Major Complications Almost 6 years-Chronic Nausea, vomiting, pain, severe...

Update got call this morning I am being admitted to UCLA by gastro doc and hopefully get some answers more.  will be oiff for a few days maybe back on saturday. ttfn

Friday night and home.  Boy it was fun for prep of colonoscopy since thursday a colonoscopy and extensive endoscopy were done with lots of biopsies.  go back ion 3 weeks to go over results as some of tests with pathology can take time as some are highly specialized.  At least a trial of a new med for nausea to go with the other two I take and seems to help.  It is called marinol and is a derivative component of pot that is legal and given to patients normally given chemo to help with nausea but it can alsbe used for others with chronic nausea issues as well.  all i know is my insurance company really loves me and they can not cu me because I am sick which i am thankful for. 

i will post more when i know more

Was looking over some of the labs done at UCLA when I was admitted for tests.

It was interesting as my serum carotene had never been tested but it was low, which was interestesting, and my calcium levels were normal before the new labs were drawn this week but my calcium levels are low even though on calcium citrate and on calcitriol which is supposeed to help utilize calicium better and stop the spillage in urine. zinc is fine too.  My CRP is high an so is my Sed Rate, both which can be from inflamatory response but not specified where.  Alkaline phosphatase still high H Pylori is negative.  Just ots of different things and still no much pattern in things but still have to wait till biopsies come in and know what the one area was different then the rest.  still tired still not feeling wellm but many specialist many things to still explore and find out when all the picture can be brought together and some may be related while others are not. still uncertain but it is ok, sorry if i ramble on too much.  have a good weekend all.

mother1991, I just had an open reversal of a rny, 3 weeks ago, in my case I had huge ulcers and severe malabsorbtion problems even though I was able to gain almost 90 lbs starting 6+ years post op. because there are studies now that show certain post ops even graduate post ops can malabsorb so many years after surgery,that vitamins even those designed for bariatric surgical patients and other nutrients,never get absorbed on a cellular level. A lot of people don't understand my particular situation how I could be so malnourished but still experience a severe weight gain. I just started blogging about under my profile after not being on OH for years. Good luck to you in finding out what will best help you. hugs, Lisa

I could have wrote this over the course of the past 3 yrs. I didn't get scurvy instead I got ricketts. I did however, have the reversal and so far my #'s are up by a lot. I had my reversal 8/24 of this year. I had my reversal after being in the hospital for about 6 wks and having transfusions, infusions, and being on TPN. I got down to 98 lbs, developed ulcers, and a stricture (that was not there until may of this year I guess) that would not stay dialated. They cut out the ulcers & strictured area, reconnected my stomach (from the good part left of my stomach) and let down my intestines. I am now absorbing everything that I need to absorb but, my #'s are not completely better yet, they said that will take time. I am still very swollen in my belly but, hopefully that will go away soon.

Hi More Updates
Had the appointment with the rheumatologist on Wed Sept 29.  He has ordered 3 more tests to check for autoimmune responses  and also got referral to a dermatologist and genetics department.  I always knew I had very flexable buit have diagnosis of hypermolitity syndrome.  There are some connective tissue disorders that hypermobility is part of the equation, also with genetic referral there may also be other things that can have malabsorbtion as part of it too. 

I have the appointment with the dermatologist on Tuesday Oct 5 and the genetic department on November 29 but if opening before this date will get in then.

The followup with endocrinologist on Thurs Sept 30 was a good one too.  Now my calcium levels are low sespite uptake on calcium supplement and D levels are down in the dumps at 20 when in may it was 33.

Endocrinologist did state this is hungry bone syndrome.  My calcitriol has been upped from 0.5 mcg twice daly to 1 mcg twice daily.  hopefully labs will improve.

On Mon Oct 4 i have an appointment for a physical therapy evaluation to see where strengthening can be done to help limit injury to tendons, ligaments, and joints.  The farrow wraps for the lymphedema is in i get them monday too my appointment with lymphedema therapist is at same place as PT back to back appointments.

Follow Up with Gastro is end of oct.

Keep posted with more

 
The connective tissue disorder, was that Ehlers-Danlos syndrome?

Today is the appointment at UCLA with the dermatology department.  I am seing Dr Modlin whom also has a good understanding on Vitamin D so will be good with all the problems with many vitamin deficiencies and maybe some clear consensus on swelling color changes in right arm.

I saw saw the Physical Therapist yesterday and there is a huge difference in the strength in left hand which was 48 pounds for the grip and my right was 20 pounds a very bid difference which is not good.

Keep posted when I know more.

Saw a doctor in the dermatology department at UCLA and they thought the rash and swelling for 18 months was nothing skin related but did give referral to neurology to follow up on the large discrepency of strength between the left and right hand.  Also too at least notation was documented with finger tips purple colored at times.  I do have an appointment back with dermatology for a skin cancer check because it runs in the family.  My appointment with neurology is dec 9, genetics nov 29, dermatology to be schedules, follow up with gastroenterology and endocrinology on oct 25.  Also awaiting the results of labs drawn tuesday for other possibilities of autoimmunue process.

Keep posted when I know more.

I am just curious what your latest update is?  Have you had a test called enteroclysis or the ERCP?  I had malabsorbtion due to something called blind loop syndrome.  Surgery corrected it for me by the removal of about a foot of small bowel.  The enteroclysis is the test that finally gave me the diagnosis and cause of the malabsorbtion.

Marinol helped me more than any other nausea medication, but was hard to get insurance approval. Hope things are going better!

Stephanie E