I currently very upset and frustrated from a doctor appointment. It was the first time seeing this doc outside of endoscopies but I have had chronic inflammation of my jpouch almost constantly since I got it back in 1990. This changed drastically about a year and half ago when my pouch prolapsed ....I had ulcers and was loosing lot of blood. Well after seeing quite a lot of doctors and being misserable eventually I traveled to Madison and they did an endoscopy of my pouch(which had been done locally but the doc was a sugeon not a gastro and didn't see the huge problems which were multiple ulcers including some bad ones which were biopsied because the doc was quite certain that the big problem was the IBD....he said he would call if was wrong but he doubted that....well I ended up going back to him one time wanting help with what to do about IBD he got me on VSL and boy that was what I needed...but I flared again this year ....I was scared....by the time I got the guts to call to see a local doctor the local doctor doesn't even order an endoscopy of my pouch just says it is from the prolapse and I don't want it to be IBD that is crohns and I could loose my pouch. So does the biopsy done in Madison not pove anything???

Hey Katrina, who'd ya see in Madison? I go to UW Madison, though NOT thrilled with surgeon, My Gi is excellent. Very intelligent, I admit with getting frustrated at how LONG he has to think about things ( but thats cause I'm impatient). His name is Dr. Sigurdur Einarsson.Excellent doc, only works with IBD. Good bedside manner. Worth a consult.
LoriP

I would seek another doctor that is for the birds what he is doing..

My doc at madison was a sugeon but Sigurdur Einarsson is who did the endoscopy of the pouch. I live closer to Green Bay so would rather not have to travel that far for a doctor...and when I did there was some insurence problems. I am very frustrted that I have needed treatment almost more often than not for the inflammation in pouch but he wants to deni calling it IBD even though it is getting to the point of almost 17 years!! My family doc didn't call me back today...I had asked him on Friday to find my biopsy results and help get me a doctor willing to help or call my doc at Mayo or advice, something...I missed my chance to call back and remind him.


A year and half ago both sugeons agreed that this was too much blood loss to be only because of the prolapse.

I feel so very abonent by that doctor....basically trying to scare me out of believing a diagnosis that I have been under treatment for for a long time. Saying things I don't want to have to deal with like having to have an illiostomy. Thanks for letting me know that Einarsson is nice to talk to, I don't know if my insurence will let me see him or not.


I am so upset that I have gone so many years of antibiotic treatment for an illness this doctor wants to say I dont have!!!! He blames the blod on the prolapse even though it hasn't come out in a very long time and I respond to medication!

Thanks for the support....I so need it

I guess I am not getting it- at least the point of the doc telling you that you don't want it to be IBD. You already know you have IBD and that was why you had the colectomy, correct? You still have the genes and can still have IBD inflammation in your pouch, particularly if it is chronic inflammation that is refactory to antibiotics. It doesn't even have to be Crohn's for this. Granted, you are very complicated, but that does not mean that new symptoms should not be dealt with seriously.

I agree, you need another doc, hopefully locally, who will listen to you and help you become functional again rather than just dismissing you. At the very least, I would think a scope is in order. I also agree that you need the biopsy results from the earlier scope.

Jan