experiment after so many other test as the above has been through?  There is evidently an experimental antibiotic for this, which was very expensive per dose, which this Dr. in California is using.  Our insurance will not cover such costs.  He chooses to live with the pain, nausea, intermitant depression, sore joints, ringing in the ears, and take Pepcid only at night to keep the acid reflux down.  He tried adding bulk, staying away from milk products, fatty foods and red meat.  Bulk caused more gas and pains.  The other avoidances seem to help in the bad phases.
Maybe the girl has a strain resistant bacteria, also?

[Veronica]

You need to talk to a Dr. Michael Lyons in Tacoma, WA.  He has been the only one to give me straight answers and he knows his stuff. [phone])  He is very busy..and I have no idea where you live....but he has made my life the most comfortable it can be.

[To Betty]

Could you be allergic to something you're eating? With itching in the throat especially (and possibly your other symptoms) it could very well be an allergic reaction. Maybe your other symptoms could be lactose intolerance? It might help you figure out what's happening by keeping a "food diary", writing down what you eat and when the symptoms are at the worst. It may also help to eliminate one certain food at a time to see if symptoms improve. I think allergists can test for food allergies but I'm not sure. Good luck to you and hope you feel better soon.

[Betty Jones]

I am having constant pain in stomach; gas after eating; throat itches; some improvement with belching. I have had endoscopy with negative biopsy; doctor said possibly GERD disease; raised bed 6-8 inches; don't eat before bedtime; taking Propulcid 20mg qid and prilosec 20 mg qid. I am miserable; please advise what might help or what further tests may prove enlightening for help.

[Carol Guilford]

Dear Adel,

Please check the labels of everything your daughter is ingesting.

I think she shows signs of aspartame (Equal, NutraSweet) poisoning.  This could be in her chewable vitamins or meds such as Pedialyte and Augmentin or Singulair.

The doctors didn't diagnose anything because they are clueless, victims of disinformation from the AMA the Diabetic and Epilepsy Foundations.  

In 1995, the FDA was forced to reveal, under the Freedom of Information Act, 92 symptoms caused by aspartame.  The top 10 are headache, dizziness or problems with balance, change in mood quality or level, vomiting and nausea, abdominal pain and cramps, chaned in vision, diarrhea, seizures and convulsions, memory loss, fatigue, weakness.

Celebrex, by the way, made by the poisoners Monsanto who also make aspartame killed 13 people the first 10 weeks it was on the market.  

Go to www.dorway.com and http://aspartamekills.com for more information.

My very best,
Carol

[[email protected]]

This may not be related to your daughter's condition, but it's certainly worth checking to find out if she has iron-overload, a very common genetic disorder (hemochromatosis) that is overlooked, but very treatable before severe damage has occured by phlebotomy. You can be iron-overloaded and anemic at the same time. Doctors treat this condition lightly, so you need a qualified hemotologist/oncologist, and possibly hepatologist to give an accurate diagnosis. I'm not a doctor, just a patient who suffers from this condition, and many of the problems you described, I have incurred. Wish you the best of luck in your quest to help your daughter and in finding a correct diagnosis. This much I feel I can say from what I just read from you and my experiences is, you haven't found the right individual to treat her yet. Keep trying!

[silvereagle1948]

A related discussion, The Cure was started.

[Marcy Merkle]

I can relate with yourselves & daughter. My Mom has been hospitalized w/the same symptoms for 2 months now & has lost over 35 lbs. The only difference is they have removed her gall bladder. Pls. HELP and I will do the same if any conclusive cure has been diagnosed.

[J Shannon]

Having experienced many abdominal 'issues'over the years, I am by no means an expert, only a sympathetic patient as I have been in that 'unknowing' stage before.  As the 1st comment suggested (Getting a second opinion/different hospital).  I agree 100%.  And once again, if you live on the East Coast, I can recommend UPMC (University of Pittsburgh Medical Center).  I have been thru many hopsital including Hershey as recommended, but I was finally treated the best and had the best treatment at UPMC.

So for whatever it might be worth...

Good Luck!

[J Shannon]

Having experienced many abdominal 'issues'over the years, I am by no means an expert, only a sympathetic patient as I have been in that 'unknowing' stage before.  As the 1st comment suggested (Getting a second opinion/different hospital).  I agree 100%.  And once again, if you live on the East Coast, I can recommend UPMC (University of Pittsburgh Medical Center).  I have been thru many hopsital including Hershey as recommended, but I was finally treated the best and had the best treatment at UPMC.

So for whatever it might be worth...

Good Luck!

[Janet Harrison]

I have had the same problems for several years. Duke University Medical Center is where I went for my problems. They have several doctors that are excellent in this field. Two of those are Dr. D'Amico and Dr. Eubanks. If you need any information, please send email.

Good Luck and God Bless,

Janet

[angie]

Has your daughter ever had her amylase and lipase levels checked?
She sounds alot like my daughter who has pancreatic insufficiency. They done an secretin endoscopy on her and tested her amylase, lipase, trypsin, chymotryp, and pH. Which resulted in her diagnosis.

[Betty]

I have been told that I have collagenous colitis. I have chronic watery diarrhea with anywher from fifteen to twenty  movements a day.  I have tried everything and am now on opium.  Ten dropsfous to five time a day and that doesn"t help.  Is there any surgery that would help?.  This has been going on for several years and now I have accidents and take a chance every time I leave the house.I have also recently  been diagnosed with peripherial neuropathy hereditary sensory.  Could there be a connection?
I would appreciate any information you could give me.  My age is 68and steroids are out of the question.
Thanks, Betty

[jennifer]

Dear Adel,
You didn't state how old your daughter is. I am 31 yrs old and was diagnosed about 11 yrs ago with a disorder of sphincter of odi. After years of vomiting and weight loss and gain some doctors had told my parents that I was anorexic and others said I was just an emotional child. I finally found a doctor in my 2nd year of college that said that no illness is in your head. He put me on several different type of drugs then 6 months later I had my appendics out and quit taking the medications. I felt fine for about 4 years then about once or twice a year I would get the "stomach flu" I would always end up at a hospital and they would have to give me drugs to make the vomiting go away. Then about a year ago nothing would make the vomiting go away. My parents finally said that they would help my husband and I pay to go back to the doctor that had solved my problems before
(we have a HMO and couldn't get a referral)Went back told him that I was a little stressed about money and he said everyone has stress but the vomiting isn't normal it is the sphincter of Odi and when we looked back at my "stomach flu bouts" they were always after something stressful like they holidays or a big event such as parties that I was in charge of putting together so the solution was to take a small dosage of paxil to slow down my digestive system. I hope by telling you this in detail that it may help your daughter because I know waht it is like to be sick. And since I've been taking the paxil I haven't had the "stomach flu" since.
Good Luck to you and your daughter
Jennifer

[Jeannine]

Adel,

I would get to a good GI motility specialist or at least
go to a different hospital for a second opinion.You may have to travel but it sounds like it would be worth it.It sounds like
maby gastroparesis? (check out posts below in forum).Maby the
antibiotics have caused a bacteria to take over in the intestines,that could cause diarrhea or the lack of the gallbladder can cause more bile to empty into the small bowel
and cause diarrhea (dumping syndrome??)I think the worst thing to
say is it's "in her head!"(maby its time for new Doc's?)
There is a new drug out for IBS to help pain and diarrhea, Lotronex, it is available at pharmacy's also Zofran is really great for nausea/vomiting it is exspensive but if it can help its worth it.It can be given by IV or pills.
Maby the Lotronex could help the intestines with the tube feedings??I really hope things improve for your daughter and
you soon! If you live on or near the east coast there are some
good GI Doc's in Hershey and Phila, PA and Baltimore,MD.
You could also try a major teaching hospital which is usually
where you can find Dr's who have seen alot,and may have better
experience to handle you daughters situation.Every Dr has different ways of approching things so a new attitude may help
you.
Oh,ulcers can slow gastric motility also.
Good Luck to you.

Jeannine