This will be my third time to see Dr. Shen for yearly scope w/biopsies. I developed pleurisy last month and was VERY sick. Inflammation in the pleura which makes me worried about the whole IgG4 thing. I am staying at the Glidden House to get my mind off of things while there...

How did your trip go katenet?

How embarrassing! I am anxious still because it isn't until March!! I was making the plans, plane tickets, figuring out who could come with me and it was suddently very overwhelming. I am feeling better now--much stronger and started using lidocane gel which is a great thing. It had been feeling like I was pooping glass shards ouch. Thanks for asking. Sorry to be graphic

Okay I went to Cleveland and I am IgG4 postive. I am a bit overwhelmed.

Katenet - what kind of information did you get re. the IgG4, such as prognosis, treatment, etc.? Has the treatment of your pouch problems changed because of the dx? I too was told I was IgG4, but have not yet been able to get any more details from the dr. (No change in treatment).

From what I can understand he has about 100 of us now, not the 29 I previously thought. He says if it is in two organs then he can make a case for treatment. Now I have no clue what that treatment might be or even what happens when you have hyper IgG4 disease. I am not sure what anyone knows.

On a positive note, I highly recommend the Glidden House. It is quiet and within a 10 minute walk to the hospital. It is on the Case Western campus and has a nice vibe. Lots of good italian restaurants within walking distance as well.

I was just diagnosed with IgG4 pouchitis as well. Have any of you heard of any treatment options from Dr. Shen? Do you think it is worth getting the pouch removed before this condition attacks other organs?

I have been struggleing with pouchitis for many yrs, I have been treated at Mayo and am considering a second opinion from Dr Shen how do you like him ? Also what is IgG4 ?

From my understanding of it, from what I've read and talked about w/ Dr. Shen and other patients, he thinks it's something that happens during surgery to trigger the reaction (IGG4 pouchitis). Still being studied, obviously, but I don't think surgery is a treatment right now.

Hi friends!

In addition to the IgG4 issue, I also came up with some kind of genetic issue which may be called Blaus disease? I have no symptoms of either IgG4 or Blaus so it is all still very surreal to me. Nothing has really changed medication wise or diet wise. I take b12 shots and vitamin D prescriptions now as well as Xifaxin and Entocort, Allopurinol.

In my opinion, what it comes down to is treatment and how whatever it is we all have is actuallt TREATED. For that question I really have no answer.