Can't keep much fluid down but can eat!

[Shazzaaust]

Sorry in advance for the long winded history. 
3 years I was admitted to hospital for 6 weeks unable to keep food or water down. As well as that I had severe diarrhea and very low blood pressure. 
All the doctors did was gastroscopies and colonoscopies, ultrasound and MRI with no results abnormal other than gastroparesis. 

I am a 40 year old female without a gall bladder or appendix, have had a mechels diverticulum and plummers disease of my thyroid. 
When I drink water my stomach distends and a short while later I vomit. 
 
My bowel then settled and I was able to start eating but could not keep any fluid down. I then discovered that I could keep ice frappes down and have lived on those ever since. 
The doctors did wonder if I had autonomic failure and did a tilt table test and sweat test 6 months after the original attack. The tilt test was normal but I barely sweated in the sweat test. 
In the last twelve months I can now keep down about 150 mls without vomiting but any more than that and I am in trouble. 
On top of that I, on occasion get small bouts of the previous symptoms where I end up hospitalized with dehydration and abnormal liver function tests. 
My question is, does anyone else suffer with this condition and if so have you found a cure or help?  My life is in serious limbo and I would love help if you could provide this. 

[patient915]

I have an autonomic condition so I'd be happy to answer any questions you have about that.  Have you tried erythromycin?  Have you thought about my idea of a feeding tube to keep you hydrated?

[Shazzaaust]

Hi I have been on many many medications including motility meds and nothing works.  I just end up being anaphalactic to so many.  I am now anaphalactic to 10 meds.  I have had domperidone (motillium) as well as Nexium and many others.
I can only take Endasnatron (Zofran) for the nausea as I am allergic to Phenergen, Maxolon (reglen)  and Stemetil.  As I do not have cancer, I pay an astronomical sum for this medication.
I am currently being tested for the autonomic condition (waiting for the neurologist) and the doctor is now questioning whether I have a tumour of the intestines.  I am not sure what this would be however have to wait for another attack to have this testing.
Thank you for your thoughts.
Shazza

[patient915]

It doesn't sound like Shazzaaust has a thyroid problem or Plummer's disease.  Therefore, there is no reason for Shazzaaust to look up this person in the thyroid community.

[meadowsweet]

Hi,

It's me again! If you type McMillan Nelson into the search engine on this page it will bring up all his posts. He gives a list of everything he did to cure his plummer's disease.

[meadowsweet]

Sorry, it wasn't Nelson McMacdonald but McMillan Nelson. He's doing really well now. If you went to the thyroid section of this forum you might be able to find his posts.

[meadowsweet]

Have you tried researching something called 'the specific carbohydrate diet'? Lot's of people find a cure for their bowel problem, e.g. chronic diarrhoea by sticking to this diet. Also, following the diet for curing candida might be an option to help you on the road to recovery. It is similar to SCD but cuts out extra stuff too.

I'm waiting to be tested for Plummer's disease, I have thyroid nodules with mild hyperT. I'm currently looking for a natural cure, but the doc won't let me take any supplements until after I've seen a specialist.There is someone called Nelson McMacdonald (I think) on this forum - on the thyroid section - who cured his Plummer's disease with supplements. He still has nodules but his blood tests are back to normal.

[patient915]

Welcome to the gastroenterology community!  Were you put on any medication for the gastroparesis?  A medication like reglan or domperidone might help your gastroparesis enough so that you can keep water down.  If not you might want to consider alternative means to get water (such as a feeding tube into your small intestine) if you keep on becoming dehydrated.