Getting sicker - Digestive Disorders Message Board

ReneeRD · 02-29-2004, 10:35 AM

I would like to be given suggestions about the sort of specialist we should be looking for:
My daughter has had type 1 diabetes for 14 years. For the past three years, she has has uncontrollable diarreah & intermittent vomitting. She has been going to a pcp, an endocrinologist and a gastroenterologist, and has recently been re-tested for various aliments (stomach emptying, celiac, crohns, IBS, ...), with no diagnosis. The colonoscopy & endoscopies have only revealed unusual amounts of bile in her stomach, according to the gastroenterologist.
She was hospitalized this past December, in critical shape, in intensive care for five days...no diagnosis.
Any of the 'stomach settling' perscriptions have been somewhat helpful for a short period, then it's back to the almost constant diarreah.
I moved across the country to be near her until this is resolved. We would go anywhere for health care at this point, because this condition is ruining (and maybe threatening) her life. She is 26, and a grad student.
She now had anemia, low blood pressure, and low bone mass.
Any suggestions will be greatly appreciated!

luvmyboys · 02-29-2004, 11:01 AM

What medicines has she been on in the past? Have you been to Mayo Clinic?

luvmyboys · 02-29-2004, 06:12 PM

The reason I ask is because I used to be like this except for the vomitting. I would just have diarrhea to the point where I wouldn't be able to eat or drink anything cause of the nausea and gnawing for days and would wind up in the hospital on IV's and lots of immodium or lomotil. Now I am the opposite. I take a medicine called carafate or sucralfate which soaks up excess bile. It is usually prescribed to people who have had their gall bladder taken out. I still have mine, but have excess bile salts. I, however, am not diabetic, so I don't know if that has any bearing on your daughter's problems. I don't know if any of her problems are related to the diabetes or not. They think I am pre-diabetic as my blood sugar drops into the low 50's several times a week especially when I am having eating problems of course. I did finally go to Mayo Clinic because I got tired of getting the run around where I live. At Mayo's all the doctors are in one place and you get all your appointments usually within 4 or 5 days and hopefully an answer before you leave. You do need a referral though.

ReneeRD · 02-29-2004, 09:04 PM

She has been on the medicines you mentioned, and is currently taking the stomach coating drug, and opium. I understand that the coating drug will not stop either vomitting or diarreah, but is designed to protect the stomach wall. The opium was helping, but not curing, until recently, when its effectiveness began to decline. This is the familiar pattern with the drugs she has taken.

So the Mayo Clinic is a place to consider? Thank you so much--this is the sort of help I was hoping for when I posted. I will check their web site.

Her doctors are sort of in the 'let's wait & see' mode. The doctors who treated her at the hospital just wanted to get her back to 'wallking' health, and had no interest in what brought her in... or so it seemed to us. No one seems ot react to the fact that her life is being ruined, not to mention what is happening to her body.

I bought infant food for her today, and it seemed to stay down (and up) for a little longer than anything else she's eaten for the past two weeks.

Thank you so much for the suggestion. I will check it out.

luvmyboys · 03-01-2004, 08:05 AM

I don't know if you can just call Mayo Clinic and get an appointment or not. I do know that you will get in much faster if you have your doctor call for you. Make sure you leave the doctor's office with Mayo Clinic's phone number so if you have any questions you can call them. They will send you a packet of information. I really trusted them. They didn't really make me completely better, but they actually cared and listened to me. My first appointment with a gastroenterologist took somewhere from 2 to 3 hours. It was talking and going over my history and the plan for the time I would be there and what tests needed to be done. They even sent for some of my previous tests that I had done close to home and went over those results too. Examples of biopsy slides etc. Their diagnosis did not agree with my doctor here. I still go to my local gastro doctor, but for maintenance drugs and an occasional scope of my stomach. Please keep posting to me about her condition and if you have any questions about Mayo Clinic, please ask. I went to the one in Rochester, MN. It is about 4 hours from where I live.