I Went To My Gi Doctor Yesterday---he Knows About Eds!

[Maxine]

The gastroenterologist I saw yesterday was very nice, and made me feel very comfortable. Wow, it's nice to share good experiences------------------I think I deserve a few good ones.......

Anyway, he asked about POTS, and he admitted he didn't know about POTS, and asked about it. He was so cool about it, and thankfully he was very punctual, as I had to pick up my 3 year old granddaughter from day care, as we are all trying to help keep the new little one, little Miss Mackenzie at home until she recovers from her pertussis/whooping cough.

Anyway we discussed my films, the CT scan and barium enema. He said I have a LOT----and I mean a LOT of diverticuli in my large intestine, in the middle, and the left portions. He then said I need an upper GI to look at the 3rd, and 4th portions of my duodeum/small intestine again. They can not be seen by colonoscopy, or an endoscopy. There are 4cm diverticuli in the duodeum, and wall thickening found on the CT scan. I have had a couple very bad spells with those diverticuli, and now have inflammation.

I told him I have another condition that he probably hasn't heard of, and he said---"tell me what it is". I told him EDS, and he said, "I know all about EDS", and I was shocked. He said my diverticuli is because of weakened walls in my intestines---and can happen from the EDS----------- .

Next Friday I'll be going for an upper GI/small bowel follow through. What a polite doctor, as he actually took me seriously. It looks like some doctors are taking me seriously. I guess it pays to advocate for yourself----

Maxine :0)

[mrsdavidson8605]

YAY! That is so great that the doctor was so helpful!!! Those docs are VERY HARD to come by!!!!!!

[pat57]

That is good news. You might ask him if he could recommend a PCP.

[Maxine]

Ugggggg-----

Pat57, he likes this PCP I have................or so he said......

No telling...

My Dad is going to talk to his PCP, and see if he'll take me as a patient.

I'm not going to be treated with disrespect. In fact I have an appointment with my PCP on Monday for a check up. We'll see if he was just having bad days on those days he was rude. If he's rude again, I'm firing him.

Maxine :0)

[Ernie]

Hi Maxine,

Congradulation on finding a good doctor. I find that 10% of doctors are open minded enough for rare disorders. It's a long road to find a good doctor.

[bellaluna]

Congrats on finding a doc who isn't a complete bonehead. I'm sure you were so relieved!

Mary

[Maxine]

Thanks for your support, it means a lot!

10% is about right Ernie, and I know you have experience in that department-----

I'm pretty surprised that the GI doctor knew about EDS-----AND HE'S LOCAL! IMAGINE THAT!

I did not think I would have THAT MANY diverticuli, and he is a bit concerned about the large ones in my duodeum----4mm is big for the small intestine. Even though some people have large diverticuli like that, it does not usually cause problems, but some how mine did---------a couple nasty flair ups, and now wall thickening.

I hope the upper GI shows only subtle changes in regards to the thickening, as I don't think there's much room for more in that area of my small bowel. It will be interesting to see what Dr. McDonnell at the EDS study at NIH thinks.

Maxine :0)