Anyone with both j-pouch and pancreatectomy (or pancreas surgery/issues)?

I am sorry you are going through this, I do not have any experience with this but I hope things get better for you. Do you have Crohns? I think that might have caused your issues with the pancreas?

I have/had Ulcerative Colitis that was not responsive to immunosuppressive drugs nor Remicade. I had the total colectomy and jpouch surgeries in 2007-08.  My first attack of acute pancreatitis was in 2013. It was suspected to be autoimmune, but was never certain. It became chronic pancreatitis in 2016. By 2018, I was desperately sick and in constant pain... all from a narrowed pancreatic duct in the tail. It was pure Hell. I had the Tp/iat in August of 2018 and am doing pretty well besides the continued autoimmune BS that seems to pop up somewhere different all the time.
I know there’s a common denominator for all of it, but no one has discovered it yet. I’m “seronegative” everything.  Who knows.  

@SenoritaG posted:

I have/had Ulcerative Colitis that was not responsive to immunosuppressive drugs nor Remicade. I had the total colectomy and jpouch surgeries in 2007-08.  My first attack of acute pancreatitis was in 2013. It was suspected to be autoimmune, but was never certain. It became chronic pancreatitis in 2016. By 2018, I was desperately sick and in constant pain... all from a narrowed pancreatic duct in the tail. It was pure Hell. I had the Tp/iat in August of 2018 and am doing pretty well besides the continued autoimmune BS that seems to pop up somewhere different all the time.
I know there’s a common denominator for all of it, but no one has discovered it yet. I’m “seronegative” everything.  Who knows.  

Thank-you for sharing all of that! I am sorry you are going through this honey, hope things get better. I would reccomend seeing a gastro or endocrinologist for your pancreas, are you seeing any one of those???

Oh yes!!  I had my pancreas removed and my islet cells harvested and transplanted into my own liver. It was successful and I produce insulin from those cells and am insulin-free! The University of Minnesota is one of the few centers in the world that does this transplant procedure.
There are only a handful of us that have BOTH the surgery I described above AND have had also a colectomy with jpouch. So those are the types of people I’m searching for, as we have some pretty unique issues to deal with!!

Thanks for your kind words!

@SenoritaG posted:

Oh yes!!  I had my pancreas removed and my islet cells harvested and transplanted into my own liver. It was successful and I produce insulin from those cells and am insulin-free! The University of Minnesota is one of the few centers in the world that does this transplant procedure.
There are only a handful of us that have BOTH the surgery I described above AND have had also a colectomy with jpouch. So those are the types of people I’m searching for, as we have some pretty unique issues to deal with!!

Thanks for your kind words!

WOW!!!!!!!!!! I never knew you could produce insulin without a pancreas!!!! You are lucky my dear I am so happy you are insulin free, that is much cheaper

Your welcome

I sent my fundraiser link to your email if you would like to check it out

SenoritaG, so sorry you are having to deal with so much autoimmune crap. There are many of us here who have had multiple autoimmune diseases (myself included), but you are correct that you are exceptionally rare with your combination. Have you inquired at U of Minnesota regarding contacting other patients that have been treated there to develop a support group? I bet they follow them long term.

Anyway, you are certainly welcome here. We do have quite a few here with liver/bile duct disease, and many of us are diabetic too. Your Islet cell auto transplant procedure is fascinating and I am thrilled it was successful for you! I presume you have to take digestive enzyme supplements though?

Jan

Hi Jan!

The U of M has only has had 2 of us. Our Facebook group has discovered 4 total. That may be it. We are just curious to find out!

I take Creon for digestive enzymes.  My endocrine function was not compromised at all before surgery, but I knew eventually it would be.  I am definitely glad I did it. There are just issues that go with it and the way it’s done and other organs that also need to be evicted with it...that create a unique set of challenges.
Too much detail for this response, although I’m always open to questions if anyone ever wants to know!

Julie